LIFE IS A SPECTRUM / Autism: Billy's Story

Autism: Billy's Story

A quick journey from birth through autism diagnosis and our first steps along the spectrum ...

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Billy was born on July 23, 2006. That first day he was rushed into surgery for a blockage in his intestine. But after a week in the Neonatal Intensive Care Unit at Gulf Coast Community Hospital in Panama City, he went home a beautiful, healthy eight-pound baby.

After his surgery, Billy never had another problem with his digestion, eating heartily and gaining weight to the point of being off the charts in height and weight at every check-up. He hit all of his milestones on time, if not early: He babbled when he was supposed to babble. He smiled and made eye contact. He walked at nine months. We vaccinated him on the schedule we were given by the pediatrician and other than the occasional low-grade fever, he never had any problems.

Billy never seemed to stop moving. And he didn't just run; as soon as his feet touched the ground, it was like he was shot out of cannon – sometimes towards the closest wall as he appeared to bounce off objects he apparently didn't notice in his path, pick himself up and zip off again.

He began to say little words at about nine months. He would call “Daaaa-Daaaa!” early on and identify his grandparents as “Nan-nan-nan” and “Pop.”

But then, a few months before his 18-month well-baby check with his pediatrician, Billy stopped talking altogether. I laughed it off to the pediatrician as a sign of stubbornness, but the doctor told me that “losing language” is a red flag.

He sent us for a hearing test, the first test in a long journey towards diagnosis. But I had no doubt that my child would be stamped “normal” after we jumped through a few hoops.

Hearing tests (inconclusive, because Billy wouldn't tolerate much messing with his ears) were followed by a speech evaluation. And then another one. And then a trip to the neurologist. And then an MRI.

 

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During what would turn out to be another 18-month process, my emotions ran the gamut from extreme skepticism that there was anything "wrong" with my child to a growing fear that early doubts were entirely justified.

We began with speech therapy at 18 months, because there was no doubt that his speech was delayed. He wasn't saying anything. Twice a week, we drove an hour each way to our speech therapists where we paid $60 per half-hour for a session that wasn't covered by our insurance.

Concerns of our speech therapist – such as Billy's constant toe-walking – sent us to the door of an occupational therapist. After observing Billy crash and bang around a play gym, the OT suggested he could be suffering from “sensory processing disorder.”

Sensory processing disorder occurs when an underdeveloped nervous system can't make sense of the sensory input it receives. A child might have difficulty taking in sounds, for instance, analyzing them and assigning more importance to human voices than other background noises. Another child might be “tactile defensive,” making human touch almost unbearable to them.

Billy was a “sensory seeker,” they explained, hence, his constant movement, high pain threshhold and desire to walk on his toes. He doesn't get enough input from walking normally so he goes up on his toes so that he can feel each step more profoundly.

We couldn't afford the additional $400 of uncovered medical expenses each month that occupational therapy would mean, but at that point, like a godsend, I was introduced to the Early Steps program. Available for developmentally delayed children in Florida up to the age of three, Early Steps connects families with early intervention services, free of charge, that can include speech therapy, occupational therapy, physical therapy and more.

By the time Billy was two years old, Early Steps had arranged weekly speech therapy in our home town and sent a nurse/early interventionist to our home weekly to work with Billy on other skills, such as sorting, problem-solving and fine motor skills.

In addition, they connected us with a wonderful program through the Florida Elks that provided free occupational therapy in our home once a week. Our OT, Anita Smart, changed our lives and our attitudes towards our son's development. With the patience of Job, she took on the task of educating us on the latest research and innovative new treatments, such as therapeutic listening, a headphone and music-based therapy that we started with Billy.

 

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We watched Billy's development with fascination, and I'll admit, more than a little fear. He didn't say a word until he was two years old, and then in one week, he recited the entire alphabet and counted to 10. Before long, he was reciting entire books and TV shows, but he still would avoid making eye contact if you called his name and his “functional language,” actual communication of his wants and needs, was limited-to-nonexistent.

I was still looking for was an expert who would say, "Your son is definitely not autistic," because to me, that label meant the end. That I would lose my son. That he would slip away from me and lose his smiles and affection and love of life -- all of which he has in spades.

By the time he was three, it was clear that he was not slipping away -- but some of his differences from his peers have become more apparent. He was – and is -- a bright, beautiful, extremely funny boy. He clearly had an amazing memory and vocabulary. He could answer the question, "What is that?" almost every time. He recognized animals, plants, people, the planets, food ... but he couldn't tell you what he did during the day, what he likes to do, what his name is. He never asked any questions.

So on the advice of a neurologist, we went for an MRI. It was a harrowing experience. The drug they gave him to sedate him had hardly any effect, and when they put in an IV, a meltdown of Armageddon proportions commenced. The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

I asked Anita, "Is that what autism means now? A lack of brain tumor or seizure disorder or stroke? None of that and you're suddenly autistic?"

She was kind when she responded to me. "No, Amanda. There are benchmarks for communication delay, motor problems and behavior issues -- and Billy meets all of those."

Oh. OK.

I can say it: My son is autistic.

There are upsides to an official diagnosis. Suddenly, miraculously, our insurance covered all Billy's therapy. I think our Florida legislature's work requiring some insurance companies (and not all; there are big loopholes) to cover autism helped as well.

But I was beginning to realize that therapy wasn't like a round of chemo: a certain number of visits and Billy would be “fixed.” There was nothing any therapist could do in 30 minutes or even an hour a week that would make much difference at all, if it wasn't accompanied by a vigorous at-home program as well. We stopped looking for an expert who would give us the prescription for our child's disorder, and realized, we're it. His parents. We're the experts.

Astounded by doctors who suggested mood stabilizing drugs for our three-year-old, we committed ourselves to understanding the treatment options and making an informed decision about our son's therapy. We approached any proposed treatment with a skeptic's eye, first demanding the science behind it and then asking questions like, Is the treatment potentially dangerous? How will we know if it's working or not?

One of the most mystifying aspects of the world of autism treatment is the level of animosity and political bickering involved. Though there are as many ideas about treatment, cause and potential cure as there are autistic children, there are two distinctly separate camps at opposite poles: First, there are those people who believe that biomedical interventions are the only way. These folks are also firm believers, like celebrity mom Jenny McCarthy, in the link between vaccines and autism.

Then there are those who completely dismiss the effectiveness of any biomedical interventions outright, despite a large body of anecdotal evidence that some measures, like dietary changes, have, in fact, made a marked difference for some children.

 

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Between these two camps is a spectrum as wide as autism itself. Bewildered parents are left to ping-pong back and forth between its poles, driven by desperation and hope.

This is my own personal soap box, but as parents of special needs kids, we've got to stop beating each other up. We're each other's best hope of putting together the puzzle of autism and as anyone who has ever put together a puzzle will tell you, that's hard to do when someone's standing in the background yelling at you, making fun of you and saying "You're doing it all wrong." Ok, that little rant is over.

Sometimes I think Floortime therapy found us, rather than the other way around. A move to Tallahassee necessitated finding a therapist who was certified to continue Billy's therapeutic listening program, a non-invasive form of therapy that he seemed to like and during which he had made some remarkable gains. Could we definitely ascribe those gains to therapeutic listening? No. But it certainly did no harm; there was science to back up its claims, and we were cautiously optimistic.

Our search for a qualified therapist led us to Tallahassee Memorial Hospital's Pediatric Rehab program. Kathy Merydith, our new occupational therapist, suggested we look into the innovative work of Dr. Stanley Greenspan, the co-creator of Floortime Therapy. She recommended his book, Engaging Autism, which we consumed enthusiastically.

Basically, Floortime demands that you get down on the floor and play with your kid. If he likes opening and closing doors? Well, let's do that with him. Eventually, we add a “playful obstruction,” such as a hand preventing him from opening the door. He has to make some sound or some effort to communicate to get the hand to release. And wonder of wonders, within one short 20-minute session, he was demanding, “Open the latch, Daddy!” every time.

Floortime assumes that an autistic child's primary deficit is his lack of connection with people. We want to keep him from disappearing into his own world and teach him that being with people is better than being alone. Being together means laughter and joy and good things. As such, we try to build moments of joy into as much of our interaction as possible, and build desire for communication.

Building desire for communication is key. Floortime differs from some therapy techniques in that it doesn't try to teach scripts to autistic kids. Memorizing words doesn't mean that you understand them. We're sure Billy can memorize anything. We want him to say “I'm hot,” because he feels uncomfortably warm, not because he's memorized that's what you say when you're standing outside in the sunshine.

Meeting all our criteria for scientific rigor, Floortime passed one more all-important evaluation: it worked. Every time. Intensely engaging Billy in joyful interaction for a solid 20 minutes always results in some new gain, from a new slice of functional language to a new emotional connection with people. He cuddles his sister. He seeks out other children on the playground. And in one glorious, heart-bursting moment, he threw his arms around me and shouted, “I love you, Mama!”

 

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He goes to pre-Kindergarten at Chaires Elementary now, where he loves his teacher and his classmates. He talks more every day, and sings almost constantly. He plays with other children, smiles and laughs, and breaks my heart with his capacity for love.

Floortime isn't the only therapy we're involved with. Billy gets speech therapy three times a week at school, for 30 minutes a session, and one 30-minute session of occupational therapy per week at school. Together with his patient and dedicated teacher, Mrs. Thorp, Ms. Stacee (his OT) and Mrs. Burch (speech therapist) create visual supports to help him better manage his day: He has a picture schedule, a social story for the bathroom, a visual timer, and pictures of his classmates.

He also gets 45 minutes a week of private OT and 45 minutes a week of private speech therapy through Tallahassee Memorial Hospital. TMH has a wonderful "sensory gym" full of swings and various therapy balls and other interactive toys. Billy runs in there like it's Christmas morning. Both his OT (Ms. Kathy) and his speech therapist (Ms. Janet) are trained in Floortime and involve either myself or Dave in every therapy session. (I think that is incredibly important; if you can't observe and participate in the therapy session and reinforce it with what you're doing at home the rest of the week, it's a waste of time.) A special perk for TMH clients is that Billy also gets to attend, free of charge, music therapy once a week. And he LOVES that.

Because our therapists helped us discover that we could use music as a way "in," we also signed him up for weekly Kindermusik sessions -- a class we attend as a whole family now. I cannot speak highly enough of this program and our wonderful teacher, Jaci Niks. She has a gift with children that is truly a miracle -- not to mention a beautiful singing voice.

Billy isn't cured by any stretch of the imagination. “Cure” isn't a word we use any more. What does it mean? We sort of like “recover,” because we're cautiously optimistic than he can recover from his most damaging symptoms. But we wouldn't want him to be “cured” of his excellent memory, his pitch-perfect singing voice or his fascinating ability to make mental associations and connections that would never occur to us.

Most likely, autism is a brush with which Billy will be painted the rest of his life; the picture may change with time, but we have no doubt it will always be beautiful.

Reader Comments

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Hi, Amy!

Hi, Amy!

I'm so glad you got in touch, and I would love to speak with you privately. If you'd like to email me directly, you can do so at AmandaBroadfoot@gmail.com. If you'd like to meet in person, I would love to invite you to come out to the free screening we're doing of the film Loving Lampposts: Living Autistic, this Sunday at the FSU Student Life Center at 3 p.m. There are going to be a lot of other people there from the local autism community.

However, if that doesn't work for you, I'd be happy to get together some other time to talk about our kids. I certainly understand that feeling of expecting everything to sort itself out by a certain age. For me, it was 5: I thought at one point, "He'll be 'caught up' by the time he starts kindergarten."

Well, he's going to be starting kindergarten soon, and the term "caught up" doesn't even make any sense to me. In many ways, he's learning at his age level or beyond. And yet, there are things that he still finds very difficult that his 2-year-old sister has mastered easily.

"Acceptance" of the autism spectrum is an ongoing process for us parents, I think. At least, it has been for me. Because the realities of the autistic brain -- at least how it manifests itself in my son -- are constantly being revealed to me. And my assumptions are constantly being challenged.

Keep believing in your son, just as you're doing. No matter what label eventually gets assigned to his developmental delays, trust your own instincts, and keep getting him the help he needs.

And reach out. Because we moms need help too. I'm here if you need someone to talk to :-)

All the best,

Amanda

My son

Reading your story is such a comfort, and an encouragement. I too, live in Tallahassee, and have traveled many of the same roads your journey has taken (TMH rehab, MRI, Early Steps, etc). Macen became a client of First Words, and subsequently, Early Steps when he was only 13 months old. I knew from the time he was about 2 months old that something wasn't typical since I had a typically developing 2 year old. He's now 3 1/2.

Macen has been diagnosed with PDD-NOS. He doesn't have some of the characteristics of Autism, but others that are slight in autistic children, are profound with Macen. For example, he has no 'savant' skills that we can tell nor does he seem to have many of the social impediments of many autistic children. But he has profound motor skill delays/impairments that prevent him from even using a fork or spoon effectively (even at 3 1/2)

I am writing because I was googling Tallahassee Floortime to see what was available here. Macen has had early intervention, OT, PT and speech for years, and though there have certainly been positive gains, I think he needs...well.... more... The two main contenders at this point are ABA and Floortime. I watched a documentary on PBS called 'Autistic-like' and i felt really convicted that I needed to do much, much more for Macen. I have felt very overwhelmed over these past few years, and that's lead to a lot of indecision on my part. I guess I sorta held to the belief that he would be cured by the time he reached that magic 3rd birthday. Didn't happen, in fact, he's fallen further and further behind the curve.

I would love a chance to talk with you in person or over the phone. Due to my denial of the permanence of his condition, I have (until recently) refused to seek out other parents. His last evaluation in December proved that I needed to do more and find more...

Your story summed up my thoughts in a way I've never been able to put into words... Thank you for putting in writing what my heart has been feeling for a really long time...

Hugs to all of you!

Wendy

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cm1

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.

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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.

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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

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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.

Reader Comments

Twists and Turns

Thanks for sharing your journey through autism. It reminds me that there are many twists and turns that we all go through in terms of managing autism. You inspire me to keep my head up as I try to find a "new normal" to deal with our family's autism journey.

If you wouldn't mind, please contact me as I have a few questions about services in Tallahassee.

Love the love

I love the love that speaks through your words about your son! How amazing you are in that place where you love all of him and how much you can achieve together with your child if you're comming from that loving and accepting place. I came across this clip where they do the same, also from a loving and accepting attitude enter the world of the autistic child. In the clip they're showing that they were able to recover the child from his autism by following the son-rise program. It inspired me to see outside the box and set no boundaries for yourself. I think you can reach for so much more that way. Enyways, I wanted to share it with you, maybe you'll enjoy it aswell.

http://youtu.be/sV40Fex-z5Y

Sencho

Beautiful...

Thanks so much for the update on Billy's journey, Amanda! I think he's a lucky kid to have you and Dave as his parents!

Hugs,
Wendy

Total 3 comments