I Survived!!!!

I SURVIVED!!! Yesterday I agreed to watch my friends' two boys ages 7 & 4. The 7yr old (really, he will be 8 at the end of the month) is in Michael's class at school-so they have been super excited about this day all week! So, I had two 8yr olds, a 4yr old, and a 3yr old all running through the house. I thought it would be really fun for them if we went to see Shrek 3 while they were here. I loaded up the three oldest boys, and left Nick at home with Mike. It was an experience. Riding in a car with a backseat full of boys lends itself to some strange conversation. 8 yr old conversation. I heard things like "If I am half human I can do this..""Let's pretend we are playing Star Wars and you do such and such to me..". Once we got to the theater, I informed everyone of the rules and that we were to all stay together(this was more for the 4yr old) and we actually had a great time. The boys absolutely love Shrek-if you've never seen it, the first two movies are great! He does all the things little boys find hilarious. We got back from the movie and I made hot-dogs for everyone and they played video games until their mom came. Michael came crawling into the bedroom with me around 10pm and fell asleep; Nick crashed around 9:30pm, and the other two boys were picked up at 11pm. Go to Michael's Page for an update on him!

Ups and Downs

Just when I start to feel ok about things with Nick, something brings me back to our reality. I remember when Michael was three I took him to see Spiderman-he was so excited! He went to see it a number of times, and became obsessed with him as well as some other comic book heroes. I cried again today because Nick just cannot enjoy something like that. Somedays I feel sad because he cannot relate to what other three year olds are doing or saying. Yesterday we went to the park while we waited for Michael to get out of school. There were three other kids there around the same age as Nick-one was a year younger. They were worlds ahead of him-even the little one. He was looking at his mommy,pointing things out to her,even conversing with her. Then I looked at Nick. He was under the little wooden platform,playing silently with the rocks. We work so hard with Nick-just to do the smallest things. Nick works hard too. How must it be for him to have all these demands placed on him that he does not understand. Our world makes little sense to him. I liken it to when I was stationed in Japan. I could not speak the language, the culture was foreign, and that made for a hard time communicating. I was only there for two years, Nick will be there for a lifetime.

Mike was excited today. He told me that he and Nick had a "conversation" while sitting on the couch. It went something like this:

Nick: Night Night time
Mike: No, it is not night night time Nick.
Nick: Night Night time...circle.

That was his first attempt at having a "conversation" with anyone! Bless him, he is TRYING so hard!! Mike relished this little peek into the workings of Nick's mind-and we are hoping for more peeks every day.

Our sessions with him are still a little shaky at best. Today my main focus was on the PECS and getting him to understand that he can get things he wants with them. I have increased it to two pictures now and we are learning to choose between the two. I am also working on getting him to imitate actions such as clapping. I feel somtimes we are trying for the impossible-we demand things of him and his natural response is to retreat. If he does not understand he stims like crazy. It is a constant battle of trying to re-direct him and keep him focused. While trying to do the PECS at snack times he shouts in jibberish and flaps his hands almost constantly. Today,he got so stimulated with me clapping that he preferred to do his happy dance and run around the room. I had to physically make him clap his hands-and half the time I am not even sure he was paying attention. Oh well, tomorrow is another day right??

They are fixing our house!!!

Nick has sure done a number on our house in the last year. His obsession with lights has burned out MANY bulbs. Seems as if we are replacing them every 2 weeks. Our kitchen light finally gave up the good fight last week and went kaput. I had today off,so I took the old bulbs to the base Self-help store and traded them for new ones. Mike called housing maintenance yesterday to fix our storm door(which also went out for good this week) as well as patch up the two dents Nick put in the wall with his head. They came out today and spackled the dents, and ordered us a new storm door!! Our house is finally getting back in shape!! As I said earlier, I had the day off today so I decided to take both the boys to school. I wanted to talk with Nick's teachers to see how he is doing. I met his main teacher,Liz in the hallway and another teacher was walking with her. The other teacher said "Hi Nick!" and he turned around and looked at her!! Neither of us could believe it. She had a huge smile on her face after that. I asked how he was doing with speech and Liz told me that he is echoing wonderfully. He is starting to say "Set...GO!" after she says "Ready.." Liz then informed me that Nick ATE the other day in class! I asked if it was a cracker; and she said "YES!". I thought it was his regular round Ritz cracker until she told me "it was one of those dinosaur shaped ones" I nearly fell to the floor! Nick had refused ANY cracker that was not a circle or a goldfish-and now he is eating DINOSAUR shaped ones???!!! She said he knows every song they sing,and is really good with "Nesting" and stacking items(No wonder he stacks our blocks rather than matching them during our sessions-yesterday he built a tower of about 6 blocks). I am glad to hear that he finally broke down and ate SOMETHING at school-as well as his good report.

So, the repair guys came and spackled the walls-well, what does Nick do when he gets home from school? He discovers the still damp spackle and puts his fingers all in it! Mike managed to smooth it out a bit, then he sent me to the store to buy a baby gate and some more door locks. I took Nicholas with me to Wal-mart and let him walk instead of riding in the cart. He is doing so well with this, that it is no hassle taking him anywhere. The floor at Wal-mart must be interestig, because I had to pick him up off it several times. He would get on all fours and crawl down the aisles-he was looking at the wheels of the cart as I pushed it. He layed on the floor as well-I think he liked the coolness of it. He went haywire when he saw a mirror-smiling and twisting his hands in front of himself. I think I even caught him saying "hi" to his reflection in passing. I did not care what people thought, Nick was happy and having a great time. He did his little funky run(with hands flapping in excitement) as we walked out of the store and to the car. We had a marvelous time. Nick really likes the lighting in Wal-mart!

He has also started something completely new. He now sings the notes he plays on his keyboard. We wonder if he has something they call "perfect pitch" because he can copy sounds very accurately with his voice. Only time will tell I suppose.

Ramblings

Well, the PECS are going so-so. I think it is mostly my fault though. I just get impatient with how slow things are going. This is not one of those things that happen overnight-my brain knows that...but my heart does not. I think the reality is starting to sink in a little more. His quirkiness is becoming more apparent-and it is sinking in that this will be a long haul. Our sessions with him are very brief-he cannot sit still for more than a minute, and after each task I have to let him run in circles, or into the livingroom for a bit. Today we got two items accomplished before he shut down. He wants to stay in his world, and we are trying to bring him out...it makes for a unruly setting. I just have to remember to take it slow...Rome was not built in a day.

A little music

I put some more music on the site so you can listen to some tunes while you read. I did not choose ALL the songs, I just let the site pick them for me (hey, it would take me WAYYYY too long to select 45 songs!). Most of them I like though.

I finally got Nicks' PECS in the mail today. We started him off with the one for "cracker" since he seems to be eating them again. Today we got a real shocker! He led Mike by the hand and said "Come"! We could not believe our ears! Well, I think I am going to shower and then be off to bed. Good Night!

another week...

We made it through another week! We had a small family party on Tuesday to celebrate Michael's birthday. Nothing spectacular, just a small cake and some presents. Nick thoroughly enjoyed smearing the cake and smushing it through his fingers. The only time he has actually EATEN cake was on his first birthday. We are happy to report that his interest in Ritz crackers and pop tarts has not dwindled--so that is at least some solid food that is getting into him. This weekend was a busy one. Yesterday I schlepped the boys all over town to get the cake, and other supplies like chips,sodas, and Michael spent his gift card from my dad. Nick handled it all with ease-not too many "Nick moments". I actually think he rather enjoyed the little party in his own way. He stayed in the room with all three boys, even if he was just on the sidelines; it was apparent he wanted to be near them. When it was time for cake, I sat Nick in his chair so that he could at least still be part of the action. The whole time the boys were eating Nick just sat and watched them. He was trying to figure this whole social scene out and he watched intently everything they did.

Today, we went out to the grocery store and Nick started something new. He shouted "Aya!!" along with a few other vocalizations rather loudly. He has never shouted before in public, so most of his vocal oddities went unnoticed. Not today. He was sharing with everyone his own "silly talk". He does follow us rather well and does not tend to run off; you would almost say he is extremely well behaved. You might think he was completely normal. Until he runs by you waving his hands in the air, or walks on his tip toes when the patterns on the sidewalk change. Autism colors every part of his development. In some ways it is devastating-in others it is a complete gift. Nick cannot stand the sound of the vacuum cleaner, but he will put his ear right next to the speaker on his keyboard and play the notes. He plays his keyboard every single day. He is a whiz at shapes. It is like he understands the geometric patterns and he is completely at ease. Music is another thing that is very predictable-each key plays a specific note. That does not change. The shapes have a beginning and an end-it is always the same. People change constantly-and this is what is upsetting. While he is a whiz at putting together geometric puzzles, daily tasks have to be taught. We are slowly working on getting him to dress himself. Through repetition, and lots of hand over hand help, he is learning to pull up his pants. Today, he was able to follow a command-"get me your pants". He turned, saw his pants on the bed, picked them up and gave them to me. I was ecstatic. We are hopeful. He IS learning, and he is showing us that he catches on to things very quickly.

Social skills and play-doh

That is what we worked on today. When I got home from work, I sat down with Nick and Michael and we had snack time. All three of us sat at the table, and I had two types of crackers in the middle. We did a lot of hand-over-hand with Nicholas getting him to point to what cracker he wanted and prompted him to speak. After our snack time, I walked him to the kitchen and helped him to put his plate in the sink. We sang our "clean up" song while we did this. While he was eating snack we brushed up on our social skills and not stimming with the plate. With the play-doh he gets sensory input and we mushed it, and smushed it with our hands. We worked a little on imitation skills with him copying me as I mashed it with my hands and fingers. It is hard sometimes to keep him from stimming in these situations(twirling the roller,spinning the plastic cutters,gesturing with his hand in front of his face). That still pretty much dominates our sessions right now, we just re-direct him. He had a mini-meltdown when it came time to clean up. Lots of hand-over-hand direction,picking him up off the floor,intercepting attempted head banging, but with lots of patience, he came around and put things away. It is not like a normal kid when you tell them where stuff goes and they put it up, with Nick I have to physically take his hand and him over to where the item belongs and say "Put it IN". We have had good days so far. I have also learned that Nick finds it difficult to sit still through an entire meal(he is constantly moving,twisting,vocalizing) and I have had to break up his meal time. He eventually eats most of it, I just have to let him burn off some energy in the middle of it...otherwise it gets too frustrating for both of us.

Pictures

His room is complete!!

I think it looks simply wonderful!! Nick seemed to like it as well this morning. We played with play doh for about 30 min and he had enough-was not focusing at all, so I decided to end it with him helping to clean up. I had to assist him most of the way, but we did it. I ordered some PECS, a PECS notebook, some small colored blocks, and an in-home ABA program. I can't wait to get it all, and get started. Here is his new "classroom".

Out of frustration.....

At loooonnnggg waiting lists, and the very limited services offered (a grand total of 3 places relatively close to us-1 was closed down, 1 had a one yr wait list, and the third I have not called yet) we have decided to convert the small bedroom into a classroom for Nick. Friday night, Mike put the bunkbeds back together and we moved both boys into the bigger room. Nick of course was adament about NOT sleeping in that room, so we let him sleep in his old room for another night. Everything has to be in stages for Nicholas. TOday, we moved his firetruck bed into the old playroom, eventually he will progress to sleeping on he bottom bunk. It is a little cramped with the three beds, but they still have space to play. After all that was done, we took a family trip to Target and dished out $400 on shelves, bins, coat rack, and a few more toys. I have found websites to order the PECS and the PECS notebooks(I tried to make some myself, but it just did not work) as well as some ABA books and other items. I might go to Barnes and Noble to see if they have any guides on how to go about this, or just order books online. We paid off our remaining credit bills (just about $1000 total) with the income tax and we still have about $1000 left from that. Michael is helping Daddy build all the shelves. He really likes the drill!! Gives them some "male bonding" time building things.

school pictures

Here is what Nick's school pictures look like this year. It costs $40 for all 6 sheets, so we might just spring for that deal. The week is going good for Nicholas so far.

Nicholas movie

No wonder autism gets such a bad rep?!!!!

This article is just simply infuriating!!
http://blog.washingtonpost.com/virginia-tech-shootings/2007/04/dormmate_cho_was_distant_seeme.html

Now it is all over the press that they *think* Cho was autistic and that is what led him to kill 32 people plus himself. People now think anyone who seems "distant","uncaring", etc. is autistic. I am sorry, but while I know auties are known to have tantrums, and their frustration can lead to some violent behavior, this in no way means that everyone who is violent is autistic. I am sorry, but there are more severe conditions that result in violence other than autism. Most of all, autism is NOT a mental illness!!! It is a NEUROLOGICAL disorder. What is even more frightening is that now, when we mention Nick has autism, people will only think of this psycho who was very disturbed mentally, and not see what a wonderful little boy Nick is. They will automatically think that Nick is just seething with anger, and that he should be kept away from the public because he is a danger to others. America needs to wisen up.

One amazing little boy!

We often wonder just how much is "getting through" to Nicholas since he rarely lets us know what is on his mind. This week we had some real surprises!

Mike was sitting on the couch watching tv when Nick came up to him and goes "Doing?" Mike was shocked and actually answered with "I am sitting on the couch. WHat are you doing?" Nick then went into the kitchen where he started playing with his Leap Frog Fridge Magnets where we got even more shocks! Nick was saying "Yeyow"(Yellow), and "Geen"(Green). Those were the colors of the letters he was playing with!!! He proceeded to put the little letter magnets in the toy and said some of them like "N", and "W" upon recognition. He also noticed that the "M" could be a "W" when turned upside down. I know this because he studied it, said "Doudle EEww" (Double u)and then turned the M the right way.

I believe his receptive language is also getting better as he seems to be understanding us when we explain things to him. It is just amazing to be a witness to these little daily miracles. He has been very cuddly lately, and has seemed to develop a slight sense of humor-he cracks up when he farts and we make a silly face.

Today when I met him at the bus after school, he looked at me, smiled, and said "Hi!" A few minutes later I asked for a hug, and he put his little head on my shoulder and wrapped his little arm around my neck. We hugged for about a minute or so, and then went back to playing. I cannot express how much these little miracles give me such joy. I am just tearing up with happiness right now!!

JINX!!!

Apparently I jinxed myself when I posted yesterday about Nick eating Ritz crackers! I gave him some today after he ate his lunch, and all he did was line them up on the table. They went nowhere near his mouth. Oh Well. We will keep at it.

Our big outing today was to get Michael's hair cut, and if possible, Nick's as well. I thought it was a hopeless cause the second we entered the salon. There were tons of people waiting in line, and more waiting in chairs. We had barely set foot in the building before Nick was stepping all over the other people to get to a light switch. He managed to step on one little girls foot, and I apologized profusely at her. Nick it seemed was on a rampage. I tried to get him diverted to another portion of the small room. Over on the other side he went right for an electrical outlet and ended up knocking over some of the haircare products(he is not graceful in movement by any means!). I ended up having to hold is hand very firmly with him slightly protesting. I was seriously thinking maybe this was not such a good idea, and was about ready to confine him to a stroller-only I did not think it would have helped matters much. The good Lord must have had some pity,because we were able to go right in. I was cautiously optimistic when I plopped Nick down in the chair to get his hair cut. Needless to say, he sat VERY still, and I was very impressed with his hairdresser. Nick did not make one single peep-I don't think he even moved the whole time. I was silently jumping for joy. This was a first. I made sure they did not have those vacuum attachments that torment him so much-he was a perfect little angel. Then it was time for Michael to get his hair done. Nick spent the time amused by the reflection of his hand in the metal parts of the chair, and voila, we were done! Score!!

Full of surprises!

I took a few days off from the computer. I just needed a bit of a break. I was spending almost every spare moment of my time researching/talking/chatting about autism and therapies. It can really start to run your life after a while. This week was full of surprises though.

Tuesday I met with our new case manager to discuss Nicholas. She asked a few generic questions(ones that we have been asked by everyone who evals him-you can imagine how many times that has been). As far as therapies goes, I was basically told to just look in the phone book and find some that would take our insurance. UGH! So I looked. I could not find anything for behavioral therapy. I have scoured over the internet to find people...I managed to find one Occupational therapist in our area and I plan on calling her on Monday. They have programs for autism-they are just located in places like Seattle,Bremerton, and Spokane has tons of them. Since gas has gone over $3 a gallon, we are not looking to be driving that far. This is where "autism" can take over your life. Finding any therapy that boasts some success.

One of Nick's obsessions that we could live without is opening/closing windows. He will find any way he can to get to one. He is also obsessed with the screen that is on the other side of the window. He was in the playroom on Wed evening playing with the window and screen, and he managed to rip the bottom of the screen out. I pulled into the driveway to find Nick halfway out the window. I yelled "Nick NO!" and he pulled himself up and into the house. He works his way past the locks, and the rubber stopper is no match when he really gets to going.

He ate a Ritz cracker today!!!! I know this is small potatoes to most, but Nick has been on a ban from eating anything solid since the beginning of the year. Not even his beloved goldfish crackers have touched his lips for a couple of months. Today, he ate a handful of Ritz crackers-oh the joy!!

Tonight was a special night for daddy as well. Nick crawled up onto the couch and sat next to daddy. Not only did he sit with him, but he kind of curled himself into daddy's side and watched some TV. Mike was so happy-Nick had also not done this for months, and Mike was more than happy to resume this activity again. He loves it when Nick gets "comfy" on the couch and just for a few minutes seems to be at total peace with himself. He is not twirling,spinning, or doing anything out of the ordinary...he is just a boy relaxing on the couch. Tonight at bathtime, he even managed to put two words together on his very own. They were "Michael No!". He even used them correctly when Michael was trying to put a toy fish where Nick already had one. Nick wanted that fish to be the "only" fish in that spot, so he said "Michael No!" Like I said, this week was full of surprises! I just hope they keep on coming!

Easter

Viewing the loot from a safe distance.


Slowly inching towards the spread!


Seeing the world from a different view.

Cheeky boy!

Playing with my brother

Autism University

Time for a little fun!! Dealing with autism definitely requires a sense of humor, and I usually find all of Nick's little obsessions and quirks very endearing. After all, his little oddities make him who he is essentially. Some of his quirks I could live without, but some of them I would miss terribly. Here is what his yearbook is like in "Autism University"

President of the twig and straw twirling club yrs 2 & 3

Captain of the Synchronized Spinning club yrs 1,2,&3

Team Captain of the "Happy Feet" dancing team yrs 2&3

elected as the Headbangers Ball King yr 3

President of "Just say NO to tablefood!" yrs 1-3

Team Captain of the OCD Light-switch club(can flick a mean switch in seconds!!)

Honorary Cafeteria chef-can make anything look,taste,and smell like Pink Dora Yogurt!

Record holder of most times repeating a single word: yr 3

Nick's new "hobby"

Happy Easter!!

Hiding!

Nick did fairly well today at the game! He even managed to clap and cheer for Michael after everyone else did! One mom claimed that was the first time she had heard Nick say Michael's name! I told Michael that his brother was cheering for him and he said "I know! I heard him!". AHHHH,a few seconds of normalcy. The rest of the time he was spinning himself,and hiding behind the barriers. Other times he would wave his hand in front of his face,laugh,and blurt out some verbal expression that no one understood. He was a very cuddly bugger today as well. He went up to nearly everyone and "hugged" their legs. He spent a few minutes examining the zipper on one parents jacket,amazed by its long tail hanging from the zipper head. I forget how many times we were asked if we saw Oprah on Thursday. Yes we did. I just wish she had other parents on there rather than the same people who had been on Larry King a couple weeks before. Seeing older kids who still stim like Nick does, just brings it home that Nick might not ever "fit in". It is hard when we go out-he does not vocalize like a normal three year old would. He has his little vocal stims-sometimes he repeats a word over and over again, like "Aya". Sometimes he shouts in jibberish. He ALWAYS takes his shoes off, and he has a new thing now where he places one hand on top of the other and screeches with delight. Mike is getting better at difusing his meltdowns. When Nick starts getting crazy, he offers up a sticker or two. This might be the reason I have found address stickers all over the house lately. Last night though, we were not fast enough, and before we knew it, Nick ran head first into a wall. Nothing like seeing your 3yr old bounce his own head off a wall. It is not something I care to see everyday. Normally, he would gently bang it, now it is all or nothing it seems. And yes, he has bruises now to prove it. I have our new case manager coming out on Tuesday to do another evaluation on him. Hopefully she can offer up some more programs for him. I have a few in mind of my own, such as the Auditory Integration Therapy that I have read about. But,we will see if she has anything she can get us into. I called UW last week, and got an e-mail back from them saying it could be months before Nick gets in. I can't wait months. Anyway, since Nick does not eat any candy(or any other table food for that matter) here is his Easter loot this year:

I am going to give the Fridge phonics a try. And I also bought him some flash cards with animals and textures on them.
Have a great Easter everyone!