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!!

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!

The Great Flood.....

And no, I am not talking about the current weather situation here in the NW. Let me explain what happened on Saturday.

*I get up at 7am. See Michael on the computer. I ask Michael if Nick is up yet. He says no.

* Nick gets up as soon as he hears my voice and wanders into the dining room. I change him, give him milk, and make his regular breakfast of two waffles. He eats.

* Hubby gets up and tells me I can go back to sleep if I want...cause he's got this. I lie in the living room and fall asleep. Big mistake. Through my slumber I vaguely remember Nick coming to me for various things. I tell him "go ask Daddy". I fall back asleep. Mike is on the computer. It has been a quiet morning.

* I wake up. It is too quiet. I go on a search for Nicholas and find him in his room. He tells me "goodnight". I leave. Mike goes in a few minutes later. Nick is somewhere else now. We look for him in our room. No Nick...but Mike yells for me to come there immediately. I am fearing the worst at this point.

* Nick had been in our bathroom. Obviously this happened some time ago--judging from the amount of water that was pouring out of the sink and on to the floor. Everything was soaked! Including the carpet in our hallway! We used every single towel we had available, mopped up the water, and soaked up the water in the hallway.....soak, wring, dry towels. Lather, rinse, repeat. All weekend long. No wonder Nick was hiding out in his brother's room!!

-It's OFFICIAL: BOTH of our kids have completely flooded the bathroom now. Whew! That monkey is now off my back.LOL!

A Look into Nick's World...and Ours...

There is really no other way to describe exactly how Nick's autism is. You just have to see it for yourself. This is what happens daily in our house. Thanks to Risperidone, you won't see the OTHER side of Nick that was known to happen a few months ago. This is the more 'controllable' Nick...although I can use that term a little LOOSELY, because his behaviors are not really screaming 'controllable'. We have therapists at our house five-six days a week working with him. For three hours after school. Bascially, he goes to six hours of school-gets home at 3pm. At 3:30 he starts working with either Tracy, Scott, or Stephanie...depending on the day. He also gets Hippotherapy, Speech therapy, and Occupational therapy. This is the reality of his disability. People think he is a normal six year old because of his outward appearance. Then he starts to do some of his vocal stims in public. Or he runs away to slam doors, opens gas tanks on cars, hits things..etc. Then they assume it is just a "discipline problem" and that they know how to "fix" it. They stare. This is autism. Please, if you see a kid like this in a store or another place, be nice. Be understanding. Do NOT presume that the kid you see is "normal". This is a side of autism that is not shown on any talk show, and does not come with those success stories about 'recovery'.

Thanksgiving......

Hope you all had a nice turkey day! We had a very relaxing one. My dad came up to visit for a few days and the boys loved it. Sunday it started snowing and that continued through Monday night. Monday I left to pick up my dad around noon and it was not that bad out. By the time we got back to the house around 2pm, it was snowing again and the wind had started blowing. I went back to work only to discover that everyone had been let go early-due to weather. That evening we had the earliest snow storm that I remember since moving here. The winds were blowing like crazy and the snow was coming down pretty fast. Of course I decided to take Dad and Michael out to get pizza right in the thick of things. Nick was still working with his tutors at that time, so Mike opted to stay home. On the way to pizza hut we saw numerous cars spin out, and were kind of laughing at their expense. One of them was trying to pull an empty trailer up the overpass....not a good idea. Anyway, we made it safely and ate our pizza in the comfort of our dining room. School was closed the rest of the week, so grandpa got to spend ample time hanging out with his little men.
Which also means that he got to experience life with Nick.

On Tuesday we were all set to go to hockey practice with Michael, but it turned out the rink was closed. We did not find out until we had driven to the rink-and Nick was not happy that we had to turn around. He cried because we did not go skating-then he cried as we pulled away from the house to go eat. We instead went to IHOP where we were pretty much the only customers there. Nothing like a plate full of pancakes to win over this brood..LOL!

Wednesday all the boys went shopping for some clothes for grandpa. He had only come with shorts and short sleeved shirts-and it was 32f outside. They also picked up a ham to cook for the big day.

Thursday we lounged around most of the day and watched movies. Holiday movies like Planes,Trains, and Automobiles, and Christmas Vacation. Nothing like a good comedy enjoyed by the entire family. Thursday afternoon we started the ham and three hours later we were enjoying some good food as well as good company.

Friday morning I got up to take Dad to the airport. The snow was all gone by this point and it was raining. It was back to normal. Nick had his chiropractor appt, but other than that, we had nothing planned. It was a pretty laid back week. Tomorrow starts the daily grind again.

School Closed!

I was so looking forward to a day off with no children! Hubby and I were making plans to go and see a movie...ANY movie. Just one without kids. Well, that plan was shot to hell at 5am this morning when the school called and said "Due to numerous power outages around the area, there will be NO SCHOOL TODAY." Ok, Ok, so it was a little windy out last night and our power did go out for a bit. But seriously?? I find it humorous that *I* am expected to make it to work after last night, but teachers can't?? I have not seen anywhere any reports on my two lovely boys' schools being damaged, and our power was back on before 5am. I am willing to bet their schools fared just fine and they could have gone. Instead, I got to deal with two boys getting on each others' nerves ALL DAY LONG, and taking Little Mister to the grocery store with me...which was jam packed I might add. Ugh! That was another thing I had not planned on doing...see where this day went?? Is this a sign of the next three months to come?? I am going to need a bigger tub of ice cream.

Days are Short, and Nights are Long....

Well, after my last post things got pretty hectic and busy at work. We were basically putting in 18-19 hour days-with little rest in between. We also worked 10 days straight. I missed so much during those 10 days...hockey practices, skating practices, chiropractor visits, and tutor sessions. I also missed a hockey game and just the general goings on around here. Let me see if I can catch you all up. Thursday everyone was off school and work for Veterans Day. It was soooo nice not to have to get up and rush everywhere. We all just kind of lounged around the house until it was time for Nick's therapist to come by. Mike took Michael to hockey practice at 6pm while I stayed home to cook dinner, and wait for Nick to be done with therapy.

Friday morning it was back to school for Michael and we had to be at hippotherapy at 10 am...which meant I had to leave at nine.

I still think this is one of the best therapies we have done. It is so cool to just watch him ride the horse. He does not stim the entire time, and absolutely loves it! That afternoon we also had his chiropractor visit, and I noticed that Nick sat completely still the entire adjustment. That is something he has never done...even the Dr was wowed. Friday night we did much of the same-relaxed around the house. Saturday we had another visit from Nick's therapist. She stayed for three hours and worked with Nick. I admit, it is sometimes nice to have them here. They can keep him entertained and engaged which gives me time to clean the house a bit. After that, it was time to head out to Michael's hockey game. The Spitfires WON! 3-1. It would have been 4-1 if they had counted the goal Michael made in the first three minutes!! Grrrr! Today we were all completely lazy all day...and it was grand! With that, I leave you all (esp. family back east) with a photo timeline of just how soon the sun sets here now. This is not even what it will be come late December. Then it will be even earlier.


3:15pm

4:30pm

4:45pm

5pm

The view by 5:15pm.

And on the flip side we have summers...where the sun does not set until after 9pm and greets us around 4am!

Dr. Appointment...

Well they say it is either a hernia or hydrocele. More likely a hernia. We have an ultrasound scheduled for the 15th, then a surgery consultation after that. Poor kiddo. He was most excellent today for the doc too!!

Weekend Wrap up...

What a fun weekend we had!! Saturday evening we got the boys dressed up in their costumes and went to the Halloween festivities at the ice rink. Nick was a clown and Michael was like an evil Jester. I had bought some makeup because Nick will not wear a mask, but was kind of nervous of how it would all go down. I imagined something out of the Exorcist. Turned out Nick only moderately detested the makeup-but instead of a clown, he ended up more or less looking like the smeared face of The Joker in the movie "The Dark Knight". Oh. Well. With Nick you just gotta pick your meltdowns. I mean the kid touches his face every minute of the day WITHOUT makeup-with the stuff is even worse.

Put skates on both of them and we got in a few laps before we heard the announcement'Will everyone who is entering the costume contest please come to the center of the rink'. Michael was a given-of course he will enter the contest. With Nick I debated with myself. I don't know why I still do this. He is a KID afterall! You might be thinking why would I even debate such a thing. Well Nick's autism prevents him from eating most of the candy, he gets very antsy around crowds, does not like to wait, and he cannot communicate a whole lot. My mind gets to thinking things like "Will he even enjoy this? Will he realize what is going on? Will he scream because it is taking too long?" Thank goodness I don't always think so 'logically' and end up throwing caution to the wind and saying 'Why Not?' This time I did just that. So, Nick and I stood in center ice with all of the other hopeful contestants. There was Michael the Jester, Iron Man, Spiderman, Dracula, 50's girl, cheerleader, a zombie, a rapper, and Nick the clown. Michael won the first award: "Scariest kid costume". A few other awards were given out "Most Original", "Best Adult Costume", etc. Then came "The award for Best Overall Costume goes to....The Clown"! I was shocked! I kept telling Nick "You WON Nick!" "You WON!" as we skated to pick up his prize. Mike informed me that as soon as the staff saw Nick they wanted to make sure he got something. That is what we love about the rink. They accept Nick completely. All his figure skaters congratulated him and told him how cute he was. They simply accept him. I don't know how much of all this gets in his head, but I hope some makes it in. So I give up on all the "What If's" and now say "Why Not??". Just go for it.

Last night was Halloween, and once again we were proven wrong by Nick. Michael had plans to go out with one of his friends-so it was just Nick, Mike, and Me. Going by previous years Nick would maybe make it down the block and back. Not this year! We dressed him up, gave him his treat bag (which he held the ENTIRE time on his own!) and headed out. Nick was into this. Although he needed some prompting to say "Trick or Treat" and held back from going INTO the houses, he did great! By the end of the night, he would run up to any house with the lights on and an open door...LOL!

In other news, I had to make an appointment for Nick today to get his testicles looked at. They had noticed years ago when he was dx'ed with autism that one of his testicles was larger than the other. This weekend however, it seemed very large. I know it may be nothing and it just might be an anomaly he was born with, but I know I will feel better getting it checked out. Michael had a hernia when he was little that presented itself in the same fashion. It was a simple repair, but still. I have a feeling it is a hernia though. I hope to be proven wrong on Wednesday.

Pictures from Hippotherapy

The Season of Change....

It has been a busy month in our neck of the woods. Hockey has started in full swing...so we are at the rink Tues, Wed, Thurs, Sat, and Sunday! We have also found Nick a new tutor who will be coming on Monday evenings, and Nick has hippotherapy and his chiropractor visits on Fridays. One of Nick's other tutors is also back to help us out and that schedule varies. Last weekend she came for about three hours each day, and she has come three days this week. It is nice to have the extra help..not going to lie. While Nick is being worked with I can actually get some stuff done around the house.

Last Friday was a big break through-Nick suddenly started hopping on one foot; albeit he was holding on to the gate, but he was still hopping! And he was even changing feet! I can't help but think that the sessions with the horse have helped in that area; along with possibly all the skating.

Nick's new tutor is a perfect match for him. We were interviewing him on Monday night with his BCBA and he was just so excited to hear what all Nick was doing! Big plus for ME is that he looks like Jake Gylenhaal...oh yes he does. I can handle that coming to my house every Monday for like three hours working with one of the coolest boys on the planet :) Just sayin'...

Michael brought home all A's and B's on his report card!! Love love love that boy of mine!! I also believe we have switched gears as far as girls are concerned. Ugh. Did not take them long to notice Michael. He came to us a few days ago asking how to tell if someone likes you. This has been heresay for a couple weeks now. Michael found out through the grapevine that this little girl likes him. And I think he also kinda likes her. We have just entered the whole next phase of this journey called Parenthood. How did this happen so fast?? I remember bringing that little 8 pound bundle home from the hospital like it was yesterday. Through years when he was not growing, not eating, and hearing for the first time he had GHD. We are six years out from hearing the final diagnosis, and we could not be prouder of him!

My NICK is BAAACK!!!

Yes Nick, you were still here; but you had a cold and you always seem to regress a little bit during your illnesses, so your mommy and daddy missed your little quips about the zamboni and the microwave.Simply because they were not there. Speech is much more limited when you are sick. I sure was glad when you started them up again today in full force. Mommy promises to take you to see the zamboni tomorrow-I felt bad today because you only asked for it about 100 times in the hour I was home. Sorry baby boy, we had to go to the chiropractor. I am glad you're back Nick-we sure did miss you :)

The Sweetest Thing.....

This amazing thing took place on Friday morning. Nick stayed home from school that day due to really because we did not know how he would take to this. It has made some kids dizzy, nauseous, etc. Plus, we were not sure how long it would take to get through everything such as paperwork, evals, etc. But, it was the most amazing therapy we have thought to try. And we saw results immediately. Even though this was a new experience for Nick, he was completely calm while riding. No stimming. At All. He was looking at people as they talked to him and doing what they asked. While riding the horse. It was beautiful to witness. He did it so naturally...not robotic. He was petting the horse, brushing him, telling him to go and stop, and before we left, he gave Yukon two big hugs and said Goodbye. The entire ride home he was calm and did not stim either. We are currently working with our insurance company and will provide them with progress reports to see if we can start getting this type of therapy covered. It was amazing. Enjoy the video. This type of therapy is called Hippotherapy. "Hippo" is the greek word for Horse. I will go more in depth later about its' uses for special needs kids and how it helps the vestibular system; but until then, just enjoy the video.