Saturday, December 24, 2011

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...

Friday, December 23, 2011

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!

Tuesday, December 20, 2011

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.....

Sunday, December 04, 2011

He Laughs.....

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

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

Saturday, December 03, 2011

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.

Sunday, November 27, 2011

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!

Saturday, November 12, 2011

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

Sunday, October 30, 2011

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.

Friday, October 28, 2011

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!

Wednesday, October 26, 2011

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!

Saturday, October 22, 2011

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.

Sunday, October 09, 2011

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.

Saturday, October 01, 2011

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

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.

Sunday, September 18, 2011

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

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 fineOKAY. 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.

Tuesday, September 06, 2011

I Love This Song......



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.

Sunday, September 04, 2011

Goodbye Summer....

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.....

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.

Monday, August 29, 2011

One More Week......

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.

Sunday, August 21, 2011

What's UP Doc??


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.

Friday, August 12, 2011

From Bad to Worse......

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.

Monday, August 01, 2011

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

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.

Tuesday, July 26, 2011

EEG

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.

Thursday, July 14, 2011

Uniquely Autism



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.

Sunday, July 10, 2011

A Very OFF Day......

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.

Friday, July 08, 2011

Nick at bed time.....

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!!

Wednesday, July 06, 2011

Just Say NO!

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.

Sunday, July 03, 2011

Christmas in July!!

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!!

Sunday, June 19, 2011

At a Crossroad of Some Sort

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?

Tuesday, May 31, 2011

Welcome to MY World.....

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!)

Monday, May 30, 2011

Dare To Complain.....

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.

Friday, May 27, 2011

News of the Day......



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 :)

Thursday, May 12, 2011

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

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.
videoWe 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.
videoAnd 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.

Saturday, April 16, 2011

Update!!

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!