School picture 2010-2011

One thing about being a writer, particularly in this digital world: Your words live on (for a little while, at least) to haunt you. My blog is a little over a year old now, and “Billy's Story” is overdue for an update. He and I have both come a long way in the past year.

I wrote that little summary of our experience more than a year ago, and I cringe now at some of the words I used. Our therapy plan has changed significantly, because as Billy has evolved, it's been necessary to address different challenges and build on his progress in certain areas.

But rather than changing it completely, I'm going to take a page from Temple Grandin's book – quite literally. I've been listening to her latest edition of the memoir Thinking in Pictures:My Life with Autism on Audible and in the forward to the new edition, she states plainly that science has made advances since the memoir was first written, and her beliefs about autism have changed somewhat as well. Rather than change the original text of the book, she includes notes at the end of each chapter, providing scientific updates and points on which she has changed her opinion from her original statements.

So I'm going to provide an addendum to my original story, and bring you a little bit up-to-date about our progress as a family, and Billy's personal breakthroughs. For those of you who follow my blog, there will probably be little to surprise you here, but if someone is new to Life Is A Spectrum, I want them to know where we are ... but I also want them to know where we've been.

In “Billy's Story,” I referred to Billy “recovering from his most damaging symptoms” of autism. Today, I would describe our goals differently. In fact, our goals are exactly the same as the goals of any other parent of a 4-year-old child: We want him to be happy, healthy and succeed in school and socially.

I wouldn't describe his autism as “damaging,” but instead “challenging.” (The only thing that could be described as "damaging" is when he hits himself in the head, which happens rarely now, and only when he is very upset.) Some things are harder for him. Some things come quite easy. So like the parents of any child, we're trying to use his strengths to help him make up the gap in some of his most challenging areas.

Loving the school Halloween party this year!

Therapy Plan

He's in full-time pre-K five days a week during the school year. There he receives speech therapy three times per week and occupational therapy twice per week. Also, he receives ABA therapy in the classroom twice a week.

I do not have words for how great his teacher is. Ms. Jade Harding is more than a great pre-K teacher; she has a calling. I have never seen her that she wasn't practically bubbling over with joy -- even at 4 p.m., during a conference at the end of what I'm sure was a very long day with 18 under-5s. She is dedicated, creative, super-intelligent, and well-informed about special needs. We won the lottery when we ended up in her class. And the aides in Billy's classroom, Ms. Patty and Ms. Melissa, have a depth of patience and love for their little charges -- even on the most challenging days (and I know they have some) -- that fills me with undying gratitude.

His school speech therapist, Ms. McClung, is a PRO. She has high expectations of Billy -- and all of us. In no uncertain terms, she told me to stop referring to myself and Billy in the third person. And sure enough, when I stopped, he started phasing it out. She also creates great visual tools for the classroom, including this awesome chart that helps me talk to Billy about his day. It has pictures of all his classmates, as well as the various activities they do, and we put together stories about his day. I'm not sure they're always true, but he's starting to get the idea.

And his OT, Ms. Stacee, has been one of our "rocks" for the past 18 months (she was his OT at his old school too). She was the first one to look me in the eye and say, "Expect more. He can do it." And he can. Actually, I think he does more for Ms. Stacee than just about anyone else; she has this magic way with Billy that gets him to write words and dress himself, and she was working the potty training angle long before any of it really "clicked" for the Billster.

Outside of school, Billy attends individual speech therapy one hour per week at the FSU Speech & Hearing Clinic where he also gets group therapy once a week. In group, each child is accompanied by a grad student speech therapist, and they work on appropriate group communications in playing games, completing art projects, and just generally playing together. This program has been another godsend. Not incredible well-publicized, it is staffed by grad students and their supervisors and offered at an amazingly affordable price -- if it's not covered by insurance (which ours isn't). The professional staff brings a wealth of experience and knowledge of the latest science, and the students bring a kind of enthusiasm, creativity and commitment that inspires me throughout the week.

His "eating training" with Willow.

We also have a wonderful ABA team from Behavior Management Consultants – the same team, in fact, that supports him in the classroom – coming into our home once a week. They've worked with us on eating, potty training, dressing, and skills that will also help support his classroom success, such as maintaining attention on a particular task for longer periods of time. Also, handling emotions is one of our ABA targets.

I have completely changed my opinion of ABA therapy since Billy's diagnosis. I had some bad information early on, when a well-meaning but mis-informed OT told me that ABA was like "dog training." Nothing could be further from the truth. Well, except that maybe some dogs exhibit a lot of the same behaviors as my sensory-seeking autistic son, but that's a subject for another blog post ...

There's absolutely no reason that Floortime therapy and ABA -- at least the way it's implemented in my house -- can't work hand in hand. In fact, I've seen Billy wonderful grad student therapist, Ms. Elyse, use the "follow his joy" principle to work on some of the skills we're targeting. It's clearly easier to get him to "follow two-step directions" when those directions include his favorite toys, favorite outdoor games and favorite foods. And Dr. Bailey, who is supervising Billy's program at school and home, has shown me the science, explained the techniques and worked with me so that I can implement the same program on my own.

Most importantly: It. Works. Hands-down, best immediate results we've ever seen. We target a behavior problem, and then they talk me through the solution. Almost every time, I see some progress within a week.

Thanks to our team, Billy is now asking questions, he's completely potty trained, and he eats a slightly more varied diet. His functional language is expanding every single day, though he still enjoys scripting his favorite books and movies or TV shows. He's reading, learning math and operating the computer. Academically, he's working at age-level or beyond. Socially, he's still up to a couple of years behind his peers in some ways.

Beyond Therapy

The iPad is our friend.

Tallahassee has a wonderful city-subsidized gymnastics program. Billy is in a special Adapted Gymnastics Class with other elementary-age boys (he's the youngest) where he learning all kinds of skills. They stretch together, practice on the balance beam, trampoline and obstacle course and climb ropes. The most important lessons he's learning here, though, I believe, relate to taking turns and interacting appropriately with peers. I was also inspired by Lisa Jo Rudy's book, Get Out Explore and Have Fun, to let him spend some time each week focused on his strengths (physical strength and flexibility being a great asset of Billy's) rather than having every moment focused on his weaknesses.

Billy's school is also starting a Young Athletes Program. This wonderful sports program is a part of the Special Olympics network and is geared toward kids too young to compete in the Special Olympics, which starts at age 8. Normally developing peers are also involved, serving as great role models for our guys and gals to acquire greater skills in following game rules, achieving a team goal, and working together. Many of the kids in this program are fully expected to test out of their developmentally delayed label prior to the age of 8, but the Special Olympics invites all kids to participate.

Moving forward, our extracurricular goals are to find a swimming teacher this spring, and an environment in which Billy can start more structured music education. He retired from Kindermusik, but his love of all things song and dance is ever-strong, so we just need the right teacher and it make take some trial and error to find the best fit.

Ebb and Flow

I have changed a lot in the past year too. As have Dave and, of course, Willow, who will be two very shortly.

As each one of us moves a little this way or that on our own personal spectrum, it shifts the rest of us around. Watching my children grow and find each other has been the greatest joy of my life. Willow is the best therapist that money could never buy, and Billy learns more from her grabby hands constantly reaching for him than we could ever teach him.

I've faced a lot of my fears, found a few new ones, and let so many of them go, I'm happy to say. It didn't happen instantly or magically, but my fear of Billy's future is pretty much gone. It's kind of weathered away like some big rock at the edge of the ocean. His progress, with its ebb and flow, has washed away most of the sharp points, leaving something small and round and manageable.

A year ago, I would have desperately grasped at the label “high-functioning,” so eager was I for a guarantee that autism wouldn't doom him.

Today, I hate the term “high functioning.” My son is not a washing machine; he's a phenomenal boy with more potential than I could have dreamed. He defies any label.

And while a year ago I was hoping for “normal” life, now I know that first of all, that's not possible. Billy is too special for that, and his life will be extraordinary. Secondly, I've learned that normal doesn't exist.

Because life is a spectrum. Thank God for that.