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

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....

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

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!!!

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

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.....

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.....

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.....

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.....