Weekend Wrap up...

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

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

Weekend Here We Come......

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

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

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

CBS News video on the Ipad...

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

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

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

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

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

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

The Crud....

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

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

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!!

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.

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!!