T's first medal

Yesterday, T rode in the annual Fun Show at our local theraputic horseback riding program. Anyone who takes theraputic riding lessons there can participate in the Fun Show, and it was such an inspiring day. So many people of all ages and abilities riding these wonderful animals - and so many people there to watch and (quietly) cheer them on. Everyone was "judged", got a ribbon and a medal, and I don't know if I've ever been in a room where there were more people bursting with pride and thankfulness in their hearts watching their loved ones ride a horse.

T rode his newest horse for the Fun Show, and he did really well. In fact, all the extra people didn't seem to phase him at all once he was on that horse. He rode like the little pro he already is and grinned and laughed when he got to trot. Rob took pictures - if you are interested, here is the link: http://picasaweb.google.com/chesterley/Pals_fun_ride You can even see his first medal.

Verbal Behavior

We've had a busy week. We are embarking on a big new adventure for T - starting a Verbal Behavior home program for him. Verbal Behavior is a type of Applied Behavior Analysis, a treatment program that has been used with autistic children for decades. Here's a definition: ABA is a teaching technique that enables autistic children to learn and communicate by identifying skill deficits and then breaking these deficits down into manageable units. Through procedures of reinforcement, shaping, prompting, and generalization development skills are taught and expanded on into more meaningful units. Verbal Behavior (ABA:VB) focuses on the acquisition of speech and communication. Since T's second diagnosis is Severe Receptive and Expressive Language Disorder, this made sense for us to go down this road for him.

So what does this look like? How does it work? The first step was finding a consultant. She comes from Indy once a week to train me, our team of VB therapists, set up and maintain the program. If we do this as prescribed, T should have 25-40 hours/week of this therapy. We'll see if we get it up to that. Last week, my big task was to go through the ABBLS (the Assessment of Basic Language and Learning Skills): 26 categories of skill sets (visual performance, imitation, requests, labelling, etc.) with 10-52 tasks each - assessing T. Whew. The ABBLS assessment clearly shows us which tasks he has not mastered yet, and we use these tasks as the basis for his weekly program.

Teaching the tasks is done by breaking them down into small steps and rewarding each step completed successfully. We're doing this to help with toilet training - another post for another day. Rewards can be food, use of a toy for a few seconds, a video or music for a few seconds, or even tickles or praise.

It's a huge undertaking, and I'm exhausted from the week. Thomas, however, is already really responding to the techniques, and I'm thrilled and filled with hope for what it can do for him. I'll post soon about the potty training - that will give a clear example of how this works (even though potty training isn't verbal, the technique can still be used.)

Comedy Central's Night of Too Many Stars

Tonight, Comedy Central is hosting "An Overbooked Benefit for Autism Research." I'm listening to the webcast as I write. This is so amazing! Jon Stewart is the host, and among those appearing: Jerry Seinfeld, Will Ferrell, Jack Black, Martin Short, Steve Carell, Stephen Corbert....I am so excited. I also wanted to cry when I saw how many people were appearing and how well-known they are. If you are reading this Sunday, Oct 15th, turn on Comedy Central! I am so incredibly thankful to all those involved.

Circle of Support

Wednesday night, Thomas' Circle of Support met for the first time. Rob wrote a post on his blog about this, and I couldn't say it better. It was a two-hour long God Moment.

http://chesterley.blogspot.com/2006/10/circle-of-support-1st-meeting.html

The Itsy Bitsy Spider

One of the challenges that T faces is that he doesn't easily imitate actions done by others. This is a huge barrier to learning, and one we are working on diligently. This is why I had to post about this fun thing he did yesterday. He was watching a Blue's Clues video and at the end, the whole gang sang "The Itsy Bitsy Spider" (that was what they figured out - Blue wanted to sing that song.) Thomas watched, looked down at his hands, put his fingers & thumbs in a diamond shape, and sort of bounced them together, all the while looking back to the TV to move along with Steve and Blue. He was imitating! He was!!!

Teletubby dance

To my chagrin, one of T's favorite TV shows is Teletubbies. Not that there is anything overtly annoying or damaging about them (I've gotten over the creepy baby face in the sunshine - why do I find that creepy?) but they aren't using recognizable language and even though his development is delayed, he's certainly beyond the concepts they teach on the show. But they have big calm faces and are brightly colored and hey, it's a gentle enough show and he finds it absolutely mesmorizing and entertaining.

In a slightly nutty moment, I danced along with one of the Teletubby dances in the kitchen the other day while T ate his snack. Usually nothing can avert his attention from the screen when the Teletubbies are on, but he realized I was doing something silly and watched. The look of absolute delight and amazement he had was worth any silliness or embarassment I felt for dancing with the Teletubbies. He grinned and watched me, then looked at the TV (Yep, by gosh, she's doing what they're doing!) and looked back again - another little connection, another little magical moment.

Locked out

One thing that Rob & I have just revelled in lately is how T can open the screen & sliding door to the deck for our dog when he wants in or out. It is so neat to see him to that! So a few days ago, Rob & I went out on the deck to set up the timer for our plastic pumpkin (it is in our front yard, but the outside outlet is in the back.) Most of the time I'm pretty good at foreseeing a situation play out with T, but my mind was not on alert mode at this point. So while Rob & I were plugging in the timer for the pumpkin, T saw the doors open, walked across the living room, and promptly closed and LOCKED the door. Then - well, we may as well have had movie cameras or America's Funniest Home Videos filming us - we stood there knocking on the glass door, asking to be let in, all the while our son was sitting on the floor, easily kicking back and drinking from his sippy cup, glancing up at us occasionally but having no idea that mommy and daddy were locked out - and making absolutely no move to let us in. Again with the double edged sword - our son was unable to respond to "come here" or "come open the door" - definately potentially dangerous - but at the same time, he knows how to close the door just from watching us do so. (Kids with autism don't do this very easily or at all - most everything needs to be taught hand over hand and very deliberately.) At least we knew that we had a spare key hidden outside for just such occasions and we were able to laugh at it! So we used the key and all was well in a matter of moments...and I'm certainly wary of going on the deck without T with me now!

Ladies' man

When we arrived at the Y for T's Adapted Swimming class, his usual volunteer (female) wasn't there. This happened one other week, so I didn't think too much of it - until he refused to get in the pool. He's walked right down the stairs into the pool in previous weeks. The new volunteer assigned to him this week was a big, friendly older gentleman who really wanted to work with him. Didn't happen. So a college-age guy (new to this volunteering) tried to get him to come in the pool - no luck. I'm nearly stumped, but took a shot in the dark and said that he's always worked with women in the pool before - at camp this summer, with me and his Auntie J and Grandmama, and his usual volunteer during these lessons. A young woman swam over to the stairs, held out her hand and said "Hey Thomas, come on in"...and he did.

At 5, he's already a ladies' man.

I want it to be personal

Today two members of T's team (I consider everyone who works with T part of a team) turned down an opportunity to take part in something we are putting together for him. It is a Circle of Support, and I will post on that on a future day. It will consist of friends, teachers, therapists, babysitters/caregivers - essentially, his team and our friends. Eventually, his friends will join the circle (when they are a bit older.) Anyway, back to the two who turned us down. They had a very reasonable, professional reason for not joining us: they can't do this for every kid with autism that they work with, so they won't do it for him. They want to stay in touch with what's going on via email and phone calls - it's not that they aren't interested, but meetings are a no-go. These are two people who have worked closely with him for about 20 months, and it's safe to say know him pretty well.

I was disappointed by their decision, but in a way I do understand. It still bugs me that they said no, and thankfully Rob was home for lunch today and we processed this together. Left to my own devices, I over-analyze, dramatize, and can blow things out of proportion. (Being an opera singer was a good fit for awhile, after all.)

At one point, Rob (who was also bummed that they said no) said that it probably wasn't personal, and that we shouldn't take it personally - that they are doing their job (no more, no less) and they were probably just making sure that they weren't getting too personally involved. Yes, this is true. But as I thought about this, I said "But I WANT it to be personal!" I want people who work with T to care about him and love him so much that they will take time out of their lives to help his life flourish. I want people who are passionate about him because working with him is not for the faint-hearted, and neither is planning for and building his future.

We are spoiled - so many of the people who do work with him absolutely love him. Case in point: A former SLP (Speech & Language Pathologist) came over after school this week for a visit because he kept saying her name over and over - I emailed her to let her know, and she was here, on the floor playing with him ON HER OWN TIME within 48 hours. These are the people I want working with him. Do I expect too much? Perhaps so, but isn't that what I have to do for T? Expect the unexpected, aim higher than I think possible?

Okay, take a deep breath. They want to know about the Circle and be involved, even if it is only by phone & email. I can also understand having to say no to some things. I'm having to do a lot of that myself. But I'm still disappointed, darn it.

A Year Ago Today

One year ago today, Rob & I took T to a children's hospital for an official diagnosis. We made a conscious decision not to diagnose him before then because a diagnosis wouldn't have changed any of the therapies we were doing for him. We were already doing everything we could and he was getting full services from the public schools - we didn't want to label him too early and have that sitting in his medical and educational records until we were sure - and ready. We knew that it was at a minimum PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) but more likely was probably Autism.

We drove there the day before and spent the night at a hotel nearby. Our appointment was at 8:30 the next morning, and we didn't want to have to worry about finding the place after making the long drive, let alone have T go through that entire day on the Dramamine he needs whenever we go more than 20 minutes in the car. We wanted him to be at his best even though we were in a new place, in a new room with new people. Not the best scenario for these kiddos.

The procedure took the whole day. It was professional & thorough, and well done - many people spent time with us and with T, from a pediatrician to a child psychologist and speech therapist. They observed, asked questions, and midway through the afternoon broke the news to us that we expected. I don't remember the exact words, but it was something close to "The best way to explain your son's behaviors and challenges is to say that it is autism." Words were spoken after that, but I do not remember them. They were kind and supportive - that I know - and I think it was recommendations for what to do next. I recall several reactions: relief that we finally knew, feeling like I was kicked in the stomach, numb, suspended in time...and all the while I sat there with Rob pretending to listen. After a few minutes, the child psychologist took a moment, looked at us and gently said, "So, how are you with this?" I said "Okay" and then burst into tears. I cried hard for a minute or so, with Rob rubbing my back and the psychologist giving us a moment, then I stopped, dried my tears, ceased the sobbing and said, "Okay, what do we do now?"

On the drive home, we called our family. They were all awaiting the news, and all were true to their loving, supportive selves. We are blessed with a family that has supported us all the way, sharing our concerns, loving us and not undermining or doubting. This is a huge blessing.

It took us about 2 months to do anything at all with the news. It was all we could do to just keep moving forward, let alone act on any of the recommendations. But by late December, we had met with a local child psychologist who specializes in autism and we had requested a reconvening of T's case conference at school to get him into a different preschool. It took a while, but we hit the ground running.

My challenge over the next several months was feeling like I was never doing enough. I'm a rule follower. I like checklists. I like following guidelines. I mean, I'm even a classical musician, for crying out loud - I bring to life what someone has already written down. I do not do jazz or improvise. Period. But here's the deal: there is no one way to do this. No right way. Each child with autism is slightly different, and each needs his/her own combination of treatments, therapies, educational practices, and even diets or nutritional accomodations. We have had to become instant experts in a field that is exploding with research and new treatments, and I've spent many months feeling completely inadequate, filled with self-doubt, and thinking that I'm not doing enough.

Today, I can honestly say that I feel exceedingly good about what all we have set up for T. It has been a long road, and we have just begun. Just a few days ago I learned of another therapy that sounds like a great fit for him. It never ends. But at least we are on top of it now, and T continues to amaze us with new wonderful things everyday. Tonight at 10 minutes before bedtime, he took the potty and bathtime PECS pictures off the bathroom door and handed them to me for the first time, telling me that he needed to go potty and wanted a bath, too. Brilliant child. Something new everyday. I am filled with wonder, amazement and love.

PECS

One of the ways that T is most effected by autism is his verbal communication, or almost complete lack of it (until recently.) The program that we have used for the last two years is PECS, or the Picture Exchange Communication System. http://www.pecs.com/WhatsPECS.htm I'm doing an entry on this today because he's started doing something new with this and it's very exciting. But first: in a nutshell, PECS is using pictures to communicate: it begins with just using one picture to request a highly desired item (hello cookie!) and ultimately ends with the person building entire sentences with these pictures (I want juice, I need to go potty, I'm feeling angry, etc.) He's able to request nearly every food item he wants as well as some activites like swinging, jumping, etc. This has opened up communication for him which is HUGE and gives him a sense of control over certain parts of his world. Major big deal.

So what's new? We have put most of his toys into clear plastic bins with lids and labelled them with a PECS picture of what's inside. The idea: he has to communicate to get the toy he wants. This is what we have to do - bombard his isolated world in such a way that eventually he prefers to be with us (people) and not just with objects. So he needs to approach a person to get a toy. Well, he did it for the first time this weekend! In fact, Rob & I were stunned to hear him say "I love you" repeatedly on Sunday, and we both wondered which toy he was echoing. We knew it was one he hadn't seen in a long time. Lo and behold, he walked up to the bin of stuffed animals, took the picture off the bin, took it to Daddy, chose the Leap Frog Baby Tad, and pressed the heart on Tad's cheek to get him to say "I love you!" Connections!!!!! Communication!!!!

Go Thomas, go.

I won't talk too much about the double edged sword of hearing him say "I love you" for the first time and the fact that it was simply echoing a toy. This is part of the heartache everyday. BUT...he CAN say it now, and eventually he will learn what it means...and say it to us.

Day in Indianapolis

Yesterday T and I took a road trip to Indy for a haircut - and some fun too! We go to a place called Cookie Cutters which is a "salon" for kids - these are the only places that T will tolerate having his hair cut! He was petrified of salons/barbershops before - would start crying just walking into one of them. But these places are made for kids. They sit on seats that are trains or cars and watch a favorite DVD (or for the older kids play video games) while they get their haircut. Seeing a familiar video calms T enough to allow me to put him in the chair/train/car, and fortunately, keeps him occupied enough to let the stylist cut his hair! My eternal thanks goes to my sister-in-law that introduced me to these places - otherwise, I'd still be trying to cut his hair myself, which I did for 3 years. The good news is that he did really well! In fact, after a few quick tries with the clippers, he seemed to enjoy the vibrations of the trimmers around his ears & neck. Big change & improvement from previous haircuts.

The next stop was Toys R Us. One goal was to see - if by some miracle - the new TMX Tickle Me Elmo was there. Yeah, right. No Elmo. But the other goal was met: T got to choose a toy, and something really neat happened. As we were walking by the die-cast car section, T said "Car", and as I continued on (I thought he was just identifying, not requesting) he said "NO okay!" which is his unique little way of saying NO. So we went over to the cars, and he chose one. A very nice black 1970 Thunderbird - the kid has good taste. And I love that he loves cars.

Last stop: the Indianapolis Zoo. What a great place! He's really beginning to pay attention to the animals and genuinely seems to enjoy himself. There were many happy moments; the picture above shows one - the Dolphin Adventure Dome! You are actually underwater watching the dolphins swim above & around you. T LOVED it.

Then came the carousel. A nice thing started all of this - a family had some extra ride tickets, saw that we were about to buy some to ride the carousel, and just gave us theirs. How great is that? T loved the carousel - he laughed and smiled the whole time it went 'round & 'round. In fact, he loved it so much that unfortunately he had a complete meltdown when the ride ended. Screaming, pulling my hair, pinching whatever he could grab on me...it was one of the worst tantrums he's had in a long time. But who could blame him? We were doing so many new and different things yesterday, and the meltdown came at 4:00 - past snacktime, and I had taken him off one of the coolest rides he's ever been on. And I must add that the staff at the zoo were so kind - even offered to let him ride again when I explained what was going on. But have no fear - within 10 minutes he had calmed down and was quietly enjoying a granola bar and recovering from the trauma. And we were able to have a nice time for the rest of our visit.

These moments are difficult, but I've discovered that remaining calm really diffuses the situation - even when having my hair pulled or being pinched hard. Boy is that a test when your child is hurting you. He started with these behaviors within the last year, and they really caught me off guard at first, and I'll admit I was not exactly calm when he started. But I noticed pretty quickly that if he got a reaction out of me, he'd do it more. So my experiment with not reacting and remaining calm and understanding seems to be paying off (saying "I know, you didn't want to get off the carousel. You really liked it and you wanted more, but it was all done.") . The hair pulling and pinching has decreased quite a bit. And we are very lucky - I know other kids with autism who tantrum for an hour or more. T has his moments, but never anything like that.

So all in all, a long but really great day. I think this will become a regular occurance - when he needs a haircut, we'll have a big city day.