Long Overdue Update

William is using his words consistently now, albeit still with great difficulty. We finally got him in front of a psychiatrist specializing in children with autism. Given Will's particular set of behaviors we agreed that a sedative (in this case Tenex) would likely be of the most benefit to him. After 2 weeks on it he had improved in some areas, but had become unacceptably emotional and withdrawn.

The next appointment had him on Adderall. We were warned with this transition that he might become more emotional, however, as he adjusted to the medication he became VIOLENTLY emotional. It became more and more difficult to get him to do the simple things that he hadn't really had any problem with before.. like getting ready for school. He also lost weight over the 2 week period, and this is a child that, due to his picky eating, didn't have much weight he could afford to lose in the first place.

He finally got to the point on Friday where we just could not get him to cooperate and he went without the medication. Friday was a "difficult" day for him at school, according to the report in his communication log. Saturday was worse and he refused to eat anything in the morning so he didn't get his dose that day either. His violent outbursts were downright scary. However.. as the day wore on he ate and calmed down. He spoke his requests wonderfully. He played, calmly, with his brother and sister. He did not hyper-focus on playing his complex computer games. He was likely the most "normal" I've ever known him to be.

The human brain is still a mystery. The experts have determined that the part of the brain that is responsible for controlling fever is also associated with autism behaviors. This was virtually unknown when I began writing this journal three years ago, despite countless care givers (including myself) having noted a correlation between fever and autism behaviors. As a sidebar, I'm really disappointed that there isn't more out there on this connection. The best I could find was this recent article, but it's just a rehash of what was being "announced" almost two years ago in April of 2009. I hope they're working on it.. because these two medications don't look like they're going to help my little boy one bit.

However, the processes his brain had to go through in adjusting to not only one but two rather powerful medications seems to have had a long term effect. He IS more stable. He IS more talkative. He is focusing well on his tasks. But not because of him being ON the medications. He seems to have experienced some perspectives in that wild roller coaster ride that have helped him now that he's OFF the medications. (Please.. it would be totally inappropriate for you to consider taking your child off of medications that are helping him/her without talking to your child's doctor first.)

Only time will tell if these changes prove to be lasting.. but for now.. he's a happy and content little boy who's eating everything in sight. =)

The Dam Washed Away

Now that William has figured out how to make the words come out, there is just no stopping him! Without a doubt, every time I ask him what he needs he will answer me with his words! How amazing!

Use Your Words

With the arrival of warmer spring weather we're faced with the same issues we have every summer. Whereas the cold weather makes William want to do nothing but stay indoors where it's warm, the warm weather makes him want to do nothing but stay outdoors where it's lovely. I can't blame him, I rather enjoy it too. But life being what it is it's just not possible for me to spend from 4:00 to 9:00 outside watching him. I have things I need to tend to in the house. And this evening when the time came for him to come inside and have dinner he protested like he usually does.. with screaming. I got him fed and plenty to drink. I got him changed for bed and although the screaming had diminished a bit he was still obviously upset. No amount of asking what he wanted would result in a response other than screaming. Dad mentioned that he had run into a similar situation recently and had asked him to "use his words" to tell him what he wanted. William answered that he wanted the bike inside. It had been left out on the porch and he wanted it back in the house. Such an easy thing to solve.. and yet such a hard thing for him to convey. So with that suggestion I went to William tonight and asked him to use his words to tell me what he wanted. He thought for a moment and very quietly answered. He said it so quietly, so tentatively, that I couldn't quite make it out. It wasn't "bike inside".. it was short.. only one syllable. I asked him to tell me again and strained to listen. I shushed his little brother so I might have a chance at catching it.. I begged him to say it AGAIN. He did. The words he said were shocking. He said.. "I want love please." I cried as I held him as he drifted off to sleep.

Time flies!

Wow.. two months since I posted! I have whole chapters to write! Since my last posting we've moved across the country and found a fabulous new life waiting for our family. William is settling into his new school very well.. the shake up may have thwarted advancement.. but it was only temporary! He is verbalizing requests and working so hard on helping us to understand what his needs and wants are. We are all so excited for the progress he is making. I can't even begin to imagine what the near future holds. Stay tuned!

End of summer craziness

Will is beside himself with anticipation that the start to the school year for him is very near. He's not too happy right now though as his big sister is already getting to ride the bus and participate in all the amazing things that go on there. You see.. the preschool system here starts later.. and it's been hard for him to accept. That coupled with the cooler temperatures and last summer visits from friends he doesn't usually get to see have him antsy.. and me too.

I'm excited for him and all he will learn this upcoming year. Big changes at the school too.. he'll be back with one of the teachers that were in the group that were the first to introduce him to the structure of school.. so there's that familiarity to guide him. But for now he's certainly had enough of this summer loafing.. and it's high time to get back into his routines.

"Who is that?"

"It's William!" was his response when he saw himself in a picture just a few moments ago. Wow.

Test..

Me: "Who is that?"
Will: "It's Mommy."

Wow.

Another test..

Me: "Who is that?"
Will: "It's Sara."

Four years, 10 months, and 19 days to answer a W question. Written words cannot convey the enthusiasm and praise these responses produced. Huge progress this summer. I can't wait to see how he progresses over the upcoming school year.

I see...

The other day Will pulled my glasses off my face and put them on his own. He squinted as he tried to make sense of the altered images now focusing on his own retinas. I couldn't help but wonder if they were helping him. We've already learned his big sister has some visual deficiencies.. so logic would dictate William certainly might as well. But then I got to thinking about how on earth could we ever determine which prescription would be the best ones to correct his vision. It wouldn't be possible to get him to respond to the typical barrage of questions the optometrist would throw at him.. so how indeed?

It occurred to me that he could do it all on his own. He's so capable in so many ways other than verbal communication and it doesn't take him long to pick up on the idea behind a new task. I thought perhaps we could just put him in front of a table with various lenses on it and he'd try them all out, selecting the proper ones.. then properly use the provided tools to assemble them into the frame.. put them on and then walk out the door as if nothing even remotely unusual had just transpired.

Now to find an optometrist willing to give a four year old his tray of lenses to play with.. hmmmm.......

Kiss me....

In his usual fashion, Will came up to me today and shoved against my hip. When I turned to ask him what I could do for him he pulled me down and said "kiss me". So I did. Big smooches right on the cheek. With that he was content and moved on to his next planned activity. Yay for kisses!

Who Let The Dogs Out?

I've never seen Will laugh so hard. It's a good thing he wasn't drinking milk at the time because he would surely have had it coming out of his nose. The kids have been watching Rugrats In Paris.. silly movie but the six year old seems to like it.. and there is tolerance on the part of the other two.. so it gets played at least once a day for the last week, it would seem. Within the movie there are several high energy songs.. somebody obviously spent a considerable effort assembling the soundtrack for this little kids film, and this is a major motivating factor in me putting the movie on. One of the songs is Baha Men's Who Let The Dogs Out. On the DVD they included the video for the song as an extra. So there's been exposure to this song over the last week. No harm done.

Enter youtube. Tonight the kids were browsing for WordGirl and Cyberchase episodes and it occurred to me that the video for Who Let The Dogs Out must be somewhere on youtube.. after all.. just about everything can be found on youtube these days. So I ran the search and sure enough a couple of options came up front and center. One of them was obviously done by someone who doesn't understand what an aspect ratio is and how to set one correctly when producing analog to digital conversions and so I moved on to the other video that was near the top that appeared to fill the screen completely. Little did I realize at the time why the time of the video was less than the other.. but the artisan who produced this video had selectively sped up the audio on select areas of the video. So, unsuspecting, we begin to watch and ignore the horrible video quality.. but the audio plays fine and on it goes. Then the chorus hits and all of a sudden "who let the dogs out" is being questioned by none other than the Chipmunks. I thought it mildly amusing but this little four year old boy laughed harder than I've ever seen him laugh at anything before. We just had to run it a few more times.. but it's easily been an hour since the last play and he's still wandering around the house laughing out loud and giggling about the whole thing.. and singing the chorus on his own between fits of laughter. If you haven't played this for your kid you must try it. They deserve to laugh that hard too. Look for the version published by dohnut10.

The Little Things...

I understood a long time ago that my little wonder boy wasn't going to be developing along "typical" time lines. That's okay.. but it doesn't stop me from having the highest hopes for his happiness. When my little 4.75 year old dragged me to the corner this morning, globe ball in hand, and told me to stay there I was curious as to what was up. He then turned, took 3 steps away from me, turned back to face me and tossed me the ball. I then tossed the ball back to him.. and he caught it! Our little volley lasted no fewer than 10 round trips at which point our little game of catch was disrupted by his big sister. Now this might not seem like an activity worth writing about to most of you.. but to me.. who wondered if the day might ever come.. I am again astounded.

A New Interest

A couple of years ago we got this great little log cabin building set as a gift for Will and, although he enjoyed immensely watching any of the rest of us put it together, he had not yet ventured into actually assembling the cabin himself. We hadn't had it down off the top shelf in quite a while and so when he pulled me to the shelf yesterday and said "log" I thought that was sufficient to reward him with the toy. We set up a spot in the middle of the living room floor where we could work with it. It's cute.. just a little cabin with one door and a window.. and after assembled he will often put various figures in there.. you know.. because they fit. I think our school bus driver from this toy has been in there a lot.. and I'm certain fireman Elmo has also had his share of incarceration play time in the camp. Occasionally various cows and a giraffe will tend watch in the yard outside..

It's really just a 3D puzzle.. and a bit more complex than the jigsaw puzzles he's been so good at doing all on his own for years now. But there is a bit of thinking ahead involved in putting it together. Regardless, he's attached himself to this old toy in a big way and is having a blast putting it together.. and then tearing it down.. and then starting all over again.

Oh.. and I've definitely noticed a reduction in his verbal stims over the last couple of days.. lots going on in that brain of his right now..

Kiss It Better, Mom..

I had my hair pulled this afternoon. Not just your ordinary hair pulling, mind you, this hair pulling had purpose! Never one to shoot down my son's behaviors without an attempt at comprehension I went along with it.. although I do believe a small "ouch" may have been uttered in protest. What followed was astounding. William directed my lips to his finger.. which he had just injured.. albeit very mildly.. and wanted Mommy to kiss it better. Yay for hair pulling!

New words..

The rain falling this morning was anything but light.. more like a deluge. And with that deluge comes a sick little boy. He crashed early last night on the sofa and when I went to move him to bed I could feel his fever. I hate to wake him up with a medicine treatment but it had to be done..

So he gets the grape stuff.. to which he didn't protest too much.. he must really have felt bad.

Somewhere along about midnight or 1am I hear him.. he's wide awake.. in a pretty good mood.. and belting out words I've never heard him say before.. and occasionally giggling. It's not the first time I've noticed a connection between pain relievers and new words.. I wonder if "they" have ever studied it..

Rain..rain..feel free to stay..

I love the rain...

As I watched my little wonder boy lay in front of the furnace vent and gaze out the window at the endless rain falling I realized he is seeing his world this morning much the same as he has since his life began. He was peaceful, still waking up, and the dancing drops as the unbroken light rain gathered forces and dripped off the rooftop must have captured his attention completely, much as I recall being mesmerized by the rain as a child. The brightly lit droplets joining together on the end of the branch hanging just outside the glass were hypnotic.. and the option of refocusing the eyes to the waiting puddle below, infinite splashes contributing to its size, made for more visual stimulation than any small child could ever hope for first thing in the morning.

As I gazed upon my wonder boy gazing upon the simple force of nature we call rain I realized that it is my perception of the world that has shifted, albeit ever so slightly. Yesterday I had an uncommon opportunity to meet with Will's teacher. She and I had talked about how I would cherish the chance to watch him in his classroom environment.. his interaction with the other children.. his level of participation.. and distraction. But other obligations had held this experience from me. This amazing woman then told me she had made a video tape of Will in class and extended an invitation to meet with me at the school to view it. On that brief 30 minute recording I saw a happy little boy, struggling to be part of the group, willing his own instinctive behavior into submission so that he could participate in these beloved activities. I saw a child who was taking it all in, organizing every detail into its appropriate place, sure to be drawn upon in a future need. I saw a child who seemed more aware of his enormous challenge than even I. But most importantly, I saw a child who was clearly autistic.

It's been years since our family began this journey of discovery with our son. That journey has led us to knowledge and understanding, to grief and pain, to acceptance and fortitude. But observing him there, in his own separate world, working through it all under the talented guidance of these skilled artists, was like being hit by a freight train. I awoke from my denial in that brief time and came to see that even though he does not display many of the "classic" behaviors so commonly associated with autism, many of his behaviors fit the mold perfectly. And like the many variations in the dance playing out just beyond the window pane this morning there are equally as many variations in the children we label as autistic.. yet they are all amazing.

Panic? Me? Nah..

Will sat quietly on the kitchen floor for an unusual amount of time this morning. I was busy preparing food for the younger one and wasn't too distraught.. a few minutes of calm is a nice change. But then I moved into his immediate area and he was up.. and in his hand.. nay extending out BEYOND the edges of his hand.. was a giant wolf spider! In hindsight he may have been wanting to show it to me.. look mom.. lookie lookie what I found! all full of excitement.. But I, instead of showing a calm genuine interest in his new found toy, totally lost it. I'm generally not terrified of spiders.. my 6 year old daughter is.. she insists on spider patrol before she'll agree to go to bed.. and we are routinely removing smaller less dangerous ones that I wouldn't have a problem with hanging out and hatching a brood right in the corners of my bedroom. But this one.. it was HUGE! And, in my own defense, even the experts state..

"the bite of the Wolf Spider is poisonous but not lethal. Although non-aggressive, they bite freely if provoked and should be considered dangerous to humans. The bite may be very painful. First aid and medical attention should be sought as soon as possible, particularly as to children or the elderly."

So who am I to argue with the experts? My reaction may have been a tad overblown but getting that spider out of his little hand and into a secure zone was primary on my task list. He gently placed it upon a shirt hanging over the chair at the kitchen table.. but my screaming at the top of my lungs (AAAAHHH NOOOOO NOOOO PUT IT DOWWWWN!!!) apparently startled my little boy and he thought his new friend would be safer BACK IN HIS HAND!! and so he lovingly picked up the giant demon spider off the shirt. This of course was followed by even more screaming by me.. NO!! PUT IT DOWN!! AHHHHH!!! I was then successful in knocking it to the floor.. where it ran and hid under my purse. Ih...

Mere seconds after it had all begun Daddy had arrived on the battlefield and was ready to assist. Move the purse.. squish. Will was genuinely distraught. One lethal spider.. his new found friend.. terminated. Guess it beats squishing a bunny.. but I can't help but wonder what sort of lasting impression this event, played out entirely by instinct, might leave on this little boy..

Where Am I?

Will was recently exposed to the wonder of maps at preschool. He's always had access to various types of maps.. from a simple laminated place mat to the big USA floor puzzle that he got for his birthday a couple of years ago. But somehow this exposure at school brought this interest to life and it's all he cares about now. If he's not putting together the puzzle.. or carrying the place mat around the yard.. he's eyeing more complex maps in the various books he has at his disposal. It's amazing. How many 4 year olds know all their state capitols? How many can point out all the states on a map when asked? Will has magnificent powers of memory.. perhaps this will be one of his splinter skills and he'll wind up as a cartographer. I cherish the times we can play this game.. he brings me his USA map place mat and we begin.. Where's Vermont? He points right to it.. doesn't have to think for even a second. Where's Sacramento? This goes on for an hour. He knows them all.. how many 40 year olds know all their state capitols? I'd venture to guess not that many. And here this little 4 year old boy, this amazing little creature who surprises me daily, knows them all.

Quick study

I always thought of myself as a quick study.. I could watch somebody do something just once and that was it.. I could do it too. When it came to the kids, though, it was a different story, even with the simplest things. But just this morning I grabbed a cup and flipped it over and drew a perfect circle using it. He had it down. He knew he had to put pressure on the lightweight plastic cup to keep it from slipping away. He knew not to apply too much pressure on the pencil or risk it pushing the cup away. He drew a perfect circle. I was so proud of him and, more importantly, he was proud of himself. =)

Progress

Yeah, team! Somewhere between the fun activities at preschool, and the humdrum life at home, my little wonder boy has learned to catch and throw a ball! He's helping to roll out the big rug with all the great alphabet letters on it.. he's participating in the scheduled activities in class. He's amazing.. and advancing every day. Look out world!

A day of pain..

Well I don't really know how to say it other than this was a bad day. Sometimes he just can't see the corners, the balance is off.. the head swings a little too close to the door frame.. or the counter.. and boom! Thankfully, they've all been minor scrapes not even really breaking the skin.. but still.. a lot of crying and pain that no kid should have to put up with. I can't help but wonder what it is that puts his equilibrium out of whack so that these mishaps come one on top of the other like this.. perhaps it's just that he's still trying to get over this cold and his perception is off. On the other hand.. he managed to catch himself with cat-like balance in a spot where any other kid would surely have plummeted into pain.

Working Toward Independence

That is the motto of the "new" preschool. New facility, new teacher, new classmates.. lots going on to shake up a 4 year old. So.. it's been a busy few weeks. Everyone seems to be settling in to this new schedule all right. Funny how in thinking about this theme it occurred to me that he IS a lot more independent than before this experience at school. In a lot of ways he holds it together better than his NT brother and sister.. he certainly handles stress better. So.. we're working toward independence. Still not verbally communicating but there are other ways he's getting his message across. Stay tuned...