Living on the Spectrum

Our Long Vacation is almost coming to a close.....

2012-02-03T19:43:00.001-08:00

Hard to believe that our stay in Florida is now over and that we are once again living life on the road. A few weeks at Nana's house gave us at least another whole suitcase full of clothes. Considering we were almost at max capacity already in the RV with clothes, finding space for the new ones has been quite a challenge. The boys got almost every Angry Birds tee shirts known to man. We had a wonderful time in Florida. We spent afternoons at the beach (who knew they would love it so much? Especially Nick?) We took a trip to the Sanford Zoo, and Michael completed his first ever zip line course! He loved it! We spent lots of time with family, and that was awesome. During our last weekend there we threw an early birthday party for Nick. We just had a small family party with presents and cake. Nick took a little while to come around as there were a few people who seemed to show up all at once. We sang Happy Birthday to him, even though he was less than impressed with our singing abilities. He promptly stood in the corner and waited for everyone else to finish their cake before he sat down and had a piece. No one cared. There were no expectations placed on him, he did things his way. Yes I had to prompt him to open his presents....but who cares. None of them did. They were all opened eventually. He knew on some deep level that this day was about him. He smiled when I told him we were going to pick up his cake (Angry Birds...of course!) He ate two whole pieces this year!

Wednesday we left Florida and headed back up to South Carolina. We are visiting with more family here for a few days before heading up north for good. Got a couple more busy days ahead, starting with tomorrow. Not sure how much of our plans will be changed due to Nicks moods at the time, but we will deal with that when it comes. We started him on Magnesium Calcium Citrate with vitamin D3 while in Florida. We have seen some pretty amazing results. He is able to tolerate going to places a little more and not as anxious. Yesterday we were shocked that he sat in a barber's chair and let them cut his hair! He saw his dad and big brother getting a haircut, and he wanted one too. The Barber has always been a source of meltdowns due to the noise of the vacuums attached to the clippers. The fact he tolerated this and was proud of himself afterwards makes me a firm believer that this is working. He DOES understand that not everyone has these issues. It is apparent when he walks away smiling and proud of himself for doing something so simple. He has been able to go ice skating again, go to stores, and the beach with no meltdowns. Now he actually wants to go places! He jumps at the chance to go "bye bye", whereas before he would have so much anxiety that he did not enjoy going anywhere, and everything would bother him. I just want to make things easier for my little man...and judging from the last three weeks, we are on the right path. Hope it continues and I did not just jinx myself :)

Craptastic....

2012-01-12T14:59:00.000-08:00

That is the only way to describe today so far. What did I expect though coming out of a craptastic night? Last night started out just as usual. I made Nick a dinner of raviolis since our dinner was going to be a little later in the evening and he needed to stick to his routine. He had dinner around 6pm, after that was bathtime and lotion, and then he got his nightly leg/foot massage from Nana. He had also recieved his nightly medications of risperidal and melatonin. He should have been set for the night. Apparently not so. He woke up around midnight. Wide awake. I waited for him to go back to sleep on his own. And waited. And waited. And waited. Finally, after two solid hours of hearing him laughing and stimming, I gave him another dose of melatonin. Sometime around 3am he drifted back to sleep....I think. I don't know for sure because I was asleep by that time.

He woke up today before any of us did. I know I heard the alarm on our phone go off (and that happens at 7:45am) and Nick was awake before that. Mike got up with him and got him his morning yogurt. But Nick has gotten used to me doing that. He came down the hallway saying "Time to get up!" and tried to pull the blankets off me. I did not fully wake up until after 9am after I had my much needed caffiene and shower. To say Nick was grumpy would be an understatement. Our normal day consists of getting him to practice writing(something he hates doing, but usually does not protest a whole bunch), working on his Ipad, taking a walk outside, numerous breaks in between, but we end up getting a lot done actually. Today, we managed to get two lines of the letter A, and that is it. Numerous meltdowns and whininess. He was tired. The day was getting steadily worse and he was getting more and more upset. Around 1pm I did something I don't normally do. I gave him some melatonin and forced him to take a nap. The kid does not sleep during the day, no matter if he slept the night before. I did not want to end the day with the way things were going. So, we stopped everything and just took naps. Nick and I both fell asleep along with Mike, and I think I slept three solid hours. Nick and Mike woke before me, so they maybe had two hours. Ever since waking up from his nap, Nick has been in a much happier mood. Instead of crying and whining, he has been laughing and smiling. Sleep is what he needed today. Yes it sucks that I gave him something to put him to sleep, but now he is much happier because of it. We are not ending the day screaming at him. It is a Win-Win for all of us.

Florida

2012-01-06T16:14:00.000-08:00

We made the journey down to Florida from South Carolina last Monday. We planned to stay longer in South Carolina, but Monday two of the kids came down with poison oak and had to stay in the house. Since we could not really do anything, we decided to go ahead and come down to Florida. We will visit South Carolina again in a few weeks and hopefully will have better luck!

We are visiting with my mom and it took only one day for her to say that Nick is exhausting! We are used to him and we are still exhausted at the end of the day. Wednesday we managed to make a trip down to the beach and enjoyed an afternoon out. The boys had a great time! It was nice to just let them run and play in the sand. Nick loved it! We need to go back when it gets a little warmer-at least warm enough to go in the ocean. It was a little chilly that day, but still way warmer than what we are used to.

I have started to work with Nick on writing. That is one of his biggest goals in his IEP from his last school. We are taking it slow, and it has led to some meltdowns, but I am determined that he will write his name. I am using every tool I can think of that I have. My child WILL write. I don't care if it is just his name, he WILL write!

While we were at the beach the other day, we stopped to get some Coldstone Ice Cream(YUMMY!!). That is where Nick took his very first spoonful of ice cream. And he kept on eating! He tried some of hubby's french vanilla, but then got turned on to my Cake Batter w/chocolate chips! He kept coming back for more :)

Right now the boys are enjoying time with their nana and aunts and uncles. Tomorrow we are going to visit with two of my aunts and maybe my cousins. Nana has agreed to come along to watch Nick and give us a chance to visit. Hope she is up for it!! LOL!

Happy New Year!!!

2012-01-01T20:26:00.000-08:00

We welcomed 2012 on the East Coast! It was a long journey and it is not totally over with yet, but we are relaxing with family for a while. We have 'parked' in South Carolina for a couple days to visit with Mike's side of the family. After that we are headed down further south to visit with my family. Will leave you all with a couple of pictures from our travels.....

Playing with his big brother

Loving the sunshine down South!

The Night Before Christmas....Autism Style

2011-12-24T09:29:00.000-08:00

A friend of mine passed along this poem to me today and I thought it was perfect for the upcoming holiday. Which we will just try to make it through the day with no major issues. You can find that poem and more at THIS website.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color and style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing

You’ll be quiet and learn,
Like the years that I did
When the tables were turned...

Somedays.....

2011-12-23T18:49:00.000-08:00

You just can't wait until he goes to bed. This has been one of those days. I have expected numerous meltdowns due to all the new people moving about, so I can't really say that I am surprised that Nick has had a good chunk of his time spent in the trailer today. Right now we are parked in front of the fam's house, so it has not been too bad. Relatives are close by, and have come out individually to visit with Nick and I here in the trailer. They are wonderful, really. We have ventured to take Nick inside the house numerous times today. He wants to go. He is happy for a little while. And then things get overwhelming. He shuts down completely, and starts losing it. And back to the trailer we go. It has been a viscious cycle all day. This is the part that makes me more sad than anything else. Neither us or him can have any sort of life like this. His senses completely overwhelm him. All. The. Time. He constantly seeks input, but then that input can turn on him and then overload. I know this happens to a lot of kids on the spectrum, but it honestly sucks. It sucks balls. Big Ones. I can only hope that next year we will figure out a way to get him under control, because right now he isn't.

California.....

2011-12-23T12:02:00.000-08:00

We made it through Oregon and into California. We stayed the night Wednesday at a truck stop near Redding, and we were actually pretty comfortable there in the trailer. Thursday we headed further south to see some of Mike's family. We were shedding our jackets as we were getting further south. I think that is when we realized that we are so accustomed to colder weather-it was amazing to us to be just in normal clothes in December. The boys are having a blast getting to know their long lost cousins (whom we have not seen since our move up to Wa back in 2000-when all of them were just littles-including Michael who was 1yr old.)

Nick is being just Nick. We are used to him, but other people are not. Within minutes of visiting he had managed to knock down some picture frames. He was running to each room trying to do this. He knocked over the TV, took down their bulletin board, and a few other items. We try to stop him as best we can, but when your child is hell bent on knocking things over just to hear it drop (he cracked up at the huge bulletin board crashing to the ground) it can be hard to actually try to have a conversation with anyone. As soon as we let our guard down he was whizzing past us with arms extended and a satisfied grin on his face. The only time he stopped was when he was shoveling mac-n-cheese into his mouth. We decided it might be time to go and see some local Christmas lights-in part to get Nick interested in something else and spare the house more destruction. They assure me that it is OK, and that there is nothing he has knocked about (other than the TV) that cannot be replaced; but I still feel like a failure. I cannot control my child. More to it, I cannot control his autism. Even medicated he is hard to handle. Fortunately, everyone thinks Nick is cute and that we are just doing the best we can with him.

Sunset in Oregon

Christmas Lights!

On to the Christmas light display. It was HUGE! And so was the line to get in! We knew right when we drove up that there is no way Nick would tolerate standing in the huge line. Michael went out and stood in line with his cousins(they are now unseperable!) and the rest of us stood out in front with Nick. We pleaded our case with one of the local 'helpers' and he was nice enough to let us through without standing in the huge line. We had a short and sweet visit through the display, which was just what we wanted with Nick.

They have SUN in California! Who knew??!!

We are enjoying our time here in Cali with family! Not sure what is on the agenda for today, but I am sure it will be fun. Hope everyone has a Merry Christmas! Safe travels if you are going to see relatives and friends. Will try to post again before Christmas, but if I don't, then have a safe and happy holiday!

Moving.....

2011-12-19T21:28:00.000-08:00

Kitchen area in our trailer....

Well, our house has been packed up and we have been living out of our 26ft trailer since last Monday. We went from having over 1400 sq feet of living space, to 26 feet. For four people. Needless to say, it is cramped. But, we are making it work.

This is the 'Master' Bedroom. There are two cabinets for clothes on the sides of the bed, and under the bed is storage space for blankets, dirty laundry, etc.

The boys each have a bunk. To the right of the bunks is a closet for jackets/clothes/sheets, etc.

Most of this is Nick's medicines. Some can also be used for Michael.

Plates/cups/bowls

Our 'Home' on the road...

Exterior

We will officially be under way on Wednesday. Driving from one end of the country to the other. We have actually been living in the trailer now for a week. The first night we found out our heater did not work right(what a way to find that out...when it was 23f outside!) We went and bought a space heater and dug out every blanket we had packed. We got through the first night, and by Tuesday night our heater was back on line and working. I am tempting fate to write this, but it has been working fine ever since. The park we are at right now only has internet available in the laundry facilities, so that is where I am updating right now. I am also doing laundry-so I am multi tasking! The boys are out of school for the holiday break, and by about 4pm we are getting a little cabin fever. Today Nick and I took a nice long walk around the park and saw ducks, and threw rocks in the lake. He really seemed to enjoy that. He even picked which ways we went on the trail. We have my retirement ceremony to attend to tomorrow and then the next day, we are off. Michael is very excited! We are all anxious to get on the road since we have been going bonkers in the trailer...just sitting in one spot. Anyway, stay tuned for updates and pics from our journey! To Nana's house we go.....

He Laughs.....

2011-12-04T19:47:00.001-08:00

What can I say? Don't you think it is funny when someone goes berserk on a computer? Jus' Sayin'....

And yes, he is saying "That is a no-no!" "No-no". This made me smile for the whole day :)

I LOVE Surprises!!

2011-12-03T17:15:00.001-08:00

How about you?? I admit, when hubby told me that we should ALL go grocery shopping, I thought I would have a panic attack. Nick had been less than his normal lovely self, and the thought of dealing with a meltdown in a crowded public place is enough to make anyone cringe. Imagine my surprise when this happened.....

See that??!! It is a SMILE!

I don't know who put the red tape there, but he did not mind.

He only bolted three times....none of which were at the check-out; which is always good. He even helped put things in the cart! Ending today with a slight smile :)

Saturday Morning.....

2011-12-03T11:04:00.001-08:00

Today started with a massive meltdown from Little man. Nothing dashes hopes for a great day like hearing a screaming, yelling, and destructive 7 yr old. We had gone 5 whole days with no behaviors and it was wonderful! Now, here we are again. We spring into action....giving advil and nose sprays. It actually started last night before bed. We started with Advil and Zyrtec. Then nose sprays, and finally his risperidal. We put him to bed, but that was not working. He came out in a rage and started hitting me again. I held his hands and walked him back to his room. It took him about another 30 minutes to settle in for the night, and when he was finally asleep I could relax and let my guard down.

This morning started out how last night ended. Damn. Why? What is making him do this? What is bugging him? Give Advil and irrigate nose. He calms down, but only briefly. At intermittant times he barges out of his room, clearly not in control of himself, and seeks me out to hit. I prepare myself and grab his hands as he starts. I put him back in his room. This happens numerous times and I give him another nose treatment. He is calm enough now to possibly eat some yogurt. I ask him if he wants yogurt and he comes to the table. I crush up his morning dose of risperidal and mix it in his yogurt. He eats a couple bites, but then is once again upset by something and runs to his room. I calmly go after him and tell him to finish his yogurt. He reluctantly does so, but he is sitting quietly and not hitting me....so things are getting better. After his yogurt, he goes back to his room and lays quietly on his bed. I let him calm down the rest of the way and to possibly let a filled tummy settle him further. It worked. He emerged a few minutes later smiling and engaging. I asked him if he wanted waffles. He responded by going over to the table and sitting down. He ate three waffles and has now been meltdown free since.

So, what IS causing his meltdowns?? Could it have been low blood sugars-that were steadily balanced by eating? Or is it that the advil and nose sprays are working to help alleve any pain he might have been in? I simply do not know exactly. We can only guess. I can only go by his behavior NOW that one of those was the right thing.

Thanksgiving and more......

2011-11-27T14:48:00.001-08:00

If you are thinking the reason for no blog posts is because of Nick's behaviors, well, you would be partially correct. But, it is not what you are thinking. Life around here for the holiday weekend has been rather boringly 'normal'. Nick is over his cold, and his aggression/SIB (self injurious behavior) are almost non-existant. He has been quite mischievious, but that is completely different.

On Tuesday Nick stayed home from school due to being sick. He only had a minor cold, but with Nick a minor cold can cause just enough pain for him to launch into aggression and SIB. Which means school becomes pointless, as he cannot function. Wednesday, he was a little better, so we decided to try to send him to school. Mike got him dressed and walked him to the busstop. Nick was not having any of it and proceeded to get aggressive towards everyone. So, as the bus pulled up, Mike just held Nick's hand and waved at the bus driver. Nick would miss another day of school. It was a half-day anyway, so no big loss. On one hand I hate that he misses so much school, but on the other hand-what is he getting out of it when he cannot function?

Wednesday afternoon I had a meeting with the school psychologist, his teacher, his speech therapist(at school), and his occupational therapist (OT at school). The meeting started at 11:30, and we did not get out of there until 1:45! During that meeting, the psychologist went over her evaluation of Nick. Of course, with his autism comes along certain sensory processing difficulties, and those of you who know Nick will agree to that. We knew that. We just did not know HOW many difficulties. We had begun to realize that he was developing some light sensitivity at times because he would often turn the lights off at home and at his OT appointments. We also knew that certain sounds he did not like. However, we thought these were rather minor and that he had overcome some of this.

Nick's senses get distorted. He was found to have Auditory Processing difficulties, Visual Processing difficulties, Vestibular Processing difficulties, Touch Processing difficulties, Multisensory processing difficulties, and Oral sensory difficulties.

Basically in his daily life if things get too loud, or there is a lot of movement (i.e. people) he gets over whelmed and cannot cope. When he is put in situations like this he feels unsafe and that is likely to lead to aggression and meltdowns. He wants to go places, but once he gets there, numerous things can set him off. If the place is too crowded, the flourescent lights, the unexpected noises, people talking and moving all around him. It must be like when you have been drinking and the room starts to spin, and people become a big blur moving around you. He becomes anxious because his brain cannot make heads or tails of what is going on. Everything is coming at him at once, and he goes into overdrive. This can also happen when he is engaging in self-stimming behavior. He 'stims' to calm himself, but when it is not working he will meltdown as well. Which would explain his outbursts even when doing things that normally calm him down, and that can make it seem like it comes "out of the blue".

In other ways, visual and auditory senses stimulate him and he will constantly seek input. That comes out as dropping things. Nick will carefully move things to the edge and watch/listen to it drop to the floor. He does this with everything....no matter what it is. He will try to move anything for that satisfactory "drop" to the floor.

We also set up another meeting to go over their behavior plan that they will set up for him(and that his next school can evaluate) and go over a new IEP (also steps for the next school ). That is set up on the 12th.

As far as Thanksgiving went; it went well actually. It was just the four of us and we celebrated with a ham, mashed potatoes, corn, and stuffing. We stayed in our jammies and just relaxed. No meltdowns, no aggression, nothing. Nick did manage to wash his socks and underwear in the toilet, but that was about it. The weekend has been much of the same. Michael playing video games, Nick watching the washer/dryer and rotisserie grill, and daddy and me enjoying every minute of relative 'normalcy'. This is our last holiday in this house, and in three weeks we will be moving. We have a buyer for our Hyundai (we are only taking the Jeep), need to get the travel trailer ready for a trip across the country, and have movers scheduled to come and pack up our house on the 12th-13th of December. It is going to be a very busy time for us, but hopefully for the better.

Hope everyone had a wonderful Thanksgiving! Not sure when my next post will be. I will try to post before the big move!

Goodbye Jingles.........

2011-11-12T17:21:00.001-08:00

A Boy and his Dog.....

Jingles was my very first dog I bought totally on my own. He came to me in 1995, two years before I met Mike, and four years before Michael was born. He was my first "child". He was a mix between a cocker spaniel and a poodle (before that mix became in essence it's own breed) He was smart. I was able to teach him tricks like turning right, turning left, shake, stand, and roll over fairly quickly. In 1997 he was joined by Mike, and in 1998 by our second dog, Maggi. Needless to say, Michael has grown up with those two dogs for his entire 12yrs on this planet. In 2000, Jingles and his "sister" Maggi rode in the car with us from South Carolina to Washington. They even set their paws on the Grand Canyon.

Jingles was also very ornery. The first night Michael was home from the hospital he ran away. Here I was a new mother, walking around the neighborhood at midnight calling for my dog. I obviously had nothing else better to do. He would run away at least once more after that. In fact, the picture above was after I had picked him up from the pound after his last attempt. He apparently thought there were greener pastures aside from our house-either that or he wanted some time to himself and to escape his crazy family. Jingles just had an ornery, stubborn streak.

In 2008, we had to put Maggi down. It was hard, and very sudden. One day she was fine, two days later she was gone. There was a huge hole left in our hearts when we came home that fateful day. We focused on Jingles. Having him there to come home to made things a little easier.

This year getting around became tougher and tougher for Jingles. He often slept in Michael's room for most of the day, only coming out for food/water, or to go outside. He became blind in one eye and hard of hearing. As his mobility decreased, I asked Michael if he ever thought Jingles might want to go to heaven. He began to cry and said Yes. That was about a month ago.

Last Tuesday evening I told Michael to feed Jingles and let him outside. A few minutes went by and next thing I knew, Michael was carrying Jingles to the living room. He sadly told me that Jingles could no longer walk. He set him down on the carpet, and his legs were completely limp. He did not want to eat, and barely drank from his bowl (with Michael bent over holding him up). I told Michael we should do everything that night to make Jingles comfortable. Michael put him in his crate w/his sheepskin and a blanket sewn by my grandmother 25+yrs ago. I then told my hubby that it was time to put Jingles down. Michael spent the night on the floor right next to his beloved friend so that he would not be alone. We all slept with heavy hearts that night.

Wednesday morning at 8:20 a.m. my very-grown-up 12yr old carried his best friend on his last journey. He gently put Jingles on the scale so that the vet could weigh him (he was less than 20lbs by this point), and then held him until the end. My darling boy has lost his best friend. There is not a heart in this house that is more broken than his.

Michael and Maggi

Michael and Jingles

Weekend Wrap up...

2011-10-30T18:51:00.000-07:00

"A Stranger, From the Outside. OOOOOoooooohhhhh!" This weekend was actually one of those weekends where we felt like we were somewhat of a normal family! Which translates to: Nick only had a few meltdowns and we got through two hours at the skating rink instead of one. We also invited another person on this outing! A "Real" person. From the "outside". Outside meaning she had no connection in any way to anything remotely having to do with autism. Which means also that the things we no longer even think twice about, i.e. a 7yr old speaking happy jibberish in the backseat, look very STRANGE to outsiders. See, everything we do revolves around this planet of Autism. We are fluent in "Nick-lish". We can decipher between happy noises, not-so-happy noises, we know when we have to leave a situation immediately, or when we can stay for a while. The way we even speak to him is a lot different than you would normally speak to a 7yr old. Short sentences. Most of the time describing what we are going to do in order that we do it. I always struggle with just how much to tell people. I don't want him to be defined by his autism. I don't want to open every single encounter with the general public with "This is Nick. He is autistic." But, now, more than in the past, his behavior IS being defined by Autism. I feel like our house is on a completely different planet from the rest of the world.

For instance, Halloween. It is still a work in progress with Nick. He enjoys it just a little different than your average kid. He could care less about dressing up. This year he is going as a skeleton. He doesn't do masks, so we usually skip that part. He assumes that if you open the door, that he could just walk right in. He will walk right past the candy (cause he could really care less about that too!) and right into your house. Which is why we have to escort him and hold on to his hand. By the end of the night, he is really enjoying going up to every house and having people give him things. We don't have the 7yr old diving into his candy upon returning to the house either. Michael usually gets most of Nick's candy. We are working on getting Nick to eat even some pieces of chocolate bars. But remember, this is a kid who just a couple years ago started eating his own birthday cake. We are stoked if he eats one piece! He does enjoy the colorful reflective lights that are normally handed out though! Who knows, maybe he will have it down by the time he is 14.

Weekend Here We Come......

2011-10-28T18:31:00.000-07:00

It is 6pm on a Friday night. Therapy is officially done for this week when I have to provide my signature on yet another form. Therapy runs our schedule during the week. We have therapy Mon-Fri. Four days a week it is in house, on Thursdays we have to travel 20 minutes to Occupational Therapy. That starts at 5pm and ends at 6pm. Weekends we get to ourselves, and if it is a good weekend, we get a chance to feel like just your average family.

This was Nick at Occupational Therapy yesterday. He likes to lounge and bounce on the exercise ball they have.

At Occupational Therapy she also works with him on getting him to write or color with a crayon, getting him to put small items in a container(working on using his pincer grasp and fine motor skills). At the end of the session she brings out the Ipad. This is his favorite time of all. She can barely manage to get him to draw a circle using a crayon, but with the Ipad he can do this in a matter of seconds just by using his finger. Holding small items like a pencil or crayon is hard for Nick. He does not have the fine motor skills to firmly grasp these items. It is a work in progress. A lot of kids w/autism do not like to write or color for that very reason.
Nick, we suspect is also getting more sensitive to light. Within five minutes of OT he went and turned off the lights. They remained off for the duration of therapy. We also have had to turn down the lights at home. Flourescent lights hurt his eyes, as they do with many other autistics. These are just some of the things that can make daily life difficult around here. This week has been good. Not too many meltdowns, a rather successful trip to the dentist on Wed(despite all the screaming), and even a few smiles!

CBS News video on the Ipad...

2011-10-25T21:07:00.000-07:00

Nick LOVES his Ipad! It has been the single most motivating thing that has been used during his therapy sessions. He loves the picture app where he can turn the camera to himself and look at himself in real time. He goes on youtube and looks at videos of zambonis. In therapy he writes letters on it and draws.
WARNING: You might need some tissues!

Too Tired to think of a title.....

2011-10-22T19:38:00.000-07:00

I have been working long hours the past two weeks with no days off; so I am a little worn out right now but I thought I would update everyone while the boys went out for a drive. Yep, hubby took Nick out for a while because he actually said he wanted to go bye bye. Not really sure why. He had just come out of a complete meltdown, and once again I think his other tooth coming in is the cause. Ever since he has lost the "crud" from two weeks ago he has been perfectly fine at home. Still not so much at school though. Not sure what to make of that. After his suspension, they sent home two packets full of questionaires they need answered. I have not had a chance to fill them out just yet because I have been working so much. My plan is to sit down tomorrow and accomplish that!

Yesterday was my first day off, so I decided to take both my boys to school. What a rare treat that was! Nick had some french toast sticks, Michael had some cereal and all was happy. I drove Nick to school first since his school starts at 8am. We get to his class, and he gets settled at the table next to another student. They are having their little breakfast. Mind you, it is 8:05am. Nick gets offered milk or juice? He takes Milk, but does not drink any of it. His teacher said this was happening quite a bit. Nick is not eating as much as he used to. Hmmm? Really? He devoured his french toast this morning. He has been eating entire Happy Meals and then still wanting more. But, teacher says he is not eating in school and thinks he may have a toothache??? So, again, the french toast this morning was devoured without any hint of pain. And I; of all people, should know when this kid is in pain....he hits ME. So, around 8:10 a bell rings. Teacher announces it is time for reading and that the kids must clean up their breakfasts. (10 minutes to eat??) Upon this announcement, another teacher walks in the room with a few more kids. The noise level increases, and Nick begins to lose it. He hits the aide next to him, I walk over and tell him NO. He hits me. He needs to escape this chaos as I can clearly see it is bugging him. His teacher asks him if he wants to go and lay on the mat. He says "Mat". It is 8:15-8:20 and he is already overloaded. No one seems to know why this is happening?? I want to scream "HE HAS AUTISM!! HE IS IN OVER LOAD WITH ALL THIS CHAOS!" how can they NOT see it?? I had to leave my little man lying on the mat, trying his hardest just to pull through. I gave him a hug and told him to simply do his best, and that I loved him.

Today we went to watch Michael in his skating class. Hard to believe he only started skating a year ago, and now wants to do it all the time. He is getting so good! Today he attempted a jump/spin combo but ended up falling down pretty good. Nick saw him fall, and bless his heart, he kept asking if we were going to get a pillow?? He then asked if we were going to the doctor. Michael was a little banged up, but he is fine. Managed to get Nick to skate on the ice one time! He was mixed with being petrified and happy at the same time. Anyway, I was happy to just get him out there, even if it was for only one time around.

He had a few meltdowns today at home. I know the last one was due to me telling him he could not have his yogurt until after he finished his dinner. Anyway, I am tired, and I have to get Nick ready for bed. It is the only time he stops going 100mph, and I can get any sort of 'me' time.

The Crud....

2011-10-09T09:39:00.000-07:00

Ladies and Gentlemen, the "Crud" has officially landed at our house. The one infected is of course Nick. Of COURSE! He seems to be the Cruds favorite party place; lest you forget we delt with Cruds relative 'Sinus Infection' this last summer. Anyway, Nicks way of dealing with the crud that is in his nose is to blow it.....everywhere BUT a tissue. It is pretty safe to say that his face has been oozing goo for the last two days. Eeeeewwww! We have not seen many meltdowns resulting from Crud like we did from Sinus Infection, so if there are blessings to count, that would be it. Of course there is a flipside. All of the medications have done WONDERS for his GI tract. NOT! Let's just leave it at the word NASTY.

This week also marks the first time any of my kids have been SUSPENDED from school. Yep, Nick took that one too. I have yet to figure out how suspending an autistic child from school will make him realize what he did was wrong? Here is the low down I got from his teacher when I went to pick up ~~my little troublemaker~~ Nick. He was in music with his classmates. Something happened (could not explain WHAT) and they say he just smacked the teacher in the nose. The teacher then turned to (supposedly) protect another student who is in a wheelchair(not clear on whether Nick was actually going after other kids-at home he generally will not attack Michael at all-no matter how much Michael gets in his face) and Nick continued to smack the teacher. They say he would not stop. Oh, and something about music teacher saying there needs to be consequences. Well, what shall happen next week say when he goes back to school and does this again? You CANNOT punish kids for acting on something that is sensory related. I highly doubt he was acting out of hatred for his music teacher. Nick is autistic, with very limited speech. He cannot effectively communicate if something is bothering him. When things get overwhelming it is a fight or flight response. Which is why at home, he has a place that he can go to that is HIS space to calm himself down. Yes, Nick has hit me, but I have not turned my back on him so that he continues hitting me. My first reaction is to grab his hands to prevent him from hitting me over and over. I grab his hands, and escort him to his spot. This works. He stays in there until he is calm enough to come out. And that is not for me to decide, but him. That can be five minutes, 15 minutes, or even 30 minutes. However long it takes him. I told his teacher of our "area" where he can do this. She said she would try to create one of those areas in class. Which, I am afraid won't work if it is IN class. I don't think the right thing to do was suspend him, so I am going to contact his BCBA and maybe ARC of Washington to see what else can be done on his behalf. His teacher was developing a behavior plan (why one was not already done....I don't know).

Now, to say a heartfelt Thank You to Steve Jobs. Steve was the co-founder and CEO of Apple Inc. Your Ipod, Iphone, and Ipad make life just a little bit more fun for the typical person. However, to the Special Needs world, it is the Ipad that has done absolute wonders. The Ipad has given non-verbal children a voice. For Nick, his Ipad has been the biggest reinforcer in ABA therapy. He LOVES looking at pictures that we have on it, he loves the Photobooth App in which he can do all sorts of effects on pictures, he has learned how to turn it on and find the right icon to what he wants to do. He counts things, puts puzzles together, draws, plays music, and writes letters. He does all of this just by using his fingers. Many autistic children/adults find it hard to use writing utensils such as pencils or even a mouse on a typical computer. So, the fact that Nick can use his hands and fingers to make letters or numbers is the best thing in the world to him. He has everything available with just a simple touch. And believe me, he has also learned to feed his own obsessions using the Ipad. He has learned how to use You Tube to watch numerous Zamboni videos! Picture schedules are easier to create when all you have to do is take a picture(Our Ipad has a camera installed) and then put it in the schedule within seconds. I would normally not even pay attention to such news, but this I have thought about all week. RIP Steve Jobs, and THANK YOU. You will never know just how much your technology has meant to us.

I Think We Are Back On Track.......

2011-10-01T10:47:00.000-07:00

Dare I say that too soon?? For the past few days Nick has been back to his old self. He is using words appropriately and even told the dog "In the house!" as he held the back door open. A couple days ago he came to me with his toilet wipes in hand told me "There's poop!" and bent over so I could wipe him. In ABA he is now learning to identify words on flashcards. They started with his favorite....Zamboni. He is now up to about three words he can identify. This morning he had a minor meltdown mostly I think because it was out of the 'norm' to find me laying on the couch. It was sweltering in our bedroom, so I came out to the livingroom and turned on the fan early this morning. We had a repairman come out and fix our thermostat, and they fixed it alright. A couple of nights last week dipped into the 40's and our old thermostat was just blowing in air. Needless to say that left us shivering at night and in the early morning. Apparently our thermostat had been worn out from the cover being constantly ripped off the wall during our summer of meltdowns. Anyway, now we have the opposite problem that we can't seem to remedy. It is HOT in our house. Today we need to go and get Michael some new hockey/ice skates. He outgrew his old ones over the summer, and now he has expressed that he wants to get on the ice again. Hopefully the rest of the day goes as planned.

I'd Love to Catch a Break...Sometime in the Year 2011...

2011-09-17T22:08:00.000-07:00

I think we are now on Round 3 of antibiotics. Everything was going along just fine for the month that we were on them. I was hoping that this would all be just a distant memory by now. It nearly was. Until Wednesday. Wednesday we once again started getting calls from the school. Nick was having more meltdowns and self injury. He was hitting kids on the bus and apparently had to be restrained. Bus driver said to the teachers who came to pick Nick up once he got to school that it was "not her job to restrain him". Really?? I KNOW it is not your job to restrain him, but what the hell do you expect us to do when he is not with us?? Kept him out of school on Thursday. He was ~~fine~~OKAY. Had a couple of tantrums but seemed to be handled within minutes.

Friday he woke up in a great mood! Was eating waffles, drinking his milk, and all around happy. I thought, ok, we are back on track. I call the school a couple hours later to see how he was doing. "Not good" his teacher told me. They were having to separate him from the other kids so he would not hit them. He was having meltdowns again. I ask if it might be helpful if I go down there and give him some Advil. She said that would be great, and with that I left. I brought the Advil to his class and gave him some. I stuck around for about an hour or so to see if it took effect. By the time I left he was happy, able to participate in class, and was laughing. GREAT!

Friday afternoon he came off the bus and just looked drained. He let the bus driver give him a hug, I guess to sort of apologize to her for his actions on Wednesday. He came home and was not himself. He refused to eat and drink--even his favorite foods. He got through therapy fairly well, but after that it was downhill. I tried to get him to drink even a little bit of milk. Milk is his fave drink! He normally gulps that up in seconds! He would not even hold the cup to his mouth. We had to give him milk through a syringe. He refused dinner--even though he loves pork chops. He barely ate even his yogurt; which is another HIGHLY preferred food. Something was wrong. He was also going downhill as far as his behavior. We got him to bed, but he actually came out screaming/crying a few minutes later. This was another abnormal thing. He usually stays in bed once we put him down for the night. He got up a couple times, but finally went back to bed for the night around 9pm.

This morning he was a total wreck. He did not want anything to eat or drink, and had numerous meltdowns. I was DONE with this shit. We all climbed in the car and headed off to the Emergency Room. AGAIN. For the second time in two weeks. The doctors could not figure it out. Here is a kid who does not look sick, but his behavior says otherwise. It also does not help things when Nick is calm and quiet everytime we have been there. We were adamant that SOMETHING is wrong with him. We told them of his sinus infection that was only caught with an MRI that was done for a completely different reason. That he had been on antibiotics for a month and he was happy. And now that his antibiotics had ended their course on the 15th of Sept, things were once again going south. There must be some remaining infection. We asked if they could do X-rays to see what could be bothering him. We were told that x-rays would not reveal anything in the sinuses. That the only way to see those were from CT scans or MRI. These were both out the window by that time because he had already had bits of juice and applesauce, and they would have to sedate him. We came out of there a little frustrated, but at least we had more medications to give him. We thought once we gave him those, it will be fine again. NOPE.

We came home and gave him a dose of amoxicillin and zyrtec right off the bat. He was good for a while. We started to breathe a sigh of relief. Until he went into another meltdown. And then another. And then another. It did not stop. The only thing that stopped him was to put pressure on his gums. Mike had a hunch that he had to follow up on. Nick's top teeth had fallen out MONTHS ago. Just recently we have been able to see just the teeniest amount of adult teeth showing through. Are you fucking kidding me??!! Mike proceeded to call around to find a pediatric dentist who might A) be able to get us in this weekend, or B) confirm his hunch that this could be the culprit. After talking with someone, they confirmed that it sounds like a classic case of 'teething'...albeit on a 7year old. Yes, it now appears that my 7 YEAR old is 'teething'! OMG. Makes perfect sense with all his symptoms. 1. putting hands in mouth 2. refusing to eat/drink 3. Cranky, cranky, cranky 4. Feeling better with a cold washcloth/or vibrating tooth brush in his mouth.

I want to crawl into a hole in the fetal position and not come out! Did we not have a bad enough summer that the fall now has to suck too??!! Can't my kid and his exhausted parents get a freaking break??!! I fucking swear!! And yes, I realize I am swearing an awful lot in this post, but FUCK!! I feel like we barely survived with the whole sinus infection thing, now we got this new problem. And it is a doozie folks. No amount of antibiotics can kill teething pain. We bought Orajel; but honestly the shit wears off fairly quickly. I sincerely hope his teeth erupt over fucking night, 'cause I have no idea how much longer we can withstand this crapola. And yes, to cover our bases we have an appointment with his doctor on Tuesday, and likely a dentist appointment before the end of the week.

I Love This Song......

2011-09-06T19:05:00.000-07:00

This song is from the Disney movie "Tarzan" sound track. This came out the year Michael was born and I have loved it ever since.

As for us, we are in the middle of Back to school craziness. I can't believe I will have a seventh grader and a second grader tomorrow! Hopefully daddy will get some pictures that I can post tomorrow. Both of them seem to be excited to get back to school; I think they were getting sick of each other! LOL! Anyway, not much to post about tonight, enjoy the song.

Goodbye Summer....

2011-09-04T15:14:00.000-07:00

Oh Summer; how I will NOT miss you this year. You have not been your best. You have been about neurology appointments, MRI's, EEG's, increased medication, decreased medication, meltdowns, self-injury, lots of aggression, and a fucking sinus infection that won't leave my little man alone. I am ready for you; summer; to go away. Despite all your warm weather and cloudelss skies, we were in the middle of a war zone. We could not fully enjoy all you had to offer. Maybe next year we will get along again. Until then, GOODBYE! Bring on FALL!

And the cycle continues.....

2011-09-04T11:09:00.000-07:00

We are on our last few days of amoxicillin. I actually had to get a whole new prescription from his doctor because the pharmacy would only fill up enough for eight days in a row. We are actually on refill #3. He had been doing so good the last couple weeks that I actually thought this whole ordeal might be over. How naive was that?? By the time I got home with the new prescription, he was once again in scream mode. It has been a couple of days since then, and we still periodically have episodes. Not nearly as often as before, but they are still there. He sounds a little 'nasal' when he talks still. Yesterday I went out and bought him some more advil, more allergy medication(comparable to the children's zyrtec he had been taking), and some saline nasal spray. I gotta tell you, I am a bit OVER all this. Knowing our luck, we will get him over the sinus infection right before the next cold & flu season. So ready for the poor kid to catch a break.

We DO have moments of happiness! Such as yesterday when he was watching the zamboni videos on you tube.

I did manage to go out with Nick on Friday. I think he was pretty over staying in the house, or not going anywhere except for doctors offices or to the dentist. I was a little nervous about how it would all go. First we went and filled the Jeep up with gas, then we drove to Nick's school to get our school supply list. By that time we had about an hour and a half until his therapist arrived, so I decided to stick close to home to shop for some school supplies. We got through that, but his anxiety level went up as we headed to check out. I had him in the cart and he was happily playing with his folders; but as we waited in line he started doing his "I am DONE" vocal stim. I thought the cashier would never get done, as it seemed to take an ungodly amount of time to get us through. I was silently rejoicing as we escaped there with no meltdowns. It was a good day!

He then went on to have an awesome day with his therapist. I felt it was about time we had a run of good days.

One More Week......

2011-08-29T18:43:00.000-07:00

That is all that I have left to survive the summer. I have to keep telling myself that. You see, ever since little Mister has been feeling better, he has been getting INTO everything! Nothing has been safe. Whatever survived his rages earlier this summer, is now trying to survive him feeling 100% again. Heck, I am trying to survive him feeling 100% again. The Wii has taken up permanent residence behind the tv. Honestly, it is safer there. The remote controls have seen far better days. Most of them are minus their batteries and backsides. We had to install some new hardware in the house to actually keep Nick IN. We are now the proud owners of two golden flip locks installed at the top of two doors, and three door alarms. Nick took a liking to visiting various people in the neighborhood.

Then yesterday this happened. It was a normal Nick day of him doing "big no-no's", and laughing. Then suddenly his laughing stopped. He came to me twice wanting me to fix his owie. He pulled my hand to his abdomen. He was hanging on the baby gate and seemed to be in some pain. He went and got the first aid kit, and attempted to put a used (don't ask. I have a house full of boys.) band aid on it. He then turned as pale as you see in the pic above. I thought it might be worth getting checked out, and Nick was not opposed to going to the doctor.
Three hours and a set of x-rays later we were discharged with a much better child. We think he was simply a little Backed Up in there.

Right now he is sitting on daddy's lap laughing and enjoying being tickled.

What's UP Doc??

2011-08-21T17:16:00.001-07:00

Our new nightly medicine requirements. 1 syringe of children's Advil for pain(blue), 1 syringe of Zyrtec to open up nasal passages (clear), and 1 syringe of Amoxicillin to clear infection (pink). He actually takes the amoxicillin 2x a day, and the Advil as needed for pain. His Risperdal is broken up into two doses as well-half a pill in the morning, and half a pill in the evening. All of this right now makes Nick a happy camper.

Wednesday morning was our doctor appointment. Mike stayed home with Nick because honestly, he was not fit to go anywhere, and CERTAINLY not back to Madigan! His BCBA (I will call her A) went with me. A was there to get insight on what the doc prescribed we do as far as Nick's behavior, and to help bring up anything that his therapists had noticed that we had not. At this time we were still thinking it was simply that the Risperdal had quit working. Boy, were we wrong!

Doc listened to everything we described and looked at Nick's MRI (which had been done a whole MONTH prior). One thing stood out. Nick's sinuses had looked "junky" even then. Based on everything we described, and his MRI, he put the pieces together. Nick had sinusitis. His Self-injury and aggression was simply his way of dealing with the intense pain he was in. It all started to make sense. How his behavior had steadily gotten worse over time, how he no longer enjoyed going places, it was hard to get him to eat, etc. All he wanted to do was lay in his room and be alone. Which, in the end, even that was not much of a reprieve.

Now that we are finally getting to the root of the problem, his behavior is slowly returning to normal. I say slowly because once the pain meds wear off, we are right back to where we started. We have had to really stay on top of that too. Once he has relief, he goes back to being happy. His appetite has returned with a vengeance, and he is once again wanting to go outside and play in the sprinkler! He is also using his words more. Amazingly, through all that pain, he would still stop thrashing around to get up to use the potty. I am hopeful that this sinus infection will clear and he can once again be happy and pain free.

From Bad to Worse......

2011-08-11T21:19:00.000-07:00

In the weeks since I last posted, things have gone from bad to worse. Today we had to remove the door to Nick's room. As well as any toys that remained in there. We dismantled his bed last weekend. He goes into a rage and just destroys his room. So, in order to prevent any more damage to himself and the house; everything is gone. The reason we took his bed apart was because he was moving it all over the room-all day long. So now he sleeps on the trundle bed that was under his big bed. He had an all day long meltdown today. I have e-mailed his doctor and he wants to see us ASAP when he gets back in town next week. The actions Nick is currently doing are listed as severe side effects from his current medication. Until we can get in to see the doc to discuss weaning him off of Risperidal slowly, I have bought some melatonin to calm him down. Yeah, we gave our child Nyquil tonight JUST so he would stop his psychotic rage and calm down. Judge us ONLY if you have ever gone through anything remotely close. After a day long scream/self injury/rage fest you would probably do just about anything for some peace. And we did. After a dose of Nyquil Nick was happily eating french fries. He has not been HAPPY to eat for a MONTH!

We had a lengthy discussion with his BCBA yesterday, and she agrees that Nick is on a downward spiral and does not enjoy much anymore. She wants to come with us to his docs when we go. They took days of data which would be useful to getting just the right combo for Nick. On top of that, the neurologist called. His Fragile X test came back Negative. YAY!! His other labs have not come back yet. We moved on to the EEG. They DID get something out of the EEG; but not enough to say for sure it is seizure activity. If he does continue to have those episodes, we can discuss seizure medication. BUT, since we lowered his dose of risperidal, those episodes have disappeared. YAY! Just bear with us, as I may not be posting all that much until we can get this under control. We are working on it.

I Feel Like I am Lost......

2011-07-31T21:27:00.000-07:00

And I have no idea which way is 'home'. Nick's behavior can turn on a dime. One minute he will be happy and chatting to himself, the next minute can bring on absolute rage. In which case he will throw things, destroy his room (or whatever happens to be around), or lash out at me. The last one has me at the end of my rope. He will not lash out at anyone else in the family but me. Hubby and Michael seem to be immune. But me, I get the brunt of his anger. I don't even have to be doing anything to the child, he will seek me out and hit me. I am at a loss. We went down on his medication because it made him twitch. Which, in all honesty, it was producing the same results. His behavior was no better. We have lessened his dose-the twitches have diminished..YAY! But we are still dealing with behaviors. Or more or less, I, am dealing with behaviors. He does not do this with his father or brother.

I feel like I have failed him somehow in the communication department. I read all the time where kids YOUNGER than Nick are advancing so much in their communication by using the PECS (Picture Exchange Communication). We tried that with Nick-but he never understood it, and the cartoon pictures meant nothing to him. We focused more of our efforts getting him to use words. Which he does-when he can organize what he wants in his head with words. When I try to talk with him as he flies off the handle-all I get is kicking, screaming, and head butting. However, Mike, can do this and actually get a response from him. *I* try to, and, well, you know what happens.

His behavior HAS to get better. But I don't see how at this point. We have used a picture schedule for his ipad, but he is not allowed constant access to it, because he tends to throw things during rage. I can try to make a daily schedule for him during summer, but it will more or less depend on Mike to stick to it. And since he has no problem with daddy, I don't see it happening.

Nick used to like going places. A couple of weeks ago I took both boys to Target. Nick wanted to go. That all changed as soon as we got inside the store. He proceeded to meltdown. We had to leave. Now, IF he goes anywhere with us, it almost seems like he is having a panic attack. It did not help matters much when he has had so many doctor appointments either. So now, going out PERIOD seems to stress him out.

I just don't know what to do anymore. I feel like we are hanging on by a thread; and literally we are when you think about it. We just try to make it to bed time each day. Today was awful. And I don't know how much better tomorrow will be.

EEG

2011-07-26T20:41:00.000-07:00

Today was our EEG appointment. I am emotionally and mentally exhausted. It was horrible to say the least. Nick was fine the whole time the tech was putting the leads on him. Then, as we asked him to get on the bed and lay down, all hell broke loose. FOR OVER AN HOUR! He was screaming, kicking, hitting, and head butting. After that did not work he began screaming and spitting. Fucking Lovely. As if that was not enough, he began to injure himself by banging his head against the bed, and biting his cheeks. Did I mention it was horrible??

Anyway, after enduring over an hour of screaming, we decided to call it quits. Nothing was getting accomplished. He was ripping leads off his head with all the thrashing he was doing. I am not sure what they got, but she said they did manage to get some stuff. The tech saw with her own eyes the twitching he does-as he did it in the chair just walking into the office. This is still a daily occurance. I ended up sobbing on the techs shoulder because this.is.a.daily.occurance. as well.

I will end this post by saying how much I F'ing HATE autism right about now. I am too exhausted to post any more tonight.

Uniquely Autism

2011-07-14T15:16:00.000-07:00

Here is the latest pic I have of Nicks' re-decorating. He goes around constantly asking for his pictures. I take them out of his room when he is mad for obvious reasons...he would likely destroy his room.

I thought I would try to find some more pictures of his 'uniqueness'.

We had his MRI on Tuesday morning. That is an experience I hope to never have again. Nick is one irate little boy coming out of anesthesia that is for sure! He screamed at the top of his lungs all the way out of the hospital, all the way to the car, and the entire ride home. He did not stop until he puked. It was a mentally draining day. After a few hours he was back to being himself. The good news is that his MRI came back normal in the brain, although he did seem to have some junk in his sinuses. So, we still do not know what is causing his twitching. I think I might be losing my mind. His Dr sees these, and we think they may be some sort of tic. The thing is, they prescribe Risperidal a lot of the time for tics.???? He is having these ON the Risperidal. I have no idea anymore. We have his EEG still scheduled for the 26th. He does not just have these episodes when going to sleep either, he has them throughout the day...while he is standing up, eating, doing therapy, etc. I just don't know.

A Very OFF Day......

2011-07-10T13:44:00.000-07:00

Saturday morning (the morning after I shot the video you see below)Nick woke around 5am. He was probably up even earlier than that, but I did not hear him until around 5am. Told him to go back to bed. He stormed off to his room, where he remained for an hour. At 6am the meltdowns started. We got control of those and he was okay. Not great; but okay. He ate some breakfast, and just wanted to be in his room. A couple of times he went pee on the potty, and then back to his room. He was in there for a while so I decided to check on him. He had fallen asleep. Shit! Need a diaper on him if he is going to sleep. I manage to put a pull-up on him, but I woke him up in the process. Oh well. He remained awake for a couple of hours, and I put his underwear back on him. Around 11:30 am I went to check on him again and he had once again fallen asleep. Poor thing must not have gotten ANY sleep the night before! Nick never falls alseep in the middle of the day. I get him another pull-up. He wakes up slightly, but stays in the bed. He fell back alseep and slept for FOUR HOURS!!

After he woke up four hours later, he seemed better. Today he has been back to normal. Fairly happy, chatty, and smiley. I can't help but wonder what went down with him Friday night to cause what happened on Saturday. I sent the video to his developmental pediatrician, and plan to call his neurologist tomorrow to see if I can show her. We have his MRI on Tuesday morning at 0930. I would like some answers.

Nick at bed time.....

2011-07-08T20:54:00.001-07:00

This is why we are seeing a neurologist. He is having a lot of these little episodes recently. The video is around 12 minutes long, but gives a good visual description whereas words just cannot do it.

Despite these, the potty training is going really well!! He is down to one accident the past two days and is now coming to get us when he has to go! Thanks to everyone for all their support!!

Just Say NO!

2011-07-06T11:43:00.000-07:00

To diapers. We are on Day 2 of potty training. All during Day 1 Nick asked for a diaper. He got mad when I told him No more diapers. Potty trips every 5-10 minutes. Day 1 gave us 3 accidents. I went and bought him more training undies yesterday and did about 2 loads of laundry. One of those accidents was a number two. Glad I was not here for that one. Hubby had to take care of that. Our schedules are clear until tomorrow afternoon when he has OT. We will wear a pull-up for that. So far today, I think he is starting to like running around in just a shirt and undies.

Christmas in July!!

2011-07-03T20:09:00.000-07:00

That is surely what it has felt like around here the past two days. We finally got the second installment of our income taxes (we did not file for 2008-I was deployed at the time) last week and the very first thing we bought was an IPAD. I can't tell you how long I have wanted this little thing. It has been in our lives for a mere 24 hours and it is already making its mark. Let me just show you.

This is Nick having fun with one of the apps on his IPAD. On this one he has to put the puzzle pieces together to make the full picture. It is rather fool proof, as the piece will only go in one spot. The computer says the name of the sea animal, then lets him put the pieces in.

More of the same game.

This is a writing/spelling app in which he has to trace each letter in order to spell out the word. Once all the letters are traced, a picture of the object shows up in the middle of the screen and the screen shows the word in his letters that he 'wrote'. We are still getting the hang of this game and right now requires a lot of hand over hand.

This is the same app; but instead of a word, it is just one letter.

This is a simple drawing app that he really likes.

I can't even describe how helpful this little gem has been. It really does make things so much easier! I can now create a visual schedule in a matter of seconds!

Not to mention the ABA applications it has. Nick can have fun playing the 'games' but while he is playing he is having to match pictures with words, use his point, and is learning new words in the process. We have been working full steam on the communication apps. Did I mention this can double as an assistive communication device??!! The limits seem to be endless right now. He beamed when he realized he can use this to communicate what he wants with us. That was a smile I soon won't forget. Personally, if you have a very verbally limited child with autism, I would highly recommend getting one of these. The ease of operation is what gets me. In order to make a story board all I have to do is open the specific application, and choose what I need. There is a camera installed in the IPAD and if I want to take a specific picture, I take the picture, and it is immediately available to use in the story board. VERY SIMPLE!!

While Nick got the IPAD, Michael was able to get an IPOD which he had been begging for a long time. He is 12 now, and just like any other 12 yr old he likes to listen to his music. He is quite happy with it. He also got a new hockey helmet because his other one was worn out from last season and was starting to hurt his head. We are all doing great and are enjoying the warmer weather finally! It took a while to get here, but now it is here! Don't know what we will do for the 4th yet, but it will probably involve fireworks at some point. I have the next two weeks off so I am going to try and get Nick scheduled for his MRI and blood draw during that time. The EEG is scheduled for the 26th. Other than that, a pretty un-eventful month. Hope everyone has a great 4th of July!!

At a Crossroad of Some Sort

2011-06-19T10:20:00.001-07:00

These big decisions are never easy. The really BIG one we have been contemplating the last few weeks is where to move after I retire? This has almost been discussed at some points every day. Where do we want to go?? This question was easier to answer until I found out that Nick will no longer get his ABA covered by TriCare when I retire. He is covered right now under the Extended Care Health Option (ECHO), but that benefit is not extended to retirees. So that information threw off our whole plan, and we have had to come up with a newer plan. We looked up states that required health insurers to cover autism treatments. (Washington was not one of those states) Reading through all the legal/medical terms got to be quite depressing. Most of those inferred that through loop holes, companies could deny you coverage. They placed catastrophic caps on dollar amounts, or individuals had to be a certain age etc. So, what did I do? I posed a question on one of my autism bulletin boards that I am a member of.

If you could, where would you choose to live? Two states seemed to come up the most often. One of those was a state that we had not even considered. PENNSYLVANIA. It seems that state is one of the best for autism services and coverage. I got in touch with someone who currently lives in PA and she confirmed what they were saying is true. We started looking more intensely at other things like housing, schools, and yes, we had to look at hockey. All items there were good. I started looking at jobs on line and found a bunch of jobs are available with the VA. So, why am I still so conflicted??

Our families reside in the South East. Not the North East. It would be awesome to have family near us to help out. But how much would that cost Nick? He is my family too. I have also seen the effects of a school that just does not 'get it'. It was horrible. He was left to stare out windows all day simply because it was 'easier'. I don't want that to happen again. He lost an entire year at that hell hole.

So, I will pose the question now to all out there in Blog Land with kids on the spectrum.

If you had your pick, where would you live?

Welcome to MY World.....

2011-05-31T19:53:00.001-07:00

Since autism came into our lives 5 years ago, it seems that I have developed this sort of rather twisted,deranged sense of humor. If you don't have humor, well, trust me, you NEED humor to deal with this sometimes....ok; ALL the time.

I was sitting at work this morning and we were having our normal meeting. I don't know how we got on the subject but we just did. Suddenly he divulged to me that he was on Ritalin as a kid. I kind of chuckled that evil, sinister laugh. Oddly enough, once you tell people you have to go and pick up your childs ANTI-PSYCHOTIC medication today, they kind of leave you alone. They are not sure if they should take you seriously or not. Shuts 'em up real quick. And it gives you a bonus look of "OMG!"

Welcome to MY WORLD MoFo!!

(maybe I should make this a weekly title every Monday?? Feel free to add your own!)

Dare To Complain.....

2011-05-30T09:57:00.000-07:00

I came across something on the internet this week that really pissed me off. It was basically someone saying that kids with disabilities(especially mental...like severe autism) do not belong in a mainstream school. They were wondering WHY don't they go to a "Special School" just for them? Why don't us parents take care of them at home all day instead of sending them to school...afterall, what are they getting out of being there? And that they were 'jealous' because we get free things like ipads, and swimming pools for our disabled darlings and that it is all rainbows and skittles.

So, let me get this straight. Certain people of the general public are JEALOUS of me because they THINK we get free stuff??

How about the fact that I have a 7yr old who still shits his pants? Jealous of THAT?
How about the fact that I have a 7r old who takes an anti-psychotic to control his aggression and self-injury??
Jealous of the "free" babysitting I get 4 days a week? Yea, ok, those "babysitters" are his therapists. And those two hours are two hours that Nick is gainfully occupied by someone else, and we get a break from doing damage control.
Jealous of the constant phone calls from the school saying that your son has once again bit himself and is bleeding.
Jealous of the fact that our house has holes in the walls, doors falling off hinges, cabinets broken, and locks/gates up everywhere to keep your 7yr old from escaping?
Jealous of the numerous doctor appointments we have had to discuss things from eating to seizures?
Jealous that we have spent hundreds of dollars on dietary supplements for things like increasing his speech, aiding his digestion, removing toxins, only to have none of it work?
Jealous of the fact that we are in a constant state of 'readiness' due to Nick's changing moods?
How about the fact that his door obsession is now in like the third or fourth YEAR? The cabinets at his school have been tied together, and our kitchen is completely gated off to him. Otherwise he will do nothing but slam cabinets ALL DAY. He has slammed his bedroom door so hard the doorknob went through the wall.
Or how about that he has chipped away at the paint and drywall in certain areas of the house? The fact that he ripped up the baseboards in our last house?

So, SCREW YOU! Go ahead and complain about all the 'freebies' we supposedly get. Because in reality, all the 'freebies' are coming at a huge expense. OUR CHILD.

News of the Day......

2011-05-27T18:28:00.000-07:00

Not only have we seen his smile making more appearances around here the last couple of weeks, but there have been steadily less TEETH in that smile! Last night I was finally able to pull out that pesky loose top tooth. This ranks up there with those gummy smiles he would give as a baby. I am loving these gap toothed smiles even more :)

Meltdowns, twitches, and on and on....

2011-05-11T21:40:00.000-07:00

I apologize for the lack in blogging, but honestly, after dealing with Nick for the last month, I just have not had the energy. Long story short, we have had to increase his medication and he has developed a twitch. I am not sure if it is a side effect from the Risperidone, or just something he does himself. He just sort of shakes. I have spoken with his doctor about it and showed him a video, and he has agreed that it should be checked out. We have an appointment with a neurologist next month. It is the same neuro that evaluated him for seizures a couple years ago. Nothing was found, and they seemed to disappear. Until the last month or so. Here is the video I sent him. You will see him do a series of 'episodes' after he comes back from getting milk.
We have also been going through worsening behavior. He has been very unstable emotionally since March. He completely loses control at the drop of a hat, and we had numerous calls from his school. His poor legs and feet were a mess. In the process of a meltdown, he would dig his toes/hand into the top of his foot, and scratch up his legs. His teacher would call saying she could not handle him, and sent him to the health room. Which he would proceed to bite himself and destroy the room. He hated the health room, and that caused even more disruptive behavior due to being a change in his schedule. He became extremely rigid in his routines and would meltdown at the slightest change. This is what I mean by meltdown. This is not anything like a typical tantrum.
And this would happen anywhere. He had a meltdown on Mother's Day simply because I wanted to take him for a walk. He kicked, hit, banged his head, screamed bloody murder within 2 minutes of being outside. They have been steadily increasing since March. This is why we have increased his medication by .25mg. He is now on Day 3 of the increase and we have seen a drastic change for the better. Anyway, just wanted to let everyone know that we have not fallen off the face of the earth, and we are still here. Hopefully things will be back to normal very soon. I just hate having to give my 7yr old an anti-psychotic so he can actually enjoy life like every little boy should.

Update!!

2011-04-16T20:51:00.000-07:00

Seems that after that post, things went down hill again for Nick. We were seriously worried about him. He bit his cheeks at school so hard they bled. That led to a call at work from the school nurse, who was pretty adamant that he be taken home. They did not want him to go on the bus hurt and bleeding. So, I went to pick him up. He ended up staying home from school most of that week due to behavior/cold or allergy symptoms. It was like a vicious cycle. Things got so bad that we were thinking he could be having small seizures. He would cry, put our hands on his head, and then attempt to bang it. He was literally kicking, biting, hitting, screaming on a daily basis. Dinnertimes were awful. He would scream, bite his lip, and hit himself or me. He did not want to eat anything. It was getting pretty dire around here, and I just did not have the energy to blog. I was trying to figure out what the hell had happened to my son.

Best we can tell right now: Nick was on the mend until we had a weekend of hockey tournaments. He got sick, and missed that week of school. Then came Spring Break. He seemed to be doing ok during this time. Still not 100%, but better. Then we had another tournament. He was fine the first night. Then, something in the rink bothered him and he started melting down. This carried over to anything dealing with our home rink(which he was used to and enjoyed) due to anxiety. He did not know if what bothered him at the other rink-would bother him at our rink. So, he did not want to be there....at all. This led to him kicking,hitting,screaming, you name it. Around this time he also developed a loose tooth. I think this is what fueled the dinner time melt downs. It felt strange/hurt to eat some things. So, once again he grew anxious and did not want to eat anything he deemed *suspicious*. It was hell. For us and him.

Since I refused to spend our time at the rink sitting in the car, I got up the nerve to just *remind* him that he liked this. I took him in the rink screaming and all. We were going to get through this no matter what. I walked with him up the stairs to the viewing area (mind you, he was still putting up a big fight), we sat down on the bleachers and I held him. I held him while he screamed and fussed. It took about 20 minutes, and me hugging him as he laid on me for support, for him to lose his anxiety. He has since been ice skating twice there without incident.

His tooth is still loose, and we are still dealing with him being uncomfortable sometimes during mealtimes. However, he has persevered and the dinner time meltdowns have stopped. Until the next time.

This week, his scores in his home ABA program have returned to pre-regression status, and he is even doing things he was not doing before all this!! His language has returned, and he is once again very chatty throughout the day. We had an OT evaluation last Thursday, and he will be getting one hour of OT a week now. That is wonderful news! He needs immense work on his fine motor skills like coloring and writing. Things are looking up again!

Nick is BACK!!

2011-03-27T20:11:00.000-07:00

I am happy to say that we finally have the REAL Nick back. Last weekend was a busy one with a hockey tournament in Bremerton. Our first game was Friday evening at 6pm. I got off work at 2pm, we made our way over to Gig Harbor to pick up the trailer by about 3pm. It was getting some minor repairs done after sitting on the RV storage lot for nearly a year. Of course, it was raining. We had to get everything hooked up to the Jeep in the rain, and make it down to the campsite. We got to the campsite and got everything level and hooked up(or so we thought), and by this time we had to leave for the rink..which was 30 min away. Our game went well even though we lost, and then we had the job of heading back to the trailer. Before we could do that however, we had to do some grocery shopping!

Yes, that is my 7yr old IN the shopping cart. It is simply easier to control him when you are trying to look for things in an unfamiliar store. And he enjoyed it. I don't care who stared at us. That was a busy night, and we had to get up at 5am the next morning for another game! In fact, that was pretty much our weekend. Did I mention that we had no water pressure for our hot water?? We spent the rest of the time trying to figure that out-and resorted to using the campsite showers. Oh well. Needless to say, we were simply exhausted by the time we drove home on Sunday. But, we had a GREAT time watching the boys play in the tournament!!

Monday it looked like things were returning to normal. Until 2pm when I got a phone call from Nicks' school. It was the school nurse telling me that Nick had bitten his cheek not once, but twice and it was bleeding pretty bad. They did not want to send him on the bus like that and requested that he be picked up. I said OK and was on my way. The whole time I was wondering WHY he had bitten himself in the first place? What happened? By the time I got to his classroom to pick him up he was sitting at his desk twirling a toy. I could tell that this was not good. No one could say for sure what had provoked him. His mouth was tore up on the inside and I could tell that he was clearly hurting.
I dropped him off at the house with daddy and went back to work. As I drove, the idea of homeschooling Nick went through my mind. Why don't his teachers seem to understand him? When it was time for Nicks' therapist to arrive, Nick took one look and immediately started crying. He laid on his bed from Monday afternoon until Tuesday afternoon! He was not feeling well on top of his mouth hurting. He was barely eating and drinking. It was so bad that I took him to the doctor Wednesday evening. I wanted to make sure we were not missing anything with this illness or whatever it was. Since he was barely eating and drinking, I thought maybe his ears were getting infected, and with Nick, you really just never know. We can only tell how he feels by the way he acts. Laying down all day is not his normal thing. Nick is on the go from the time he gets up until the time he goes to bed. Turns out, everything they checked came back normal. At this point, I am not sure which is more frustrating right now. On one hand I am happy that everything comes back negative, on the other hand it really does not help in any way answering my questions as to why he is behaving so badly. They tell me to take him home and let it run its' course. What they don't realize is this thing has been running its' course for nearly a month and we are at breaking point....but I digress.
As if on cue, Nick turned on the charm at the doctor office. He was not the out of control lethargic child I was describing to them. He was smiling and laughing. Lord-are you listening...this was not funny. I am sure you were getting a good ole chuckle at my expense. Thursday was a little better, and by Friday...Nick was back in school. This was Nick today....

Bouncing on his ball and twirling his sock. He was happy, chatty, and cute. The Nick we all know and love. We are glad he is back, we missed him!

How I Sometimes HATE Autism......

2011-03-12T09:05:00.001-08:00

The reason for no blog posts has been rather simple. We were in the middle of a monstrocity. It seemed to come out of nowhere. One day Nick was doing great! Actually the whole months of Jan-Feb were pretty awesome. Nick was getting high scores in therapy and mastering programs left and right. We were taken completely off guard. Around the first of March is when hell broke loose.

We all went to Michael's skating practice on a Wednesday evening. Nick usually enjoys this. It ended in a total meltdown. I mean screaming, hitting, head butting...you name it. Nick came unglued. So much so that I had to spend the rest of time in the car with him. That was out of character for Nick. I wish I could say that it was all over after that and no other meltdowns; but that was just the beginning. Thursday-Friday we saw him get violent even towards his tutors. How can a normally sweet and gentle child just turn like this?! We were trying to come up with explanations....a kid in his class does this and Nick is imitating, his medicine is not working and needs to be increased, he is tired and getting too frustrated, etc. We went to go skating one evening last week. It started in the car-Nick was hitting poor Michael for no reason, kicking the back of the seat, screaming, hitting Mike even. What the HELL was happening to our little boy???!!! We had not even left our street yet before Mike told me to turn around and go back. Mike and Nick got out of the car and Mike told me to take Michael and just drive away for a little while. He wanted the shock value of us driving away without them. It worked. We came back and about 45 min later we were at the skating rink enjoying ourselves. The next day we increased his risperidone by half a pill. We had been down this meltdown road before, and were not going to deal with that. He was hurting himself now by this point. Clawing at his face, banging his head, and digging his toes into his feet. He was violent towards us and his tutors-poor Stephanie often had to take cover during their sessions; which were getting cut short. His great scores during Jan-Feb took a serious nose dive.

Tuesday he added a new one to his repertoir. Spitting. Stephanie came out of the room and said that Nick had been spitting on himself. Well, there is a kid in his class who I have seen spit on the teacher and aides in the class. Great. Nick is picking up other autistic kids' behaviors. As if we need that. That evening as I went to put him to bed I noticed that he sounded a little stuffy. He also felt a little warm. Are you kidding me Autism??!!! You mean to tell me we went through all this HELL for a friggin' cold??!! That my kid now has two bruises on his forhead and scrapes on his feet, that my oldest has been hit repeatedly by his brother more times in the last week than I care to remember, that his tutors have been smacked and had toys hurled at them, and that we have two new dents in our bathroom wall for a F'ING COLD??!!

We gave him cold medicine and have kept him home since Wed. I am glad to say that so far, his meltdowns over the past couple weeks have diminished the last couple of days. Today, instead of coming up and hitting me, he has chatted with me. I HATE autism for making Nick go through that hell. That is not something a kid should have to go through for a damn cold.

A Simple Sandwich...

2011-02-21T12:55:00.000-08:00

A peanut butter and jelly sandwich. A rite of passage of childhood. Something so simple, that under most circumstances would not be worthy of its' own blog post. But WE know different, don't we??

It only took seven years. Two slices of bread. Some peanut butter. Some grape jelly. One daddy to cut it into particular bite size squares that could be managed with a fork. And Voila....

February.......

2011-02-19T18:56:00.000-08:00

February has been the best! First off, Nick has been having some really good WEEKS of therapy!! That's right, I said WEEKS. Not days, but WEEKS! He is getting high scores on all his programs and there have been days where he gets everything done and has time to go to the park! My little rockstar!

Second-we celebrated his SEVENTH birthday! It was an all weekend affair. It started off on Saturday afternoon when we went to the ice rink. Nick had not been ice skating since his surgery in January due to swelling. He was very happy about this and let everyone in the rink know it. He was the loudest kid on the ice. After ice skating we went out to grab something to eat before the ice show was to start. By this time it was pouring down rain, and we had to change Nick. But, the thought of dealing with all the screaming in a public bathroom while getting odd looks from people because I am changing a seven year old's diapers was not something I wanted to deal with. But it was also pouring down rain. Decisions. I decided to change Nick in the car. More comfortable for him; and it was his birthay so why chance ruining it?
After a fresh set of pants, we made our way inside for some pizza. That's right...PIZZA. Nick now eats, and rather enjoys, pizza. He ate two slices and drank his milk from a big cup. Ahhhh, a socially acceptable outing. He almost blended. After dinner we headed back to the rink to watch the show. The only drawback was Nick kept taking his shoes off. Oh well. Pick your battles. It was a losing one with the shoes-so we just waited until we were leaving to put them on. This was a good day. Nick was happy.
Sunday we celebrated his birthday. I baked a cake and wrapped some presents. This year he got trains and cars. We put his small train track together and he had a blast pushing his trains on it. Could it be??? That after FIVE years my son is PLAYING with toys the RIGHT way??! Even better....he unwrapped his OWN presents and ATE his cake!! It was the BEST I tell you! I will take all the good days I can...it makes those tough days easier to handle.

Goodnight Mommy

2011-01-31T22:22:00.000-08:00

Nick has had some pretty bad afternoons lately. Not really sure what was or is causing it, but he just comes unhinged. There is only so much screaming, throwing, and slamming one person can take. I have been trying something new recently just to get through to him my dislike of his behavior....I have been making him do some vaccuum time. He screams and throws something on the floor, I tell him "Ok, let's get the vacuum" and hold his hand while I vacuum. At this point, I was fresh out of ideas and decided to go for the shock value. We had started to see some improvement, but he was still "acting up" quite a bit. (If it was still quite a bit AFTER the vacuum, imagine what it was BEFORE..) So yesterday, I yelled at him. I told him that behavior was not acceptable and I was not going to tolerate it. He is not to slam doors, throw things, or just scream. He was in the middle of a complete meltdown by this point because I would not just leave him alone...so he was also hitting by this point in the midst of screaming. Well, I yelled at him even more sternly and told him hitting was NOT acceptable either.

A few minutes later he was done. There was no more crying, no more screaming, just me talking to him. He was looking right at me with an apologetic look. Without prompting, he stepped forward and put his cheek next to mine. We hugged. For a long time. No words were necessary. He was sorry. I was sorry. I told him I loved him and that he is a good boy. We got through the rest of the evening without incident. As I was tucking him in bed, he looked at me, and said without prompt "Goodnight Mommy". Those two words have never meant so much. For all the mothers out there wondering if their child knows who they are, they KNOW. Don't think for one second otherwise.

The Week in Pictures

2011-01-23T18:04:00.000-08:00

This was one busy week. It started on Sunday with something that was totally fun.

Michael's hockey team got to scrimmage at the ShoWare center in Kent during the Thunderbirds game. I admit, we were feeling a little bit of trepidation as it is a big arena with lots of new sounds/smells for Nick. Not to mention the crowds. We were wondering what we could have gotten ourselves into as we drove to the arena. Parents of autistic kids everywhere know there are two options for this: A) He will love it B) He will scream bloody murder and it will be another event in which one of us will spend in the car with the boy. It turned out that he ended up loving the two zambonis they had. He tolerated the noise. There were a couple of close calls where he latched on to my jacket and buried his head when our team scored and the bull horn sounded; but it was a relatively scream free event and he even SMILED! Not at the camera of course.

That was the only fun thing that happened this week. I had Monday off due to the holiday, which was nice. It was relaxing in order to prepare for this:

On Tuesday Nick and I spent three hours in the hospital getting the necessary paperwork and procedures accomplished for his surgery on Wed. I think we spent more time waiting then actually doing anything. We talked with the Dr and went over everything we needed to do on Wed. Nick was quiet with no major meltdowns. Once that was over, I had to rush Nick back home and get to a meeting at work. I called that afternoon and got our show time to the hospital the next morning. We had to be there by 6:30 AM! Yikes that is early! Michael got to come with us, since he really could not stay home by himself. Since he only had a half day of school on Wed I did not feel that bad.

This was my little man sitting in the O.R. waiting room at 7am. I tried to prepare him as much as I could the night before, but not really sure of what would happen other than "Tomorrow we will have your owie fixed", it was really kind of difficult to be very specific. I explained it to him as best I could, and he was rather good.
His owie BTW was an inguinal hernia. Not exactly sure how he got it, but it was getting bigger and bigger so we thought it was best to have it fixed. Surgery was two hours long, and we spent about another hour in the recovery room. They gave him some sort of spinal block to help with pain after the surgery, only problem was, it rendered him virtually unable to walk. The poor kiddo came out of anasthesia unable to use his legs. He was MAD! I held him in my lap (yep, my BABY LET ME HOLD HIM!) and did my best to comfort him. He was super cuddly and I was enjoying every minute of holding him on my lap like I did when he was a baby. Michael was the best big brother a kid could ask for. He was feeling very bad for Nick and was very concerned about him. When we got home Nick still could not walk, so we each took turns holding him up as he moved his legs where he wanted to go. The kid was not about to sit in one place very long! His recovery has been slow but steady. It took him until the next morning to pee, and he is still pretty swollen. He began to walk again Wed evening, and has been getting pain meds off and on when he seems to be hurting. He has been very testy and short fused/stimmy the last few days. I am sure that is a result from everything that has gone on this week. I am hoping next week will be better and he will be closer to his old self. Really missing the old cheery Nicholas.

HAPPPPIIIIEEEE TALKIN'

2011-01-11T19:42:00.000-08:00

I was getting Nick ready for bed last night and we started to play around. He was being super cute so it was pretty hard to resist. Anyway, he got to doing one of his vocal stims (basically it sounded like he was barking like a dog..LOL) and I started to copy him. We both started laughing and Nick was adding more and more sounds to his repertoir. Of which I was not so talented in repeating. Suddenly Nick burst out laughing, spoke some jibberish, and then shouted "HAPPIIIEEE TALKIN!" Yes, Nick, we were Happy Talking together :)

Back to Normal

2011-01-09T09:40:00.001-08:00

The last week or so of Christmas break was rough. For us and for Nick. He was completely off his schedule and was a total wreck. Nick used to not be affected by a schedule change so much when he was first diagnosed. Now, if there is a schedule change he gets very anxious/nervous and is prone to meltdowns. Which is what Christmas break does to him. Even though his tutors continued to work with him-they were off schedule as well. We DID get to do some fun things in the first week, but with the overstimulation of Christmas day, the next week of break was just a horrible mess of meltdowns. I was very close to calling his doctor to increase his medication as I thought it's effectiveness had worn off and I was not willing to go through months of madness.

On Monday it was time for everyone to go back to school. I don't think anyone appreciated this more than us and Nick! After a couple of days Nick was back to being his normal cheeky self. Instead of screaming at his therapists he was using words. Toys were not being hurled in their direction(which I am sure they appreciated!) My picture frames are also getting a much needed break. They barely survived the holiday and have the scars to prove it. All week Nick has been a total rock star in his sessions! Boy am I glad for that. Things were getting downright hairy here for a while. Nick got several stern talking to's, and spent quite a bit of time in his room going "goodnight", a few objects were thrown, and two more picture frames were broken. All in the name of a Holiday Break. The crowning moment this last week was when Nick came and sat down next to daddy and watched TV with him. It was just a moment in time, but a moment that was very treasured.

Merry Christmas!!!

2010-12-23T18:07:00.001-08:00

Somedays you just need to play a little 'hookie'! The boys have been out of school since last Friday, but Nick has had therapy for the last few days. It is a juggle that I still find myself torn between. He can always use therapy, and he has made a lot of progess with it being 5 days a week now. So, during breaks such as this from school, I am always eager to sign him up for more hours to fill in the void. It helps control his anxiety during the break because we still have a schedule. But, somedays he just needs to be a kid. Today was one of those days. He had been going through 'zamboni withdrawals' for the last few weeks.With his busy therapy schedule, he is not able to come to hockey practice during the week to see the zamboni clean the ice. Today I called his afternoon therapist and told her we would like to take a day off. Nick needed a day just to be a kid. And it was hard to turn him down since our 'conversation' this morning revolved around the zamboni...
We went skating today around 2pm and both kiddos now fly across the ice. We all had a great time. Nick had a huge smile on his face. It was so worth the funk he is in right now for that hour! Yes, we are dealing with the fallout from all the upheaval today. Anytime we change his schedule, no matter how small, he gets a little funky. He is in his room now hanging out and calming himself down. It will be a low key night. We are getting ready to eat dinner, then it is bath time, and then bed time for Nick. After he is in bed, I am going to bake some holiday cookies with Michael. Nick does not get much out of baking yet, so it will be just me and Michael. Gives us something to do together. Tomorrow our big plans are to go see the holiday lights at the park and wait for Santa. Maybe watch some more holiday movies, and of course wait for the fire engines to come through the neighborhood and pass out candy. Hope everyone has a Merry Christmas!

The Great Flood.....

2010-12-13T20:39:00.000-08:00

And no, I am not talking about the current weather situation here in the NW. Let me explain what happened on Saturday.

*I get up at 7am. See Michael on the computer. I ask Michael if Nick is up yet. He says no.

* Nick gets up as soon as he hears my voice and wanders into the dining room. I change him, give him milk, and make his regular breakfast of two waffles. He eats.

* Hubby gets up and tells me I can go back to sleep if I want...cause he's got this. I lie in the living room and fall asleep. Big mistake. Through my slumber I vaguely remember Nick coming to me for various things. I tell him "go ask Daddy". I fall back asleep. Mike is on the computer. It has been a quiet morning.

* I wake up. It is too quiet. I go on a search for Nicholas and find him in his room. He tells me "goodnight". I leave. Mike goes in a few minutes later. Nick is somewhere else now. We look for him in our room. No Nick...but Mike yells for me to come there immediately. I am fearing the worst at this point.

* Nick had been in our bathroom. Obviously this happened some time ago--judging from the amount of water that was pouring out of the sink and on to the floor. Everything was soaked! Including the carpet in our hallway! We used every single towel we had available, mopped up the water, and soaked up the water in the hallway.....soak, wring, dry towels. Lather, rinse, repeat. All weekend long. No wonder Nick was hiding out in his brother's room!!

-It's OFFICIAL: BOTH of our kids have completely flooded the bathroom now. Whew! That monkey is now off my back.LOL!

A Look into Nick's World...and Ours...

2010-12-05T20:28:00.001-08:00

There is really no other way to describe exactly how Nick's autism is. You just have to see it for yourself. This is what happens daily in our house. Thanks to Risperidone, you won't see the OTHER side of Nick that was known to happen a few months ago. This is the more 'controllable' Nick...although I can use that term a little LOOSELY, because his behaviors are not really screaming 'controllable'. We have therapists at our house five-six days a week working with him. For three hours after school. Bascially, he goes to six hours of school-gets home at 3pm. At 3:30 he starts working with either Tracy, Scott, or Stephanie...depending on the day. He also gets Hippotherapy, Speech therapy, and Occupational therapy. This is the reality of his disability. People think he is a normal six year old because of his outward appearance. Then he starts to do some of his vocal stims in public. Or he runs away to slam doors, opens gas tanks on cars, hits things..etc. Then they assume it is just a "discipline problem" and that they know how to "fix" it. They stare. This is autism. Please, if you see a kid like this in a store or another place, be nice. Be understanding. Do NOT presume that the kid you see is "normal". This is a side of autism that is not shown on any talk show, and does not come with those success stories about 'recovery'.

Thanksgiving......

2010-11-28T19:00:00.000-08:00

Hope you all had a nice turkey day! We had a very relaxing one. My dad came up to visit for a few days and the boys loved it. Sunday it started snowing and that continued through Monday night. Monday I left to pick up my dad around noon and it was not that bad out. By the time we got back to the house around 2pm, it was snowing again and the wind had started blowing. I went back to work only to discover that everyone had been let go early-due to weather. That evening we had the earliest snow storm that I remember since moving here. The winds were blowing like crazy and the snow was coming down pretty fast. Of course I decided to take Dad and Michael out to get pizza right in the thick of things. Nick was still working with his tutors at that time, so Mike opted to stay home. On the way to pizza hut we saw numerous cars spin out, and were kind of laughing at their expense. One of them was trying to pull an empty trailer up the overpass....not a good idea. Anyway, we made it safely and ate our pizza in the comfort of our dining room. School was closed the rest of the week, so grandpa got to spend ample time hanging out with his little men.
Which also means that he got to experience life with Nick.

On Tuesday we were all set to go to hockey practice with Michael, but it turned out the rink was closed. We did not find out until we had driven to the rink-and Nick was not happy that we had to turn around. He cried because we did not go skating-then he cried as we pulled away from the house to go eat. We instead went to IHOP where we were pretty much the only customers there. Nothing like a plate full of pancakes to win over this brood..LOL!

Wednesday all the boys went shopping for some clothes for grandpa. He had only come with shorts and short sleeved shirts-and it was 32f outside. They also picked up a ham to cook for the big day.

Thursday we lounged around most of the day and watched movies. Holiday movies like Planes,Trains, and Automobiles, and Christmas Vacation. Nothing like a good comedy enjoyed by the entire family. Thursday afternoon we started the ham and three hours later we were enjoying some good food as well as good company.

Friday morning I got up to take Dad to the airport. The snow was all gone by this point and it was raining. It was back to normal. Nick had his chiropractor appt, but other than that, we had nothing planned. It was a pretty laid back week. Tomorrow starts the daily grind again.

School Closed!

2010-11-16T15:28:00.001-08:00

I was so looking forward to a day off with no children! Hubby and I were making plans to go and see a movie...ANY movie. Just one without kids. Well, that plan was shot to hell at 5am this morning when the school called and said "Due to numerous power outages around the area, there will be NO SCHOOL TODAY." Ok, Ok, so it was a little windy out last night and our power did go out for a bit. But seriously?? I find it humorous that *I* am expected to make it to work after last night, but teachers can't?? I have not seen anywhere any reports on my two lovely boys' schools being damaged, and our power was back on before 5am. I am willing to bet their schools fared just fine and they could have gone. Instead, I got to deal with two boys getting on each others' nerves ALL DAY LONG, and taking Little Mister to the grocery store with me...which was jam packed I might add. Ugh! That was another thing I had not planned on doing...see where this day went?? Is this a sign of the next three months to come?? I am going to need a bigger tub of ice cream.

Days are Short, and Nights are Long....

2010-11-14T18:46:00.000-08:00

Well, after my last post things got pretty hectic and busy at work. We were basically putting in 18-19 hour days-with little rest in between. We also worked 10 days straight. I missed so much during those 10 days...hockey practices, skating practices, chiropractor visits, and tutor sessions. I also missed a hockey game and just the general goings on around here. Let me see if I can catch you all up. Thursday everyone was off school and work for Veterans Day. It was soooo nice not to have to get up and rush everywhere. We all just kind of lounged around the house until it was time for Nick's therapist to come by. Mike took Michael to hockey practice at 6pm while I stayed home to cook dinner, and wait for Nick to be done with therapy.

Friday morning it was back to school for Michael and we had to be at hippotherapy at 10 am...which meant I had to leave at nine.

I still think this is one of the best therapies we have done. It is so cool to just watch him ride the horse. He does not stim the entire time, and absolutely loves it! That afternoon we also had his chiropractor visit, and I noticed that Nick sat completely still the entire adjustment. That is something he has never done...even the Dr was wowed. Friday night we did much of the same-relaxed around the house. Saturday we had another visit from Nick's therapist. She stayed for three hours and worked with Nick. I admit, it is sometimes nice to have them here. They can keep him entertained and engaged which gives me time to clean the house a bit. After that, it was time to head out to Michael's hockey game. The Spitfires WON! 3-1. It would have been 4-1 if they had counted the goal Michael made in the first three minutes!! Grrrr! Today we were all completely lazy all day...and it was grand! With that, I leave you all (esp. family back east) with a photo timeline of just how soon the sun sets here now. This is not even what it will be come late December. Then it will be even earlier.

3:15pm

4:30pm

4:45pm

5pm

The view by 5:15pm.

And on the flip side we have summers...where the sun does not set until after 9pm and greets us around 4am!

Dr. Appointment...

2010-11-03T22:45:00.000-07:00

Well they say it is either a hernia or hydrocele. More likely a hernia. We have an ultrasound scheduled for the 15th, then a surgery consultation after that. Poor kiddo. He was most excellent today for the doc too!!

Weekend Wrap up...

2010-11-01T16:58:00.000-07:00

What a fun weekend we had!! Saturday evening we got the boys dressed up in their costumes and went to the Halloween festivities at the ice rink. Nick was a clown and Michael was like an evil Jester. I had bought some makeup because Nick will not wear a mask, but was kind of nervous of how it would all go down. I imagined something out of the Exorcist. Turned out Nick only moderately detested the makeup-but instead of a clown, he ended up more or less looking like the smeared face of The Joker in the movie "The Dark Knight". Oh. Well. With Nick you just gotta pick your meltdowns. I mean the kid touches his face every minute of the day WITHOUT makeup-with the stuff is even worse.

Put skates on both of them and we got in a few laps before we heard the announcement'Will everyone who is entering the costume contest please come to the center of the rink'. Michael was a given-of course he will enter the contest. With Nick I debated with myself. I don't know why I still do this. He is a KID afterall! You might be thinking why would I even debate such a thing. Well Nick's autism prevents him from eating most of the candy, he gets very antsy around crowds, does not like to wait, and he cannot communicate a whole lot. My mind gets to thinking things like "Will he even enjoy this? Will he realize what is going on? Will he scream because it is taking too long?" Thank goodness I don't always think so 'logically' and end up throwing caution to the wind and saying 'Why Not?' This time I did just that. So, Nick and I stood in center ice with all of the other hopeful contestants. There was Michael the Jester, Iron Man, Spiderman, Dracula, 50's girl, cheerleader, a zombie, a rapper, and Nick the clown. Michael won the first award: "Scariest kid costume". A few other awards were given out "Most Original", "Best Adult Costume", etc. Then came "The award for Best Overall Costume goes to....The Clown"! I was shocked! I kept telling Nick "You WON Nick!" "You WON!" as we skated to pick up his prize. Mike informed me that as soon as the staff saw Nick they wanted to make sure he got something. That is what we love about the rink. They accept Nick completely. All his figure skaters congratulated him and told him how cute he was. They simply accept him. I don't know how much of all this gets in his head, but I hope some makes it in. So I give up on all the "What If's" and now say "Why Not??". Just go for it.

Last night was Halloween, and once again we were proven wrong by Nick. Michael had plans to go out with one of his friends-so it was just Nick, Mike, and Me. Going by previous years Nick would maybe make it down the block and back. Not this year! We dressed him up, gave him his treat bag (which he held the ENTIRE time on his own!) and headed out. Nick was into this. Although he needed some prompting to say "Trick or Treat" and held back from going INTO the houses, he did great! By the end of the night, he would run up to any house with the lights on and an open door...LOL!

In other news, I had to make an appointment for Nick today to get his testicles looked at. They had noticed years ago when he was dx'ed with autism that one of his testicles was larger than the other. This weekend however, it seemed very large. I know it may be nothing and it just might be an anomaly he was born with, but I know I will feel better getting it checked out. Michael had a hernia when he was little that presented itself in the same fashion. It was a simple repair, but still. I have a feeling it is a hernia though. I hope to be proven wrong on Wednesday.

Pictures from Hippotherapy

2010-10-30T15:05:00.000-07:00

The Season of Change....

2010-10-21T17:41:00.000-07:00

It has been a busy month in our neck of the woods. Hockey has started in full swing...so we are at the rink Tues, Wed, Thurs, Sat, and Sunday! We have also found Nick a new tutor who will be coming on Monday evenings, and Nick has hippotherapy and his chiropractor visits on Fridays. One of Nick's other tutors is also back to help us out and that schedule varies. Last weekend she came for about three hours each day, and she has come three days this week. It is nice to have the extra help..not going to lie. While Nick is being worked with I can actually get some stuff done around the house.

Last Friday was a big break through-Nick suddenly started hopping on one foot; albeit he was holding on to the gate, but he was still hopping! And he was even changing feet! I can't help but think that the sessions with the horse have helped in that area; along with possibly all the skating.

Nick's new tutor is a perfect match for him. We were interviewing him on Monday night with his BCBA and he was just so excited to hear what all Nick was doing! Big plus for ME is that he looks like Jake Gylenhaal...oh yes he does. I can handle that coming to my house every Monday for like three hours working with one of the coolest boys on the planet :) Just sayin'...

Michael brought home all A's and B's on his report card!! Love love love that boy of mine!! I also believe we have switched gears as far as girls are concerned. Ugh. Did not take them long to notice Michael. He came to us a few days ago asking how to tell if someone likes you. This has been heresay for a couple weeks now. Michael found out through the grapevine that this little girl likes him. And I think he also kinda likes her. We have just entered the whole next phase of this journey called Parenthood. How did this happen so fast?? I remember bringing that little 8 pound bundle home from the hospital like it was yesterday. Through years when he was not growing, not eating, and hearing for the first time he had GHD. We are six years out from hearing the final diagnosis, and we could not be prouder of him!

My NICK is BAAACK!!!

2010-09-27T21:22:00.000-07:00

Yes Nick, you were still here; but you had a cold and you always seem to regress a little bit during your illnesses, so your mommy and daddy missed your little quips about the zamboni and the microwave.Simply because they were not there. Speech is much more limited when you are sick. I sure was glad when you started them up again today in full force. Mommy promises to take you to see the zamboni tomorrow-I felt bad today because you only asked for it about 100 times in the hour I was home. Sorry baby boy, we had to go to the chiropractor. I am glad you're back Nick-we sure did miss you :)

The Sweetest Thing.....

2010-09-26T21:42:00.000-07:00

This amazing thing took place on Friday morning. Nick stayed home from school that day due to really because we did not know how he would take to this. It has made some kids dizzy, nauseous, etc. Plus, we were not sure how long it would take to get through everything such as paperwork, evals, etc. But, it was the most amazing therapy we have thought to try. And we saw results immediately. Even though this was a new experience for Nick, he was completely calm while riding. No stimming. At All. He was looking at people as they talked to him and doing what they asked. While riding the horse. It was beautiful to witness. He did it so naturally...not robotic. He was petting the horse, brushing him, telling him to go and stop, and before we left, he gave Yukon two big hugs and said Goodbye. The entire ride home he was calm and did not stim either. We are currently working with our insurance company and will provide them with progress reports to see if we can start getting this type of therapy covered. It was amazing. Enjoy the video. This type of therapy is called Hippotherapy. "Hippo" is the greek word for Horse. I will go more in depth later about its' uses for special needs kids and how it helps the vestibular system; but until then, just enjoy the video.

Nick...showing us all what we DON'T know about autism...

2010-09-17T18:18:00.001-07:00

Never. Give. Up. Nothing is 'impossible'. Nicks' doctors and therapists never thought he would even like this, much less get out there and DO IT. You have to remember that this is a kid who does not even like the microwave being turned on..to think he would remotely tolerate a noisy ice rink, with lots of giggly teenagers, and the loud music...let's just say the odds were not in his favor. But, in true Nick fashion, he is proving us all wrong.

What do you all think??

2010-09-05T11:09:00.000-07:00

The Ice Rink

The ice skating rink is perhaps one of the last places you would expect to see a disabled child. But if you look closely, you will see him. He is the little boy standing just outside the rink with his two parents. You might notice that one of the parents always has a hold of this little boy, never letting him go. You notice he does not talk much, and does some strange things with his hands. They have been coming here for a couple of months now. Their oldest son is learning to play ice hockey, and coming to the rink has become a family affair for them. They all show their support; even the little guy. The little one has been watching all the kids skating at the rink-joyfully jumping up and down each time one of the figure skaters would spin in front of him. He loves watching them. His two parents smile at each other and then at him-for them, this is enough for now. You find yourself staring at this family, not out of happiness, but rather out of dismay. I have noticed your stares. That little boy you are staring at is mine.

On this day however, I am not going to let that bother me. We have decided to put ice skates on that little disabled boy. We have decided to let him be a part of the action. We get to the rink and get skates on. Although my little man seems to want to skate, this mom admits to being just slightly nervous about how it could all go down. We head out to the ice and carefully step on. I grab on to my sons’ hand and begin to lead him around the rink. We are met with his figure skater friends who have been twirling in front of him for weeks now. They both tell him how good he is doing, and even though he does not look at them, I can tell he is beyond happy. Nobody knows it, but this mom has a tear in her eye at this moment. You see, this is nothing short of a miracle. That little boy who is now ice skating with his mom is autistic.

This is the article I am thinking of submitting to Autism Today. I would like to hear your thoughts!

Last weekend of summer....

2010-09-04T21:38:00.000-07:00

So, yesterday I had the day off from work and I thought I would run a few errands to prepare for school. The day was going just peachy until our 16yr old dog decided to leave a puddle as big as the Mississippi River in our hallway. I do believe some (ok, A LOT) of expletetives were used in the clean up process. Naturally these happened to be used in front of my now highly echolalic 6yr old...in which he promptly repeated to himself in his room. Shit! Now I have to deal with that too. Anyway, I get the boys dressed and ready to go. Mike is staying home to do the yard...as it resembles a jungle by now. I give Nick a brief run down of the day's events. First we will go to Michael's school, then we go to Nick's school, then we go to the store. Nick is fine with this, and things are going beautifully. Until...

We get to Michael's school. It is crowded with parents doing last minute things (like us) in a rush before the year starts. At his Open House last week we were told that he needed a Tdap shot before he could start school. No problem. I made the appointment, we went, and it turns out he didn't need it at all-so we got the paperwork from the nurse and I thought I would bring it to his school for his records. I am standing at the counter, restraining Nick with both hands to keep him from running away, and listening to the secretary tell me that Michael needed the Varicella vax and NOT the Tdap! WHAT??!! This would have been good to know like LAST WEEK! I mention something about good luck trying to get an appt. before school starts..and held my tongue. In my mind I am cursing up a storm, but outwardly I manage to be civil and even smile. Walk the boys back to the car, and head to Nick's school to get the list of school supplies. In the parking lot of the elementary school I call the appointment line on my cell phone and manage to get Michael one for the 13th of Sept. Oh well. That is the best I can do. Mike also calls me. He calls to tell me the weed eater blew up and that he would not be able to finish the yard. Ummm, I could care less about the yard right now sweety-my day has been de-railed, but I am guessing you are okay since you are calling me? By the way, Nick had decided to poop once we got in the car...so the backseat area was rather smelly, and I had to take smelly boy to the schools like that. I am pretty sure that by this point, I had that "Don't Fuck with Me" look on my face.

We get home to change smelly boy, eat a bit of lunch, and prepare for the major outing of our day. SCHOOL SHOPPING. I can honestly say that it was at risk for spiraling out of control. Michael did not like Nick even touching anything of his-so it was becoming quite the scream fest. I had enough. It is no use scolding Nick for screaming, so I grabbed a couple of notebooks with the 3D pictures on the front, and a happy child we had. We also had to buy new winter jackets, some more long sleeved shirts, and new shoes for both. During this time Nick managed to escape and was all the way at the front of the store before I could catch him. I noticed the stares as I was escorting him back to the family. I could care less. Let them fucking stare. My kid is smarter than yours...school supplies be damned!

Got home and divided up the supplies. They are all set, and we were worn out. Today was much better! We had our YMCA playgroup this afternoon, and got to talk with other special needs parents. What a joy! They held it in the gymnastics room and all the kids had a blast! Got some cool motion pictures of Nick and Michael. Enjoy!

Fixed it!!

2010-08-27T21:55:00.000-07:00

I finally fixed the blog! Now it is more appealing to look at...LOL!

A Meltdown vs. A Tantrum

2010-08-26T19:41:00.001-07:00

For anyone who has seen an autistic child have a meltdown, then you are aware of the drastic difference. For those that have not, I will do my best to describe what a meltdown can entail. Today, Nick had a meltdown of the likes we have not seen since starting him on Risperdal in April. One minute he was fine, the next minute he is screaming uncontrollably, laying on his bed, covering his face up with his blanket, shaking his head back and forth, biting his lips until they bleed, and his whole body seems to be so enraged that he shakes. At that point, my child is no longer 'there'. It is during these rages that he will bang his head or hit himself in the face. Before starting medication, these would happen almost daily. They would render Nick unable to function, and our whole focus at that time would be damage control. A toddler having a tantrum is normally due to them not getting what they want. A meltdown can occur from something as simple as lights being too bright, the microwave being turned on, or even the wind as it blows past his ears. Any of these situations can send Nick into a cataclismic state. It can also be caused by anxiety. Anxiety over a simple schedule change, if he has to wait a few minutes at the table for dinner, if he sees an oscillating fan, etc. Yes, these have happened in public. I can't reason with him and tell him to 'stop it, or else.' These are things that literally HURT him. You cannot begin to imagine how it is to watch your child endure something like this and feel so helpless.

What a weekend.......

2010-08-03T18:19:00.000-07:00

Yes, I know I am late for the weekend wrap up; but when you hear about our busy weekend-you'll understand why!

Saturday: Started off ok. Got up around 7am in order to get the kids ready for their swimming classes. We had our usual of waffles and cereal. The only hiccup in this process was that Mike did not go because he was not feeling up to it. Ok. I schlep the kids to the YMCA and we all stand in the hallway waiting for one of the three family dressing rooms to open up. In all actuality, there is only two that we can use-unless we want to endure torturous screaming. The third room is the bathroom-and we all know PUBLIC RESTROOM=TOTAL MELTDOWN. We finally get changed into swimsuits and make our way to the pools. I get Nick all situated with a life jacket, and we get into the little pool where Nick has his lessons. I don't see his regular swim teacher. Uh-oh. There was a sub on this day. Uh-oh. Nick wanted nothing to do with her. Everytime she came near us, he cried and looked the other way. After a couple of times of this, M, the older girl in his class(she has epilepsy) said matter-of-factly to the teacher: "You're making him cry! You need to stop doing that to him!" We all got a chuckle out of that. Fortunately, the teacher has an autie of her own, so she took no offense to him utterly ignoring her! After that it was time for Michael's swim lesson. Michael's are in the big lap pool. Me and Nick got changed back into our dry clothes and sat on the bench watching Michael. Nick was at this point, getting a little out of sorts, but nothing extreme...yet.
By the time we got home, Nick ran straight to his room to lay down. He was screaming and shaking his head; his behaviors were reminiscent of the months before we started Risperdal. Oh G*d, not this again!
Mike went into his room to see if there was anything he could do to soothe him. He came out and said "I think his tummy is hurting...he keeps putting his hands down there and holding it. I think you should go in and be with him." I went in, kneeled by his bed and asked "What do you want Nick?" He sat up and replied "I want squeezes". At this point, I am thinking he is still upset about the sub teacher. After a squeeze, he laid down again and was still upset. I asked him if he wanted more squeezes-and he sat up and said "More squeeze". I squeezed him again; he laid down and said "goodnight". A few minutes pass, and he then comes out and lays on the floor. Still trying to figure out what is going on with him when we notice the wretched smell coming from his diaper. Nick had the mother of all BM's and this was smelly even by his standards! It was a ripe and heavy load. We got him cleaned up and were on our way to playgroup. He was feeling much better, and back to his normal self. WHew! Playgroup today took place in the gymnastics room. Safe to say that both Nick AND Michael enjoyed this!! They were jumping on the trampoline(which happened to be part of the floor...very neat!), Michael was swinging into the foam pit, Nick was swinging on the bars, and they both just had a grand ole time! Afterwards Nick had another ripe BM, but this one not as bad as the first. We went to skate, and that was pretty much it for Saturday. Saturday night Mike found Michael sitting in his room watching "Temple Grandin" on HBO! HUH??

Sunday: I am getting a shower when Michael asks through the door, "Mom? When did Nick start talking?" "Ummm, around four I guess." "Hmmmm, just like Temple Grandin!" he answered back. He still uses quite a bit of his own jargon, but little conversations are emerging. On this night, he told his brother "Goodnight, I love you." I know this because I suddenly heard Michael say "I love you too Nick!" Michael has been waiting for nearly 6yrs to hear his brother say "I love you". It was enough to make you cry tears of joy. I decide to try and take Nick off of his melatonin. The PC3X has a calming effect(YAY), and the Risperdal also makes him a little drowsy. I figured it would be worth a shot to try and decrease what we could. So, for the past two nights, we have been free of melatonin. Cross your fingers that we can continue!

Yesterday we had his chiropractor visit. Before the doctor came in Nick was jumping up and down saying "want doctor, want doctor" WHAT??!! I explained that we would have to wait and that the doctor is not ready yet. When Dr A. came in, Nick was giddy with laughter and played peek-a-boo with him! I told him of his rather smelly BM on Saturday, and he just said "GOOD! That means it is working! It is cleaning him out, just what we want it to do." Even the small things are being noticed...for example, Mike now says that he can now tell when Nick is doing a BM-he gets that 'look'...which leads us to think HE might now realize when he has to go as well. One day at a time.

Community.....

2010-07-25T18:58:00.000-07:00

It has been another busy week here in our house. The summer activities are in full swing, and we are doing something at least 6 days a week. There is so much going on really that I do not know where to start. I guess we will start with some medical stuff. Nick's chiropractor has ordered one of the biomedical treatments that has been beneficial to kids with autism; that should be in on Tuesday. It will cost us $110 for a three month supply, but if it helps him then it will be well worth it. If it doesn't, then we can at least say we tried. It was brought up by one of the other chiropractors in his office one time when Mike took him in, so we wanted to ask Dr. A (his chiro.) about it. He said no problem and that he would go ahead and order it.

We are also in the process of finding a new tutor for Nick. Tracy still comes twice a week, and we are trying to find someone to pick up another two days.

Today Nick thought it would be fun to wake up around 6am. Not only was he awake at 6am, but he was roaring to go. Much to my dismay, and to Mikes'. I managed to get him to wait in his room for another hour or so. But after that it was futile. I kept hearing this little voice beside my head going "I want meeeeeelk. I want meeeelk."
One thing about Nick is that he knows what he wants and he won't let up until he gets it. He is also becoming more and more verbal. Which is a double edged sword. It seems that while his word usage is going up, his loud; unintelligible vocal stims increase at fever pitch. Although, I do notice this more when we are out and about rather than at home. I guess I will take what I can get.

So, I must say, that although we are busy beyond belief with all the activities going on; very positive things have happened. Nick is getting out in the community-and the community is getting to know Nick. The staff at the YMCA have fallen in love with him. They always say Hi to him and ask how he is doing today. He smiles big when he is in the pool and he sees his swim teacher. He knows he is about to have some fun and loves the water. There are other special needs kids in that class, and it is wonderful. Both of the boys have benefited from our YMCA membership, and we are there two-three times a week. He also has a playgroup every Saturday afternoon, which from the above picture, gives everyone a workout. He runs for every door he can get to, often followed by one or two staff members or us. It is quite comical.
Since we have been going to the skating rink, people have started to talk TO Nick as well. It is also nice to have people walk by and say "He having a good day today? He is doing so much better now!" We have met Eddie-the zamboni driver, and the figure skaters who spin in front of Nick when they see him, the hockey coaches who have offered to take Nick out on the ice and the other wonderful people. I love the fact that they treat him like other 6yr olds and talk to him. I like to think that even though he may be jumping and flapping, he understands what they are saying to him. I also like to think that one day, he will start talking back to them.

Weekend Wrap up...

2010-07-18T14:46:00.000-07:00

I know, I know, it is a little early for a weekend wrap up, but figured since I had some down time I might as well. Friday started off rather slow. I thought it would be an easy day, with no appointments until 4:30pm. Apparently I was wrong. We got a call around 3pm from another tutor. She had scheduled a meeting/interview with Mike while I was gone, and today was the day. It was scheduled for 3:30pm, and we had to leave for Nick's chiropractor around 4pm. Ok. Not.So.Bad. She did not make it here until nearly 4pm. I met her in the driveway on the way to the chiro. Nick was not happy about this derailment of plans, and cried and covered his face to show his displeasure. We talked to her for a little bit, and she gave us a resume to look at. I then jetted off to the chiropractor, missing our 4:30 time by about 10 minutes. I hate being late. We were still allowed to see the chiro. and Nick got some adjustments. When we got home, Mike and I held a "family meeting" on the back porch to discuss the tutor situation. Mike thought she might be over qualified and more set in her ways since she is a little older and more educated than his others. If there is one thing we have learned, it is that with Nick it is better to be more flexible in ones' thinking. His current tutors have generally followed our lead with what works for Nick-and he was concerned that an older, more educated(not saying that education is wrong) adult might be a little more 'set' than the younger types. We came to the decision to try it out, and see how she works with Nick. It took him about a month to come around to the other tutors, and I did not want to base an assumption on a simple 5-10 minute meeting. We really had no time to actually talk to her in depth about Nick. Now the problem was trying to schedule everything.

Saturday started off at 9am with swimming lessons for both kiddos. Actually, Nicks' was more or less just playing in the water with other special needs kiddos-but I do think there might be some actual learning going on. If not, who the hell cares, it gives us a chance to be social and not have anyone judge or laugh at my little man. All the kids in that class are just adorable anyway. Then, at 10am it was time for Michael's swim lesson. That went on until 11am-at which point we came back home, ate some lunch and then it was time to head to playgroup. This was comedy hour. Two YMCA staff members not well versed in autism in a big gym with two autistic kids. Sit back and marvel at the mayhem. Nick alone gives in-experienced adults a run for their money...imagine times two! There are also 4 sets of doors in said gymnasium-and for those that know Nick; that is enough said. The whole hour was spent with Nick flying by us laughing, and an exhausted staff member chasing behind him. By the time 6 weeks is up, they should be Olympic class sprinters. It is very entertaining to think people in their 20's are having a very hard time catching a six year old. People tell us "don't worry, we can catch him" and to them we say "Okay, GO!" Then is when they say "Man he is FAST!" Yup. We know.

Saturday and Sunday evenings are hockey practice. Not much went on then other than hockey. Which, we have to start getting ready for now, so I have to cut this short. More pictures to follow later.

Home Sweet Home....

2010-07-16T13:14:00.000-07:00

I am posting this from HOME!! I got home around 1:30pm yesterday afternoon and have been going non-stop. I have a little time now to get on here and post before I have to pick up hubby and Michael at the movies. They went to see "The Last Airbender", and I am just hanging out at home with Nick. I dived right back into Nick World yesterday. By the time we got home one of Nick's tutors was here and we all went on a scheduled play date with another little boy with autism (and his tutor). His mother came also, and while the kids 'played' with their tutors, us grown ups got a chance to talk some. After all that, it was almost time to take Michael to his dance lessons at the YMCA. Dance was finished at 7:15pm. Then it was time to pick up some dinner, give each boy their meds, give them baths, and settle down to bed. This morning I was up at 8am. Nick told me he wanted some milk,and a few minutes later he said he wanted waffles. Michael was already up playing a new computer game, and said he was not hungry. Today we went and renewed the Jeep registration, then I dropped hubby and Michael off at the movies. Tonight I am being told is skating night, so we will be at the ice rink. Will try to see if I can post some pictures later. That's all for now.

Almost Home

2010-07-09T18:12:00.001-07:00

I have just a few more days left here in Colorado. School has been challenging at times, but have gotten through it. I talk to the boys almost daily....I cringe to see our phone bill when I get home LOL. Nick and Michael have been having a good time with daddy, and they sound like they have been keeping themselves busy with activities; which of course, I will be diving right into when I get home. Guess I am going to try to enjoy my last quiet weekend ;)

Nick has gotten used to the zamboni now and no longer screams when it comes out to clean the ice-he just likes to make sure that it does not leave the rink and come after him :) Constant exposure sometimes helps with those things, but has not worked for the vacuum or microwave...go figure. Nick even will talk to me on the phone. Although his conversations revolve around making sure we are not going to vacuum or use the microwave :) LOL. Just gotta love him.

Michael is helping daddy out with the house cleaning and yard work. Both of them are now enrolled in swim lessons. Michael has also started a hip-hop class and he told me yesterday his teacher told him he was his favorite student. He still loves his skating, and is getting to be pretty good at it. Next weekend will be my first weekend dealing with all the summer stuff...they have swim lessons starting at 9am! Oh well, I will be with all my boys again and be loving it.

Feel so 'out of it'

2010-06-27T19:05:00.000-07:00

That is one thing that I hate about being away from my boys. I feel so out of touch with them. I am now officially the parent of a junior high schooler, and a special needs first grader. Michael did get accepted into a prep school for his sixth year, so that is good. And since I have been away, their summer schedule has slowly filled up. Michael and Nick are both taking swim lessons at the YMCA. Although Nick will be in a special ed class. Michael is also taking dance and tae-kwon-do. Add that to the weekends when he is at the skating rink. By the way, he has learned to skate backwards and scored his very first goal in ice-hockey practice. He was so proud of himself-so I hear. Nick is quite the ladies man it turns out. He gets all kinds of girls to spin and twirl in front of him(laughing uncontrollably at them as they do so), and gets them to give him their little smushy/sticky wall climbers. He can do all this without saying a word....just merely laughing at them and having a good time (although, daddy does help to point them in the right direction of said blonde boy laughing).

I just feel so out of the whole autism world. In some ways it is a nice break, but in others it just feels blah. It is like almost like a big void in my life right now. Autism is such a huge chunk of my life, that I almost feel 'naked' without it. Imagine my surprise when a classmate of mine here asked for some pointers on dealing with an autistic boy that her hubby was providing daycare for! Yes! I am in my world again! I started rattling off all kinds of things about Nick and some of the ways we have helped him, and some of the ways that others have helped. I let her know about tactile stimulation(as in how stickers help Nick calm down by just feeling the stickiness over and over), how sensitive his senses are, and how he needs to be warned when something different is about to happen or something loud. I don't know how much it helped her hubby, but I know she seemed to think it made sense.

Anyway, going to go for now. Probably will not post again until I am back home on the 15th.

Update....

2010-06-06T21:54:00.000-07:00

I am out of town until the 15th of July, so there may not be any blog posts until then. I will however still be on facebook if you want to keep up. Hubby and the boys are back home, so I don't have much daily contact other than a telephone call a few minutes a day. What I can tell you is that hubby took Nick to his Chiropractor last Friday and he said some things were brought up by the Doctor. One of them being a heavy metals test and possible spray to chelate them from his system. Not sure what we will decide on that yet, but it is a possibility. Michael had hockey practice today and other than that, no big news. Not sure how many posts I will do while I am away, but just so you all know, we are still here. Still getting through whatever comes our way.

Weekend Wrap up...

2010-05-23T21:19:00.000-07:00

We had a very busy weekend but very fun as well. Saturday we woke up and had our normal breakfast (two waffles for Nick, cereal for Michael). The boys and I went to the BX so that I could pick up some last minute items for my uniforms, and I picked up uniforms from the alterations shop. We then came home and ate lunch. After that, we headed down to Charlies' Safari to meet up with a friend of mine and her boys. Mike came along for this one. He was curious as to what the place was, and recognised that I would need help with Nick. I was glad that he came along! I mean, I normally AM glad that he comes along with us, but this time I could not have done without him. We get to Charlies and Nick cannot stand all the noise. We figured this might happen. Mike volunteers to go outside with Nick so I could stay and talk as well as watch Michael.

After sitting and talking for a bit, I thought it would be nice to get some sodas, but my wallet was in the car-and Mike had the keys.I called him on my friends cell phone and he told me they were in one of the stores next to Charlies. We met up outside and he wanted to show me what they found in the furniture store.

Nick fell in love with this chair! It spun around and around. He stayed on this thing for at least 10 minutes. We then toured the whole furniture store with Nick 'testing' all the furniture. He could really get a job doing that-he put that stuff through its' paces. After the fun furniture store, I then went back to Charlies to get our drinks and resume talking with my friend. About 20 minutes later, Mike comes back in with Nick. But this is different...Nick is not screaming. We try once again to get him to go on the inflatable jump castles. Low and behold he DID! Turned out that my friends' youngest boy was a great peer model for Nick! This is what we saw the rest of our visit:

Thanks B. for being such a wonderful friend to Nick!
We ended up going out to eat afterwards and just had a really awesome Saturday! Nick ate Pasta Marinara at Ruby Tuesday's, and mommy enjoyed a chocolate shake. We left there stuffed to the gills!
And today....

We signed the big boy up for Hockey. He has ice skating lessons starting in June-and then; ice hockey. Good thing we have awesome health insurance...

Our Newest Project...

2010-05-16T22:41:00.000-07:00

This is what we have been working on for the last couple of weeks. It took a while to figure out the program and exactly what we could do with it. My computer kept freezing up everytime we would come close to finishing it, which was very frustrating. However, now that we have the trial version complete, we wanted to see what others would think. Nick watched it tonight after it was complete, and he loved it. He was repeating quite a few of the words. He knows most of the items already, but now we have added the words to what he likes as well as my voice saying the letters and words. Things like Sesame Street or even some of the other videos we have for autie kids were just too confusing for him. Nick does not get much out of characters, and even simple story lines are lost on him. So, we made our own. And will continue to do so because he really did enjoy it. Let me know if you all like it...

Wordless Wednesday...

2010-05-05T19:43:00.001-07:00

Busy Weekend...

2010-05-02T21:54:00.001-07:00

First we had this....

Which means some of these came over....

They brought some of these...

Which led to a few of these...

Today we did a lot of this....

Which led to a little bit of this...

We then went and bought some more of these...

Then it was time for *ahem* this....

Finally, it was time for this...

And we think you are weird too...

My Boys...

2010-04-25T19:08:00.000-07:00

They are like my air. I need them in order to survive. They are a package deal. I cannot have one without the other. They are exactly how they were meant to be. No, things are not exactly 'perfect' in some people's eyes, but they are perfect to me. They are MY boys.

A Look....

2010-04-20T20:06:00.001-07:00

Today I called his name and he LOOKED at me, and waited for me to tell him to do something. Today, he was snorting like a pig--on purpose. Today, he went to daddy and said "goodnight" when I did not even tell him to do so. He was there. He told me he wanted applesauce-while he looked right at me.

Had another chiropractic appointment with Nick today. He is getting better. Said hi to the receptionist(with just verbal direction from me), said hi to Tutor on his own. Nick got a few more adjustments, in which he stayed completely still again following docs orders. In fact, Nick got onto the table on his very own. I asked the doctor what it is exactly he is doing. He told me he is removing/adjusting what Nick's body tells him to. Today he told me he removed some emotional thing that he said happened to Nick when he was three years old. He said he could even tell me the date if I wanted. I said No, but I was wondering what it was exactly. He said there is more to chiropractic care than just adjusting the spine. He is treating the entire central nervous system, and if need be, we can even go further in our treatments and start detoxing with the aide of his nutritionist on staff. He is pleased so far with the positive results he is getting. Maybe he is getting these from Nick during adjustments? I do know that we are seeing some results after his adjustments. Last Friday, his tutor graphed his Requesting at 80% during their session--the highest it has ever been. But, apparently school is still seeing the 'old' Nick-running off, slamming doors, etc. Which leads me to wonder-why the drastic difference in settings? Could it be that Nick knows the teachers are outnumbered and therefor he just goes for it?? Could it be that he suppresses his desires for such things while at home and lets loose at school?? Not exactly sure how to fix this problem. Maybe he is frustrated because he thinks they treat him like a baby?? How many years can one really stand going over the ABC's? When he was bored during therapy he would just stare out the window and his therapists were having trouble reaching him. We told them to challenge him with different things, and low and behold, they were shocked with what he knew! Maybe the same is now happening at school? Is he tired of the same old curriculum he has been getting since he was three?? One has to wonder.

Notes....

2010-04-16T21:14:00.001-07:00

I was asked to keep track of any changes in Nick since we started with the chiropractor; so here goes.

The first visit went well. Nick really enjoyed it and seemed very at ease with everything-despite being a little anxious at first. After we got home, Nick was very verbal and laughing and playing outside. Mike asked me what I did to him to make him like that. I said 'Nothing'. Suddenly, Nick passed some gas and headed back to his room stating 'I need a diaper'.

Yesterday, while working with his tutor, Nick's verbal requests were at an all time high. 80%. He has never been that high since starting the program last summer. His tutor showed me the graphs they have been charting of all of his undesirable behaviors. They have dropped. This was also since starting the Risperdal. His slamming doors/hitting/banging have gone down considerably. I have not seem him bang his head in two weeks. Meltdowns have decreased, and the ones he does have he is easily consoled and can get a hold of himself much quicker. Last night in the bath, not only did he play in the tub-be he did not want to get out. He did not scream-but he kept going back every chance he got to get in the water. This is a rather new development-and a welcome one.

Today was his second visit. He said "hi" to the receptionist with some prompts, but left out the "SAY" as in "SAY hi". He simply said "hi". We practiced exchanging some social chit chat, and his responses were the same. He left out the "SAY" in all of them. For someone whose speech is largely echolalic, this is a step in the right direction. He smiled at the doctor, and did not distribute much anxiety this time around. He sat still when the doctor told him to, and even gave the man a high five. Tonight as I was reading him a book; he did hit me. Whether he meant to or not, I stopped and said "What do you say?" and he said "sorry". Usually he would repeat "What do you say?" or "say sorry". But not this time! He answered right away with the correct response!

Have we finally found the right combination?? Nick is getting his personality back. There is no way to describe how this feels. Like we are on top of the world right now.

No School Today.......

2010-04-14T08:38:00.000-07:00

At least, not for Nick. They have a half day today which means that his schedule did a flip-flop. Literally. ON half days, someone had the bright idea to have the kindergartners flip their schedules around. For example: Nick is in the PM kindergarten class-which means his school starts at noon. On some half days he is actually off. However, on half days like today-he was supposed to be at school at 8am. Well, the school does not tell the transportation people this(Brillaint huh??) and it is confusing for all to say the least. Not to mention, it completely disrupts the whole morning routine we have established since the beginning of the school year. I swear, sometimes it seems the 'typical' people need to start using their brains.

Nick has another chiropractor appointment today though-so being out of school is actually convenient. We will find out what they saw on X-rays and develop a treatment plan. Not sure if they will do his first adjustment today or have us come back, but I am excited to be doing something. It might help, it might not. But we will try anyway. His appointment is at 4pm, and depending on what is going on tonight I might do another post to update what happened. I told Nick last night that there would be "no bus" today and that he would be going to the doctor. He started to get a little anxious and started whimpering. He then promptly told me "Goodnight Nick". :)

Update: Nick had his very first 'adjustment' today. Nothing big. Just more of a vibrating hammer type thing that was used on different parts of his head,neck,and spine. He seemed to really enjoy it. Nothing out of the normal as far as behavior wise so far. Although, I will be keeping track of his progress. We have another appointment on Friday, and the doc wants to see him at least twice a week. So, that will be another thing on top of everything else we are doing. I swear, will it never end? Of course I already know the answer to that question.

Why Such a Stigma??

2010-04-11T18:35:00.000-07:00

As if this life with autism was not enough, it seems that there is a huge stigma (ok, not SEEMS, there is) added to moms that have to use medications. We are looked down upon, criticized for our decisions(did not go GFCF, did not try the right supplements, gave up too soon) even more harshly than others. Let me just get one thing straight. I never, ever, thought that 2 years ago my son would be on medication. We DID cut out diary, ate organic food, gave him Cod Liver Oil, DHEA supplements, vitamins, we tried clay baths to help him 'detox', and I am sure I am missing some other stuff we did. We even tried some supplements that were supposed to calm him and make him think clearer. What happened? He went psychotic. He was WORSE. He peeled off the baseboard in the bathroom, he tore through the drywall, peeled off the paint, and destroyed nearly every door in our old house from the constant banging. Despite all of the above mentioned treatments, he was still non-verbal autistic. The only supplement that offered reprieve was his melatonin-at least he could sleep through the night. However, as time wore on and he got older, his stimming got worse, and it seemed like we would have these manic episodes that would last days. I don't think anyone living in our house at the time of these episodes would doubted us. It was horrible. It was not a decision we took lightly-and I don't think ANY parent does. But, not all autism is 'recovered' through special diets or supplements, and we are doing what has worked best to date. That does not mean that we are now totally resigned to medications to help-we are not. We are still pursuing chiropractic care, and possibly some other forms of natural therapy. I am trying to go with what Nick really likes-and that is pressure. We are in the mindset of doing what works for my son. Why is there such a stigma with meds? If it works, then it works for that child. Moms should not begrudge other moms for doing what works for their kids. We already have enough to deal with, we should all be supporting one another in this journey-not tearing each other apart.

Ok, off my soapbox now. We had a great weekend (and this post was NOT directed at anyone-just general) and I think we even made some new friends! Nick spent all day outside today. Barefoot, and just immersed in doing whatever came to his little mind. He was happy, and we heard lots of his silly talk. I went to Barnes and Noble to order the new book by Susan Senator. She was nice enough to include some stories from families, and we just happened to be one of them. The book is called "The Autism Mom's Survival Guide". Once I get it, I will post some more about it. I loved her first book "Making Peace with Autism". That was the first book where I could relate. Up til then, the kids I had read about all appeared to be higher functioning, or offered hope of miracle like 'cures' through special diets and such. This book was REAL. She was telling it how it really is, and how she finally came to accept autism. I often wonder why these talk shows cannot have someone like her on them? I am sick of certain celebrities being looked upon as autism experts. I would love to see someone like Dr. Temple Grandin, or Susan Senator, or Donna Williams, or Dr. Simon-Barron-Cohen....just ONCE! Try giving those people some quality air time...not those celebrities who shall remain nameless.

Wow, this turned into some sort of a vent! I am watching my darling 6yr old propel himself around the dining room table by sitting in his little Tonka Dumptruck. He is flapping his ears and holding a Spiderman sticker, and jibbering to himself. He is happy, and so are we. Isn't that what it is all about?

Breathing Again.......

2010-04-06T18:20:00.000-07:00

I think it is safe to say that for the better part of the last 9 months or so, we have been under some sort of siege with Nick's moods. Outbursts were becoming ever more frequent and aggressive. He could go from happy-to pissed off in the blink of an eye. There were many days when this happened every hour, every 30 minutes, all day long. Sometimes we knew what set him off, sometimes we didn't-and would wander around asking him "what happened?" only to be slapped, or have something hurled in our direction. I was always afraid it would strike while driving and he would launch his sippy cup. That was my fear always when he had a drink in the car. Or even a toy. Or sometimes even Nick himself. He would be in his room, curled up on the floor of his closet screaming. He would be completely unable to function, and this could go on for hours. Days like this his therapy would consist of just trying to snap him out of it. His therapists were mainly just trying to control the damage. He banged his head, hit himself, bit himself, hit his therapists, pinched them, screamed, shouted, slammed doors, overturned chairs, you name it. To see him like this was heartbreaking. Then, after a few days, he would be completely the opposite. Saying words, eye-contact, joint attention, laughs, smiles, everything. Then, suddenly a few days later we were back to hell.

I came to the conclusion that we needed more help. I wanted Nick to be comfortable in his own skin. I wanted it to just stop. I contacted his doctor. He had not seen Nick in more than a year, and I explained to him all that was happening. He gave us a prescription for Risperdal. A very low dose (.05mg), just to take his 'edge' off. We saw results immediately.

-instead of stimming all through dinner; Nick was able to sit at the table and just eat like the rest of us.
-his toe-walking and stiffening have decreased dramatically; my baby is no longer stuck in a stimming cycle. He still stims, but he is relaxed.
-little things like me driving him to school used to cause him so much anxiety that neither of us enjoyed it. Yesterday, he only whimpered twice.
-he talks more.
-he is happy, and he is comfortable.
-Our stress has decreased dramatically as well. We can breathe again. My shoulders and neck no longer hurt.
-We are enjoying our son.
-Significantly less yelling and tension in the household.
That is worth it. To have a Happy Home. A peaceful home.

Mommy's Exhausted...

2010-03-27T19:30:00.000-07:00

7:30 a.m.: Woke up. Funny really as I don't even remember falling asleep. My mind is already racing with all the stuff that needs to be done just to get us out the door this morning for soccer. First thing I think: The laundry is still in the washer. Second thing: Must shower. Showering is good. Very good.

8a.m.: The process starts. Move laundry out of washer into the dryer. (in order to accomplish this, I must first empty the dryer...have I mentioned my disdain for laundry??) Search through dirty clothes for Michael's soccer uniform. Realize that he did not put it in the dirty clothes from last time. Oh well. At least he'll have clean underwear on right?? At least, I think.

8:30-9a.m.: Get dishes done and start preparing breakfast. Michael wants mini cinnamon buns, while Nick gets his usual of two waffles. The dog of course goes in and out at least 15 times during breakfast alone. He is old and probably forgets that he just went out, among other things.

10a.m.: Breakfast is done and I am cleaning up our morning dishes. Let the boys do whatever for a bit while I watch a little TV.

10:30a.m.: Start the process of getting Nick ready to go. Change his diaper, get his clean clothes, and brush his teeth. At six years old he still requires most of this to be done for him, although he is getting a little better at helping at least. Michael starts to slowly get his soccer uniform on. This takes a while because he is watching TV while he does it. Somedays Nick even doing stuff on his own is faster than Michael.

11a.m.: Boys and me are ready, all that remains is waking up hubby and well, he can dress himself.

By 11:15 we are out the door and headed to the soccer field. The game starts at noon, but coach wants them to be there by 11:30 to warm up.

1pm: Game is over. We are all pretty hungry by this point and stop off to get some Burger King for lunch. By 2pm Michael had to be at the Youth Center for the end of season party. So, in less than an hour the kid had a Jr whopper meal, and pizza. You'd think we never feed this child with the voracity in which he devoured the pizza. One of his coaches asks if we will be at the Easter Egg hunt the next day. I say "probably not, because our youngest does not enjoy stuff like that". She walks away clearly puzzled and most likely thinking "What little kid does not enjoy easter egg hunts?" Ummm, this kid. He would enjoy being outside, but he would not grasp the concept of hunting for brightly colored eggs. On a small scale (like our backyard), sure. Not with a gaggle of other children and their parents. Can you say "Overstimulated"? The child met his social outing quota by being schlepped to see "Reptile Man" at Michael's school earlier this week. By the end of the program, I had managed to get Nick to the front door of the cafeteria-that was it. Fortunately, as it turns out, being on the outside of a room full of snakes is socially acceptable. We were not the only ones watching from a distance. Michael however, was right in there enjoying every moment. He's used to Mommy having to stand on the outside sometimes.

3pm: We finish with the Youth Center. (I did not take Nick to this-it was just myself and Michael). I actually got to talk with some of the other parents-what a concept! Afterwards, we head to Barnes and Noble to pick up the latest book in the "Diary of a Wimpy Kid" series. Michael has begged for it now going on about two weeks. I caved in finally.

By 5pm we have made it home again, picked up Nick, dropped off Michael, and head to the grocery store. 6pm we are on our way back home to unload the groceries, and start something for dinner.

7pm Lasagna is cooking, and I am making Ravioli for Nick. 7:30-bath time for Nick, and by 8pm he is taking his medicine to go to bed.

By 8pm I don't know who is more tired-me, or Nick. That was my day in a nutshell. I am tired just typing it!

Screaming, Biting, Banging....Had them all this week.

2010-03-26T18:00:00.001-07:00

Another week is coming to an end, and I must say, I am glad it is over. Not that things have been that bad, just...challenging.

Last weekend I had weekend duty at work. So, I was put on night shift for two days. Which of course, messed everyone in my house up. Not sure about your house, but in mine, if mom is not awake during normal times-then everything seems to go south very quickly. Daddy tries to handle things, and for the most part he does a good job so I guess I should not complain. But, there are just things that mommies are better at doing. And the little boys of mine know that. For simply fun, you go get daddy. For everything else, mommy is where it's at. Needless to say, Nick was discombobulated-but held it together rather well. Sunday night however, we saw some disturbing behavior. I put Nick to bed with his normal dose of melatonin, and kissed him goodnight. About an hour later I am sitting at my computer in the dining room and I hear Nick just start screaming. Unusual. Especially with melatonin. I go in there to find Nick biting himself. He sits up and proceeds to bang his head on the wall. I try to comfort him, but it is no use. He simply lashes out and slaps me. He then bangs his head again. Words can not describe how helpless you feel when your child is locked in his own mind and cannot tell you what is wrong. After more than an hour of intermittent screaming,biting,and banging (the three ING's at our house), our only conclusion was that he might have a headache. I scour the hall closet for some Tylenol-we are fresh out. Damn! By this time it is around 10pm, but I don't care. I leave Nick bundled up on the couch with daddy holding his hand and go out for the Tylenol. First store closest to our house does not have any. Damn, Damn! I then head toward a gas station a little further away, and finally see the best thing in the world to me at that time...TWO whole bottles of Children's Tylenol. I snatch one up and head home. By the time all I said and done, it is midnight before sunshine gets to bed. I was hoping it was just a fluke episode-but it has happened a few times since then. Don't know what is going on; but I am going to ask his doctor next week when we go.

Speaking of that, I actually cannot wait until Thursday. Nick's language seems to be at a boost right now, and he is doing well in his therapies. When he is able to concentrate. And is not stimming at lightning speeds. He needs some more help. The mini tramp is good for re-directing his energy-but only goes so far. He cannot relax. When he is; he simply does amazing. I have also asked his doc for a referral to a chiropractor. One of his tutors mentioned Nick to him and now the guy wants to see how he could help Nick. He is not charging us anything out of pocket-just what insurance covers. So far, he has only treated NT adults, but is interested to see if he could maybe start branching out into treating kids on the spectrum. So, Nick will be his first ASD patient. Maybe it will help Nick be more comfortable in his own skin. All I want is for my baby to be his absolute best. Like I said, Happy Nick we can deal with. I am not looking to 'cure' him, or drug him for my pleasure. We have not come to this decision lightly. This has been cropping up from the back of my mind for a year or so. Diets & Supplements just did not yield enough results.

Don't be fooled by this happy demeanor....

2010-03-17T18:58:00.000-07:00

That is what I am having to tell myself today. Nick has been in a happy mood all day long. The weather was nice out, so hubby let him wander around in our fenced in backyard. Nick was happy as a clam. All of this talking and smiling is what has lulled us into that false sense of "all is well" in the past. This is the Nicholas I want him to be..this is the Nicholas HE wants to be. Happy, playful, talkative(even if he was repeating "Nick don't get the vacuum!" over and over :) ) asking to be tickled, coming up to us for fist pumps(which is uber cute by the way!), playing with his toys instead of thrashing about the house destroying our doors. In an instant yesterday all that was gone. Replaced with screaming, throwing toys, hitting me, and just all out losing control. I spent 30 min just sitting with him on the couch. Nick was curled up in a ball in my arms and we just sat there. I was happy that he was being cuddly, but I could have done without the screaming and throwing.

Happy days such as this tend to make me forget about the bad days. They make me think "Oh I can handle this", "It's not that bad". Then WHAMMO! We get hit with several really bad days in a row where nothing is going right. My parents did tell me that they would possibly help to buy him a squeeze machine; since he really seems to like pressure.

I took my parents to the airport yesterday morning. Had to get up at 3am in order to get to the airport by 5am. I came back home, put some mini-cinnamon buns in the oven for Michael, got him up and ready for school, then I passed out on the couch until around 11am. Not much housework got done yesterday I tell ya.

He Does What he Can

2010-03-15T18:32:00.000-07:00

I have not posted so much lately due to us having family visiting. It has been wonderful having an extra set of hands around here to help with things around the house, as well as the kids. I now know that I could get really used to having someone like a nanny to help with things like calming Nick down from a meltdown, or tending to dinner while I get some time to do some small cleaning. Having someone who will clean up the dirty dishes after dinner while I get the kids a bath has been divine. Of course my mother did not have to do this-I did not make her; but she did it anyway just to help. We of course had plenty of time doing other things too. Taking Michael out for an afternoon; just him. He got some Legos, some new rollerblades, and we went to see the movie "Tooth Fairy". Nick also got his very own day in which he was allowed to pick out any toy he wanted. There was no apparent limit, and the kid could not have been happier. He was all smiles on his day and he KNEW it was his day. He said first thing in the morning-HAPPY.

We have one more day with them before they head back to Florida. They have been a huge support system for us regarding Nicholas. "He just does what he can" my mom says. My mom has been very supportive in getting more help for Nick. More help as in possible medication. I have been toying with this idea for a few months now. Only because I cannot find any correlation/cause for some of Nick's severe stimming/anxiety attacks. He gets very tense and just seems to go completely wild. He will be like this for a couple days, then he will be completely the opposite. When he is not this way he is doing remarkable things. Like looking at us when we call his name, following two step directions, speaking to us, requesting things from us, and just all around able to focus. When he is not like this, he is stimming so severely that it is impossible to get anything out of him. There is also a huge gap between what he does at school, and what he does at home. There is just too much difference between his "good days/bad days". I had hoped it would not resort to this; but if it will help him then it is worth looking in to. I was just hoping he would not be that severe to need medication-but I cannot deny it any longer. The calm and relaxed Nicholas is more lucid. He is happy-and he knows it. He is able to communicate better and enjoy himself. The stimmy/anxious/tense Nick does not enjoy anything. He is not "there", and is not happy. I just want something to help take his edginess off. I have been e-mailing his doctor, and we have an appointment set for 1 April.

Wish us Luck....

We are FUNKdified....

2010-03-05T19:13:00.001-08:00

Ugh, Nick is in one of his funks. Don't know how else to describe it really. It has been going on all week. It is one of those "I am so rambunctious and in need of stimulation that I cannot sit still". No, not even for a second. He is all over the place physically as well as emotionally. One minute he is fine, the next we are on the verge of total implosion. Not even therapy was a repreive-as he pretty much could not pay attention to any of it this week. Wednesday the slightest thing would totally set him off and we were simply trying to make it to bedtime. One of those weeks where I am just trying to hold it together hour by hour. And tomorrow I got to take Funkboy to the airport to pick up family. Not enough Tylenol in the world for me right now. I have to mentally prepare myself for the stress that he will undoubtedly cause. I am taking him in his stroller-because I simply cannot handle him right now any other way than confined. Yes, it may look strange to have a six year old in a stroller-but I don't give a shit really.

I Give Up...

2010-03-03T20:17:00.001-08:00

On the whole door thing. I know I will never understand it, can barely prevent it from happening, and it is not seeming to be going away anytime soon. Our house is locked up like Alcatraz already, and we are in need of more locks. I was attempting to get in a quick nap on Sunday-and had things all locked up. Informed hubby of my whereabouts, and everything was set. I HAVE to lock our bedroom door if I want any kind of respite. Otherwise Nick will come flying in, and start with the closet doors. As soon as I get him away from those and back in bed, he starts with the bedroom door. It becomes a vicious cycle. Closet doors, bedroom door. Closet doors, bedroom door. Lather. Rinse. Repeat. This time, I had managed to get in a few precious moments of bliss, when suddenly I heard a dreaded "WHAM!" It came again "WHAM!" Since nobody else seemed to hear this slamming noise (still don't understand that one??) I investigated. (rather loudly I might add). Nick had moved on to the garage door. This door is not exactly light. However, Nick has taken this door thing to a whole new realm recently.

.....Gas tanks have doors on them dont'cha know. See where this is going?? At first it was our gas tank. Not too bad-let him do it a couple times then "all done". Now however, little mister can spot those little gems in a nanosecond. Yesterday he ran right across the street to the minivan parked on the curb. He has also found the gas tank on his school bus. Parking lots have become a nightmare. If you are not paying attention and holding him with only half your strength, he will weezel out and run like lightening to the nearest gas tank. If you have never seen how fast lightening can run, just stop by sometime. Today it happened to be a silver compact car with its' occupants still inside it. I am sure they were wondering what that little boy was doing careening towards their car, and his frazzled mom trying in vain to regain control.
....Nana and Grandpa are going to get a workout.

Dentist

2010-02-27T09:43:00.000-08:00

This week was a busy week. But then again, every week is busy around here it seems. Nick had his very first dental visit on Tuesday. This was a two-person effort-hubby would not get to stay home for this one. Nick was understandably anxious as we entered the building. He had to go in an elevator-something that he is leery of, but he did spectacular. Once we got to the waiting room, it was filled with other kids and Nick was already on edge. He was running everywhere. Hubby did not even get a chance to sit down. He was on full-blown Nick patrol while I filled out all the paperwork. Even so, Nick managed to get behind the counter and start slamming cabinets. The forms started with the usual; birthdate, sex, etc. But then I got to the middle portion that said something like "circle all that apply"...hmmm, Speech Delay..yes, Developmental Delay...yes, neurologic something...yes. Then I see different conditions listed on the bottom portion. Bingo. Autism was one of them. I also listed some of his sensory issues, as this office would pretty much push him into sensory hell. Then it asked something along the lines of what requests I have for my child. I found myself writing "treat him like a normal child, talk to him like any other kid and explain everything you are doing". He is autistic, but he is NOT stupid. We do not treat him like that at home, and I will be damned if anyone else treats him as such. Anyway, the time comes for us to go back into another office to discuss what brought us here in the first place. The assistant is very nice and laments on Nick's long eyelashes and big blue eyes. She is very patient and explains we will just do as much as he lets us do. If we get to a cleaning, we get to it. We will just do what we can. I already like this place.

We take Nick back to an exam room, and get him situated in the chair. He is bestowed with a small magna doodle, and a pink toothbrush that a nurse accidentally gave him. She went to try and exchange it for a blue one, but hubby told her there was no need, as Nick likes pink. Nick does not see gender specific colors, all he sees is that pink is a nice color and he likes it. Even his therapists have noticed that he just seems to like pink. The Dr comes in and takes notice of his adult tooth growing behind his baby tooth and that his mouth is very small. She says what we had been thinking all along "hmmm, that tooth will have to come out, as well as the one beside it to make more room. Otherwise, his teeth will be all bunched up. See? There's not room in here for it to grow in the right spot. He will probably need braces later on, but we will do what we can right now." Nick is squirming and crying just a bit, no where near the scale as he got his vaccines though-this is going rather well. We actually managed to get through a cleaning. Success! Hubby came out going "wow, that was alot of crying." I looked at him like he was nuts. "That??!" "Oh no, that was nothing. You should have seen him when they gave him ONE shot. Really, that was just a little whining."

We schedule his tooth extraction for a few days later. Yesterday. Yesterday Nick walked into the office like a pro. He pushed the button for the elevator, and waltzed in like saying "I got this." In the waiting room, Nick was stimmy-but happy. He jumped and flapped while looking at all the toys. One little boy was asking questions about him. Things like "why is he doing that? why does he like that?" His mom explained that he was autistic and did things differently. Hubby piped in "yes, but he knew his ABC's and could count to 30 when he was two!"
"Wow, really?" the boy said. His mom even chimed in "Yes, he is very smart isn't he?"
I did not mind that the little boy was asking questions-it is better than simply staring. And we got the opportunity to give them a little education. Mike presented them with a little card that explains autism, and told me "I carry those around everywhere; so when people stare I give them one." This is from a guy who would not even say the word AUTISM a few years ago. Now, he tells anyone who will listen.
We went back to the exam room, and this time Nick climbed into the chair by himself, and requested that the light be turned on. We gave him the sunglasses to protect his eyes, he had some tape to feel on his hands, and a magna doodle. He was ready. He barely flinched as they gave him some numbing stuff for his mouth, and a few minutes later it was time to pull. The first tooth came out in no time, as the roots had already been degraded by the adult tooth behind it. The second tooth took a little more time, a little more crying(actually, hardly crying-more like whining)and a few more minutes later it too was out. We were done. Nick walked out like nothing had happened. The funny part came on the ride home. Nick was blowing raspberries and sticking his tongue out due to the anaesthetic. The dentist was wonderful, and I would recommend them to anyone. All in all, it proved to be not such a big hassle after all.

Silence is Golden.....

2010-02-18T21:46:00.000-08:00

It is quarter to ten pm and the house is silent. Between all of Nick's therapists, the dog, plus the boys themselves-this house is one busy place 90% of the time. Tonight was therapy and then right to soccer practice. Once practice was over, we piled in the Jeep and grabbed some B.K. for dinner. Headed to the store to buy some more baby wipes, drinks,etc. and then came home around 8pm. Everyone ate, some got baths, and story time (Nick is really big on requesting "wanna read a book"-so I cave like always). A little dose of melatonin and Nick is in dreamland inside of 30 min. Unlike 3-4 hours without.

Michael too is asleep. Tuckered right out after all that running. Oh how I love soccer season for that very reason. Even the dog is passed out. YAY Me!

Much Ado About Nicholas....

2010-02-15T11:25:00.000-08:00

This weekend was all about Nick. 6 years ago on Feb 12, a beautiful baby boy was born. Around this date 4 years ago, that same beautiful boy was diagnosed with autism. It has been a roller-coaster ride ever since. We have had lots of "on the job" training-as no one can prepare you for life with autism. We have learned a lot of things on the fly. We have come a long way as individuals, as well as a family. Nick turned six on Friday. Saturday I took Nick to Toys R Us for a day of spoiling. I originally was not going to take him simply because I wanted everything to be a surprise. Mike insisted that Nick go along.
"Let him pick out what HE likes, not what YOU think he would like." I was kind of miffed at this, as I like to think that I KNOW what Nick likes, but I listened and took Nick along.

I was pleasantly surprised at what Nick gravitated to. He did in fact like everything. Baby toys caught his attention, but I kept moving along hoping to find something that was more age appropriate. A part of Nick still likes the baby toys, and I get torn between what to buy. He is getting older, and I want toys that reflect that. It seems only respectful to him that his surroundings reflect more a kid of his age. He also seems to LIKE it. This year he picked out a cool looking dinosaur that roared and walked when you pushed a button. The age range was from 3-8yrs. We also found a mini-trampoline, and a 3D picture projector. I figured if he thinks in pictures, then by G*d he is going to have the best ones we can get. I bought all the slides that come for that projector. Soon he will be informing us about life on the African Prairie.
We then went to Safeway to pick up a birthday cake. This is where autism can strike out of the blue. We walked up to the entrance, and Nick starts to pull back. He is resistant to going in. I tell him it is ok, and we are going to get his cake. He complies, trusting what I say. But he quickly gets overloaded and a meltdown is ensuing. We have learned throughout the years to become good at detecting what his triggers are. I quickly realize what is setting him off. There are thousands of helium filled balloons all with bright colors,and a whole forest of colored flowers filling the air with their scents. All of this at once is bombarding Nick's senses and he quickly covers his eyes and starts screaming. I wheel him through in record speed and am able to avoid a full-blown meltdown. But that was still not before we drew a few stares from clueless shoppers. I pay no attention to them, as they do not have any comprehension of just how close we had come to a scene much worse-and they would be amazed at this mommas quick response. We buy the cake and here I am having to wheel Nick through this sensory hell again in order to get to the car. This time however, I am prepared. I prep him by saying "Ok Nick, we have to go this way to get to the car. It will just be a minute, and we go to the car. It will be alright." As I say this, he is already covering his eyes again, but I just keep chanting "It's ok..almost done." Then as we exit I announce "See, we are all done now. We go to the car." Nick takes his hands away from his eyes, and all is well. Smiley boy is back again.
Nick also got several garden pinwheels from our former neighbor. She remembered he liked those and had no qualms about spoiling him with tons of them. We also bought a German language CD program. Maybe he can learn his dad's first language-since he seems to have the ability to pick up and repeat multiple languages. It also pairs things with pictures. We celebrated his birthday last night with a simple family party. We all sang "happy birthday" and Nick smiled that darling little smile of his as if to say "I feel so loved right now".

As Temple Grandin would say "Different, Not Less."

Weekend plans....

2010-02-12T19:47:00.000-08:00

This is our first weekend for soccer. Michael has a game tomorrow at noon. After that I am thinking of either hitting the gym or going for a run-depending on the weather. Sunday we might have a little party for Nick-his parties are never very big affairs as he does not enjoy a whole bunch of people. A simple cake and some gifts will do just fine with him. Other than that, not much going on at all. Just the normal weekend chores of grocery shopping and housecleaning. We are also watching the Olympics. Funny to think such a big event is going on only 4 hours north of us. Hope everyone has a great weekend!

Just a few questions to ask some of these companies....

2010-02-08T17:10:00.000-08:00

1) Can you please make a 'noiseless' microwave? We would actually love to use ours with no screaming from the boy.

2) Can you make potty seats big enough for a nearly 6yr old who has a very skinny butt? One that won't smoosh his manhood?

3) And while we are at it; can you also make a noiseless dishwasher? Not even the so called "quiet" ones are truly quiet. We should know. Our kid has supersonic hearing.

4) Whatever happened to the "Gerber Little Flakes" cereal?? That was the only effing cereal the boy would eat. With no screaming. Now we have been forced into the unknown and I am not sure I can mentally handle that right now.

5) Could we also get some pediasure that won't give him diarrhea?? When you have one of 'those' weeks (and all you ASD moms know 'those' weeks) it is a real toss-up between nutrition and stools. Stools has won everytime-because no one in our house wants to change a weeks worth of loose, runny, crapola.

6) Can you please make items that are GF/CF/SF a little more affordable????? I mean, without all that extra crap in there-why is it so expensive?? My brain says it should be cheaper...but that's just me. Isn't rice more abundant than say..cows?

7) And why the eff do public toilets have to flush so damm LOUD?? Hard to potty train the kid when the simple act of flushing the darn thing sends him out of his mind. All thanks to that super-duper hearing of his.

I would also like to thank the following companies for their brilliant products:
Safety First: Lovely light switch cover. No more masking tape.
First Years: The BEST damm baby gates EVER. They might just be indestructable. But you have to get the ones that bolt into the wall. Nothing else worked. Saved us from a nervous breakdown due to constant cabinet slamming.
Step2: Best toy kitchen. I have seen this at many an ASD house. Something about those darned cabinets!

Ramblings.....

2010-02-03T18:27:00.000-08:00

I am sitting here watching Nick ever so slowly eat his dinner. Chicken, mac & cheese, and green beans. We have been here for almost an hour, and we are just finishing the chicken. We still have macaroni and beans to get through. No worries though. Tonight he can take his time. We had a relatively early dinner, so he should be fine as soon as he swallows the liquified chicken he has had in his mouth now for 20 minutes. A good trick we have learned: Giving him some applesauce seems to speed this process up a bit. As you can imagine, brushing his teeth when he is in one of these hoarding phases is simply a nightmare. Filled with lots of crying, and lots of liquified food spilling out of his mouth. I don't know why he does this. Most of the time we can figure out why he likes to do things, which leads to us understanding him better. This phase we just don't get. It comes and goes, and we never know when or how long it will last. We simply get through it. I hate, hate, hate it. I hate not being able to figure out WHY he is doing it. It gets so frustrating for both of us. Yesterday Mike told me Nick started breakfast at 8:30am, he finished at 10am.

Adding to the mayhem is our now disabled dog. He went outside last night just fine, came back limping, and has been limping all day. He is very old, so I am thinking it could be arthritis. He is able to bear some weight on his leg, but not much. He is actually doing better tonight than he was earlier today-but still hopping along slowly.

As if school, therapy, work, and dog were not enough; we have now added soccer to our schedule. Practices are Tuesdays and Thursdays 6pm-7:30pm. Right in the middle of Nick's therapy sessions. Mike and I will have to take turns going to practice with Michael. Life is all about finding a balance. We still struggle with balancing the needs of both boys. Nick needs so much more time & energy that most days we are mentally drained, and Michael just seems to blend in with it all. Soccer is HIS time in the parental spotlight.

IEP meeting..

2010-01-26T20:52:00.001-08:00

We had Nick's IEP meeting last Friday. It went rather well, but what shocked me was the fact they said that he had no functional language. HUH?? They clearly saw the look of confusion on my face, and I told them "Umm, yes he does. He asks for things all the time at home." And even lately he has begun making his own choices. When I ask "Do you want milk or juice?" instead of just repeating "milk or juice?", he will think about it for a while and then say "Milk." or "Juice." So to tell me he has no functional language was quite the shock. This is a child who came to me the other day and told me to fix a car that he wanted to play with. He even brought me the car! Today he put his bowl on the counter and said he wanted fish crackers. The thing is, he may do all this at home-but in school it might be a different story. They jotted down all the notes I was providing them, and were astonished by what he does do at home. I told A (his BCBA) this and she had equal confusion. She made a note to go and visit his class and observe how he is in school, and maybe give the teachers some pointers.

Today we met with A to discuss re-vamping Nick's home program. He was breezing through so many programs in the fall, but has now seemed to hit a wall. Things are hit-or-miss with him. One day he will get it 100%, the next day it will be 10%. We are looking for more things to really motivate him. They are also going to start incorporating some of the Early Start Denver model into his programs. It is a less structured form of ABA and more natural. (from what I have been told) It goes through all the developmental phases of early childhood. Little things like following points, and being more "socially" tuned in. We hope to see a lot of progress in 2010. The best thing is right now he has already come so far! He is really starting to blossom. In HIS time.

First week in the new house..

2010-01-24T10:13:00.001-08:00

We have completed our first week in the new 'crib', and it is starting to feel a little homey. The first few days last week we were going back and forth between the houses which left us no time to really set up the new house. We had to clean the old house to meet base requirements(that is a huge chore unto itself). I had to work, and we had a couple of days that we were quite "overbooked". Wednesday we hired a cleaning crew to finish up what we had started. All they really had to do was wash the walls, clean the floors and baseboards, and just straighten things up a bit. They did a wonderful job and ended up finishing everything 30 minutes prior to our final inspection on Friday. Which was supposed to be at 9am. Inspectors did not show up until 10am, and I had Nick's IEP meeting at 11am. UGH. Why is my life like this?? So overscheduled. We ended up passing our inspection; and making it to our appointment. Why is my child so into doors???!!! This is not just something that happens at home now, it happens everywhere. Everywhere we go has a door. A door that must be slammed open and closed at every possible opportunity. It is quite exhausting taking this child of mine out sometimes. Yesterday's Dollar Store trip was not quite tranquil. Nick thought it was fun to knock things off the shelves and watch them fall to the floor. Then he thought my reaction was uber funny. We quickly headed out of there to Target where I could put him in a basket and not have it look so funny. (Afterall, he is a gangly/tall nearly 6yr old-whose feet nearly drag on the floor in the front seat of a cart)He now rides in the back-all sprawled out and making lots of happy stimmy noises. People look regardless, so at least they can look at a happy stimmy child rather than a rambunctious child and one stressed out mommy. Right??

Anyway, I got my pictures up on the walls last night with lots of help from happy stimmy boy. He was jumpy, flappy, and had fun lining up the frames in the hallway. As I hung one, he would slide the rest on the floor to make room for the new one he took out of the box. Did I mention he was happy-stimmy child?? There was lots of jumping, screeching, and overall giddiness. It made a boring job rather fun actually. Where does he come up with this stuff??!! Never known anyone to be soooooo happy about hanging pictures. We had a couple of good laughs.

Today, we are off to Target again. I found a few inspirational quotes to put on the walls thatI like. We have a big empty wall right when you come into the house that can use something like that. I can use a little uplifting myself every now and then.

New House!!

2010-01-20T20:34:00.000-08:00

We are finally getting all moved in to our new abode. Oddly enough, for someone who is not supposed to like change, Nick loved this house from the get go! He has his own room with all of his own stuff in it, and we have had ZERO problems with transitioning him. The only time he screamed: when we had to go back to the old house to get more of our stuff and to clean it. He hated seeing things in such disarray and made him uncomfortable. Sunday we were able to get respite care for him while we went to the old house to clean up. That way he was able to stay *home*. Both the boys LOVED riding in the U-Haul truck with daddy-that never seems to get old. To Nick, that was almost as good as riding the school bus!!LOL! He is such a little boy :)

Michael has his own "boy cave" with his video games, and he has even joined the 20th century with a tv in his room. We made it ten years with no tv in the kids' room, but he is getting older now and it is a step up. Can't treat him like his little bro. Little brother is never far away though-yesterday when Nick needed some comfort, he went to his big bro's room and laid on the floor listening to Michael and his TV. I think they both like having their own places to go to get away from it all. It seems to be working well so far.

We are still getting everything situated. Once we do I will post pictures. Just wanted to get on here and let everyone know that we are still here and doing fine :)

We Are Moving......

2010-01-14T22:28:00.001-08:00

Into our new house tomorrow. We are picking up the U-Haul truck around 2:30, and we get the keys to our new house shortly after! I am so excited! There is a nice big playground RIGHT outside our back fence, which will be lovely for the boys in the summer. It has a garage!!! Yes, I am excited about a friggin' garage. We have only had carports. Not so lovely for storing things. We will also have a pantry-no more using up cabinet space for food items, and I think the most thing I am excited about....NO MORE BASEBOARD HEATERS!!! For all of my family who has never heard of these, since they live in WARM Florida, they suck. Just so you know. You can't put anything within 6 inches of these awful things, because, well, it is a fire hazard. Try designing a room around that shit. Michael had a blanket from his bed fall onto the heater in his room and it made a godawful smell that permeated the room for days. It didn't burn the blanket as it was not too hot, but warmed it enough to produce some "aromatherapy". Long live central heating!!!!

The boys are excited about moving. Nick has taken to placing certain fave items by the door as if to say "Don't forget this!" He knows something new is going on with all these boxes packed up, and the fact that his matress is now on the floor. He likes to explore new places, as long as he has a place to go for comfort if he needs it. Don't we all like our own "comfy" places?

We won't have internet/tv/phone until Tuesday. So, it might be a quiet weekend actually. Maybe we will break out some board games from our camper? Have a good weekend everyone!!

Something on my Mind...

2010-01-10T19:34:00.001-08:00

There was a post on a bulletin board not too long ago. Click HERE to read the article. The story is two mothers were shopping in a local store. One of them had a baby, the other one had an older child. The mother with the baby goes and starts telling her baby "say Hi to the girl". The other mother, tells this mother "Don't let my child get near the baby". But, it was too late. The older child had hit the baby. Before this happened, the mom had said that her daughter has issues and not to let her near the baby. The baby was not seriously hurt, and cried for a few seconds and then was fine. As a parent who has a special needs child, I have been in these awkward situations. Having to apologize for my autistic son when he hit them. It has not happened a lot, but it has happened. Nick has no idea that what he is doing is wrong-he just knows that he is upset. Therefor, trying to tell him what he did was wrong is not going to compute right away. It takes time and lots of repetition. We also try to avoid these outbursts, but honestly, sometimes they just happen and you can't do anything about it. Such is life with having a disabled child. Now, I also have a typical child. And yes, if someone came up and hit him I would be mad. But, some of the responses to that post were just downright horrible. Suggesting that we put our children in "higher" care if we cannot control them, that they are a danger to the general public, and that we should leave them at home. Some question our parenting skills and say things like our children are one step away from being a felon or worse. These are mothers saying this. This is the kind of thing we have to deal with everytime we take Nick out. I can feel people staring at us. Wondering what is wrong with that little boy in the basket as he grunts and bangs constantly on its sides. They stare, and probably talk about him as they are in their cars going home. Sometimes it doesn't bug me. Sometimes it does. Yesterday, it bugged me. Then on the way home, my mind wandered to think of Fran Peek.

Fran's son, Kim Peek, was the inspiration for the movie "Rainman". Kim did not have Autism. Instead, he had Agenesis of the Corpus Collosum-with other impairments. He memorized every book he ever read, new every zip code in the US, among many other amazing feats. Doctors told his parents to put him in a home and forget about him. Kim never went to an institution. Instead, his parents loved him and raised him at home. After his mother passed away, his father, Fran, tended to his every need...every day. Since "Rainman" Kim has had many speaking engagements-accompanied by his father. He continued to learn social cues, and was even developing a sense of humor. Kim Peek died over the holidays. He did not die from his mental condition, he died from a heart attack. His father outlived him. Of course, this is every parents nightmare. But think just for one minute. Kim never had to be institutionalized. Fran never had to worry about who would care for his son when he passed. Never had to worry about the care he would recieve, or that other care givers would simply exploit Kim. Kim lived at home his entire life, and got to travel to world renowned places sharing with the public his amazing abilities. People like that give me the strength I need to make it through another day. The world has lost a great mind, and a great person. We can sure use more Fran and Kim Peeks in our world.

The Power of "NO"...

2010-01-06T21:56:00.000-08:00

Last week we noticed that Nick was shaking his head from side to side while sitting at the dinner table. I had put some food in front of him and he began shaking his head. We just thought "Isn't that nice, another sensory stim, ok Nick let's move on now" We thought that, well, because a lot of what Nick does is purely sensory related. From smacking things, to rubbing his head on the carpet, to grinding his teeth. All of these have been phased in and out of our lives at different times. We don't really give it a second thought anymore. I am realizing though that maybe we should. Case in point, the head shaking. The other day, Diane and I had a chance to talk in the hallway while Nick was on a few minute break. She brought up something quite extraordinary. She got the impression that Nick was shaking his head "NO". She would ask him to do a certain task-and he would shake his head. He had done this several times throughout their session, all of them towards being asked to do something. In the few days prior to her and I speaking, we were starting to realize that Nick might just in fact be doing this. For those who have a disabled child, we often buzz around caring for them just as we had when they were an infant. Most of the time we don't even realize we are doing it. Time seems to stand still in that respect. They eat, drink, wear, etc. whatever it is we put in front of them (or feed them by hand) often with little to no protest. NO is a powerful thing. It let's someone know that YOU do not WANT what they are giving you. It let's them know that YOU indeed have a voice and opinion about things being done. It let's them know that YOU are a thinking, feeling, living person. For nearly 6 years Nick has not been able to say No. He has had to be happy with what was given to him. Nick, mommy and daddy are slowly getting a "clue". You are nearly six, and deserve to be treated as such. I am afraid you are discovering girls...in your own way, but also like so many other little boys. Yesterday you learned about Mickey Mouse. You are getting tired of Goldfish crackers for snack, you now like Mandarin Oranges. You love 80's music-and even sing a few songs. Instead of ripping my magazine to shreds, you carried it around for days looking at all the pictures. All four of us are learning on this journey my dear boy, and we are all better people because of you. Don't hold it against us Nick, we can't help being "neuro-typical".

Happy New Year!!

2010-01-01T01:41:00.000-08:00

Another year has gone by, and actually I am happy that it is done. I spent a lot of 2009 away from my boys and I hope that 2010 will leave me home more. We move into our new house in just a couple of weeks! Not anxious to have to pack up all our stuff and try to move with two kiddos, but at least this time we won't have to deal with feeding a newborn every 3 hours. When we moved into this house Nick was just a wee baby. With every new year it brings new promise. New skills gained for our Nick and new hope for what he can achieve in the next 12 months. He has gone from eating microwaveable meals consisting of lasagna and ravioli--to eating steak, pork chops, veggies, mashed potatoes, eggs, bacon, and anything else put in front of him. We have even managed some gummi candy, and a chocolate chip cookie. He follows directions, is counting up to 20, learning to draw shapes, and even learning to sight read! Today him and Michael were playing together and getting along. It was such a great thing to see. I often dream about my boys playing together. Except, most of the time it is just that...a dream. In my dreams Nick talks, plays, and runs around like any little boy should. He is not restricted by anything. I see them chasing each other with Nerf guns and laughing. Then the dream is over, and I wake up to reality. Except today, my dream WAS a reality. For that, I am thankful. I am also thankful to have had another year with two amazing kids and a wonderful husband. Happy New Year!! I hope 2010 brings everyone love, health, and happiness.