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!!

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?

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!)

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.

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 :)

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.

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!

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!

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.

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....

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.

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.

The Week in Pictures

This was one busy week. It started on Sunday with something that was totally fun.

Michael's hockey team got to scrimmage at the ShoWare center in Kent during the Thunderbirds game. I admit, we were feeling a little bit of trepidation as it is a big arena with lots of new sounds/smells for Nick. Not to mention the crowds. We were wondering what we could have gotten ourselves into as we drove to the arena. Parents of autistic kids everywhere know there are two options for this: A) He will love it B) He will scream bloody murder and it will be another event in which one of us will spend in the car with the boy. It turned out that he ended up loving the two zambonis they had. He tolerated the noise. There were a couple of close calls where he latched on to my jacket and buried his head when our team scored and the bull horn sounded; but it was a relatively scream free event and he even SMILED! Not at the camera of course.


That was the only fun thing that happened this week. I had Monday off due to the holiday, which was nice. It was relaxing in order to prepare for this:

On Tuesday Nick and I spent three hours in the hospital getting the necessary paperwork and procedures accomplished for his surgery on Wed. I think we spent more time waiting then actually doing anything. We talked with the Dr and went over everything we needed to do on Wed. Nick was quiet with no major meltdowns. Once that was over, I had to rush Nick back home and get to a meeting at work. I called that afternoon and got our show time to the hospital the next morning. We had to be there by 6:30 AM! Yikes that is early! Michael got to come with us, since he really could not stay home by himself. Since he only had a half day of school on Wed I did not feel that bad.

This was my little man sitting in the O.R. waiting room at 7am. I tried to prepare him as much as I could the night before, but not really sure of what would happen other than "Tomorrow we will have your owie fixed", it was really kind of difficult to be very specific. I explained it to him as best I could, and he was rather good.
His owie BTW was an inguinal hernia. Not exactly sure how he got it, but it was getting bigger and bigger so we thought it was best to have it fixed. Surgery was two hours long, and we spent about another hour in the recovery room. They gave him some sort of spinal block to help with pain after the surgery, only problem was, it rendered him virtually unable to walk. The poor kiddo came out of anasthesia unable to use his legs. He was MAD! I held him in my lap (yep, my BABY LET ME HOLD HIM!) and did my best to comfort him. He was super cuddly and I was enjoying every minute of holding him on my lap like I did when he was a baby. Michael was the best big brother a kid could ask for. He was feeling very bad for Nick and was very concerned about him. When we got home Nick still could not walk, so we each took turns holding him up as he moved his legs where he wanted to go. The kid was not about to sit in one place very long! His recovery has been slow but steady. It took him until the next morning to pee, and he is still pretty swollen. He began to walk again Wed evening, and has been getting pain meds off and on when he seems to be hurting. He has been very testy and short fused/stimmy the last few days. I am sure that is a result from everything that has gone on this week. I am hoping next week will be better and he will be closer to his old self. Really missing the old cheery Nicholas.

HAPPPPIIIIEEEE TALKIN'

I was getting Nick ready for bed last night and we started to play around. He was being super cute so it was pretty hard to resist. Anyway, he got to doing one of his vocal stims (basically it sounded like he was barking like a dog..LOL) and I started to copy him. We both started laughing and Nick was adding more and more sounds to his repertoir. Of which I was not so talented in repeating. Suddenly Nick burst out laughing, spoke some jibberish, and then shouted "HAPPIIIEEE TALKIN!" Yes, Nick, we were Happy Talking together :)

Back to Normal

The last week or so of Christmas break was rough. For us and for Nick. He was completely off his schedule and was a total wreck. Nick used to not be affected by a schedule change so much when he was first diagnosed. Now, if there is a schedule change he gets very anxious/nervous and is prone to meltdowns. Which is what Christmas break does to him. Even though his tutors continued to work with him-they were off schedule as well. We DID get to do some fun things in the first week, but with the overstimulation of Christmas day, the next week of break was just a horrible mess of meltdowns. I was very close to calling his doctor to increase his medication as I thought it's effectiveness had worn off and I was not willing to go through months of madness.

On Monday it was time for everyone to go back to school. I don't think anyone appreciated this more than us and Nick! After a couple of days Nick was back to being his normal cheeky self. Instead of screaming at his therapists he was using words. Toys were not being hurled in their direction(which I am sure they appreciated!) My picture frames are also getting a much needed break. They barely survived the holiday and have the scars to prove it. All week Nick has been a total rock star in his sessions! Boy am I glad for that. Things were getting downright hairy here for a while. Nick got several stern talking to's, and spent quite a bit of time in his room going "goodnight", a few objects were thrown, and two more picture frames were broken. All in the name of a Holiday Break. The crowning moment this last week was when Nick came and sat down next to daddy and watched TV with him. It was just a moment in time, but a moment that was very treasured.

Merry Christmas!!!

Somedays you just need to play a little 'hookie'! The boys have been out of school since last Friday, but Nick has had therapy for the last few days. It is a juggle that I still find myself torn between. He can always use therapy, and he has made a lot of progess with it being 5 days a week now. So, during breaks such as this from school, I am always eager to sign him up for more hours to fill in the void. It helps control his anxiety during the break because we still have a schedule. But, somedays he just needs to be a kid. Today was one of those days. He had been going through 'zamboni withdrawals' for the last few weeks.With his busy therapy schedule, he is not able to come to hockey practice during the week to see the zamboni clean the ice. Today I called his afternoon therapist and told her we would like to take a day off. Nick needed a day just to be a kid. And it was hard to turn him down since our 'conversation' this morning revolved around the zamboni...
We went skating today around 2pm and both kiddos now fly across the ice. We all had a great time. Nick had a huge smile on his face. It was so worth the funk he is in right now for that hour! Yes, we are dealing with the fallout from all the upheaval today. Anytime we change his schedule, no matter how small, he gets a little funky. He is in his room now hanging out and calming himself down. It will be a low key night. We are getting ready to eat dinner, then it is bath time, and then bed time for Nick. After he is in bed, I am going to bake some holiday cookies with Michael. Nick does not get much out of baking yet, so it will be just me and Michael. Gives us something to do together. Tomorrow our big plans are to go see the holiday lights at the park and wait for Santa. Maybe watch some more holiday movies, and of course wait for the fire engines to come through the neighborhood and pass out candy. Hope everyone has a Merry Christmas!