Best News of the Week!

Ever since we took the boys out of the previous school district last Friday, we have been waiting with bated breath as to where Nick would be placed. In the previous they sent him to the Elizabeth Lee Black school at the Barber National Institute; which is where we wanted him to go ever since we first saw the school on the internet. The two weeks he was there were fantastic! We got reports daily of how he was doing, what he ate, if he had any meltdowns, etc. But, since we were in a different district now, there was the chance that he would not attend that school-since he has to be referred there by the school district. I have been calling the new school district as well as Barber everyday this week to see what was going on. As of this morning at 10am they was still waiting on paperwork. I called his caseworker this morning and I am sure she could sense my frustration with the whole process being so slow. "It can take a few days for all the paperwork to get done. Just keep calling; you are doing the right things..."

I had to go to the store and get some more bread anyway, and it kind of took my mind off things for a little while. I grabbed the keys, said goodbyes, and off I went. When I got back, I started unloading everything and making Nick some lunch. Around 11:30 the phone rang. I knew who it was by the number...our caseworker.
Her first words were "I got some good news for you!" "Nick can start back here tomorrow morning!" OMG! That was a huge weight lifted off my shoulders. Mike said he never doubted Nick would stay at Barber; but until I heard the confirmation, there was always a chance they could say No. But, they have said Yes. It was a victory today. I went over to Nick; told him to give me a HI-5, and told him he was going back to school tomorrow!

Hellloooo Blogworld!!

Wow it has been quite a ride! I believe the last time I posted we were back in South Carolina visiting relatives for a couple of days before heading to our final destination. And holy cow that was one long sentence! After three days in Charleston, we headed up north. We spent one night in Virginia, and then the next day were able to make it up to Pennsylvania. We were just a few miles shy of our final destination before we stopped for the night. We spent a month and a half living in our 26ft trailer until we finally found a place. In that month a lot has happened.

First off, we got the boys enrolled in school. This will actually happen again this week since the schools they were in are in a different district than we are now. See, when we first got here the first call we made was to a realtor, who put us in touch with a campground. (Since by that time we wanted to be able to unhook our trailer from the Jeep....makes it a lot easier to get around town!). Now, mind you, this was FEBRUARY-most of the campgrounds were closed for the season. At least the ones with running water. But, the realtor managed to find us a gem of a campground that was still by some grace of the Lord, open. But, there were some obstacles. Even though this camp was open and had running water, every time the temperature dipped to below freezing it froze the water running inside our hoses to the RV. So, we had to disconnect the water when this happened. Not such a big deal when we could hook it back up the next day and just turn it off for the night times. Until we had a cold spell that lasted for days on end, and the temps remained below freezing. At that point, we were forced to buy bottled water to do things like dishes, and some cooking. We were also forced to use the camp showers. As long as you did not mind it being 19 degrees with 10" of snow outside-walking there was no problem.  Then there was the obvious fact that it was cold. Real cold. Which meant we were using the heater in the trailer. Which meant we were spending $30 every 3-4 days to refill one of our propane tanks. We tried to keep the other one as full as possible, but there were times where we had to refill them both. That is not too bad, but we also were spending about $20 in laundry a week as well. We went and bought some portable heaters and only used the propane tanks for things like cooking. That saved us a bunch! Now, one tank could last as long as two weeks! So, you get that living in the RV was not exactly easy, but we did it.

The boys were enrolled at first in the F school district-because that is where our RV happened to be parked. This district is probably the most wonderful school district I have ever been a part of.  Michael absolutely LOVED the school he was in-for the first time in his entire life. Michael was in school just days after we arrived here. Nick on the other hand, took a bit longer. We enrolled him in F school district-just like Michael. I think the best thing Nicks old school did for him was to make his IEP like 30-40 pages long. The district rep. read this and I got a call from her personally a couple of days later. They were going to recommend that he go to the Barber National Institute, and we set up a date to tour the school. We went on the tour, and Mike and I both agreed-this school is phenominal. It took about another week to get everything arranged with paperwork and transportation, and we were kept in the loop the whole time. Nick started a mere two weeks ago, and the change in him has been drastic. He hardly meltsdown. We have maybe had three minor meltdowns in the two weeks since he has been going to that school. He has his own 1:1 aide in class, the class is only 6 students. Everything in their school is adapted for handicapped kids as well as autistic kids. Autism is what they specialize in. We get daily reports of how he is doing, and he is making excellent progress. He is in what they call their Partial Hospitalization Program. In this program, everything he needs is provided by the school. Which includes the medication he is on. We are in the process of getting him an Access Card-which is what they use to get him these things in the school.  It will also get him his private therapies at home. All of this has been a whirlwind for us. We knew it would be, and it seems like an enormous undertaking getting everything we need set up. But, we are getting there. It does seem sad to think that this program is where my child really fits. But, after our experience with him in a more mainstream type of program, mainstream just isn't for him. His needs are too great. Now, we are just hoping that the new district says the same as the previous one did. See, he can't go there without the district approval. We should find out something by Monday I would think. We were "advised" to stay in the previous district as long as we could-at least 5-8 days. We held out for ten days. Friday we took all of his paperwork to the new district including his 30+ page IEP from the Barber Inst. In it, they recommended he stay there. I am crossing my fingers.

We have also been getting Michael established in the local skating rink here. He has been taking more lessons since we first arrived. He is also signed up for spring hockey. Last week he told us he does not want to figure skate anymore, he wants to be a hockey goalie. That has been his dream since he first played that position last year. He has been begging us for goalie gear ever since. So, we managed to get him some used gear and he is ecstatic. He got his new helmet in yesterday (cause honestly, a used helmet is just gross!) and now we are just waiting on a goalie cup and pants (I think....)

We just got our furniture in last week and have spent this week getting everything unpacked. We are now in a two bedroom townhouse. Fortunately for us it does have a basement-so a lot of our stuff has ended up down there as there is just no room for it all. The boys are sharing a room again-which does not seem to bother them. After all, they have been living in a 26ft trailer for quite some time now, anything else seems like a palace!

That is just about everything. It is nice to be back!

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.....

He Laughs.....

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!!

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.....

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......

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.........

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...

                                      "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......

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...

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.....

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....

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.