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.
We have also been going through worsening behavior. He has been very unstable emotionally since March. He completely loses control at the drop of a hat, and we had numerous calls from his school. His poor legs and feet were a mess. In the process of a meltdown, he would dig his toes/hand into the top of his foot, and scratch up his legs. His teacher would call saying she could not handle him, and sent him to the health room. Which he would proceed to bite himself and destroy the room. He hated the health room, and that caused even more disruptive behavior due to being a change in his schedule. He became extremely rigid in his routines and would meltdown at the slightest change. This is what I mean by meltdown. This is not anything like a typical tantrum.
And this would happen anywhere. He had a meltdown on Mother's Day simply because I wanted to take him for a walk. He kicked, hit, banged his head, screamed bloody murder within 2 minutes of being outside. They have been steadily increasing since March. This is why we have increased his medication by .25mg. He is now on Day 3 of the increase and we have seen a drastic change for the better. Anyway, just wanted to let everyone know that we have not fallen off the face of the earth, and we are still here. Hopefully things will be back to normal very soon. I just hate having to give my 7yr old an anti-psychotic so he can actually enjoy life like every little boy should.

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!

Sunday, March 27, 2011

Nick is BACK!!

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

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

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

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

Saturday, March 12, 2011

How I Sometimes HATE Autism......

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

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

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

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

Monday, February 21, 2011

A Simple Sandwich...

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

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



Saturday, February 19, 2011

February.......

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

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

Tuesday, February 01, 2011

Goodnight Mommy

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

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