Speech

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Communication – The Detours Connecting One Universe to Another

Published April 29, 2017 by Jen Rosado from MyAlternateUniv

Nothing frustrates me or gives me more anxiety on a journey between point A and point B than having my forward momentum slowed or stopped by the noisy, confusing gridlock of traffic.

So crazy it makes me that I often take the next available exit and try to feel my way through back roads and byways, guided by road signs, GPS, and even old-fashioned paper maps. Despite the traffic lights and stop signs, the slower speed limit and occasional wrong turn, a detour can be far less stressful to me than remaining stuck, mindlessly inching along, bumper-to-bumper on the jam-packed highway.

Inevitably, I arrive at my destination much later than expected, but eventually I do get there.

I imagine for the average child, learning to speak is much like traveling on a highway on a “good traffic day”; some children ride in the fast lane, others in a slower lane, but they hit their milestones and arrive at functional speech within a statistically average amount of time.

That journey can be quite different for a child with autism.

My son has spent much of his journey stuck in traffic, his brain overloaded with information from his senses – a confusing, noisy gridlock of signals that are difficult to filter and process properly. And a mind constantly distracted by the need to lessen overwhelming sensory stimuli (and the accompanying intense anxiety it creates) is a mind unavailable for learning.

We spent years wondering when, or if, he would ever learn to speak. Anytime we heard of a case of an autistic child learning to speak attributed to some new approach, we felt a resurgence of hope. Here was a new direction to try, a new mountain to climb with a world of possibility waiting on the other side. Maybe this was the magic detour that would help my son find his way!

But autism presents uniquely to each individual, so it should come as no surprise that what works for one person might not work for another.

Looking back, we tried many different techniques and therapies – some more helpful than others, some not helpful at all, and some helpful but not necessarily effective if presented too early – like pointing out a detour far ahead when our boy still hadn’t even found an exit off the congested highway. For a long while, it seemed he didn’t even notice us waving and shouting, trying to get his attention from the side of the road. He just wasn’t available for learning in those earlier days.

This universe is composed of small victories, not magical, overnight successes. Here, movement takes the form of baby steps, uneven and unbalanced – three steps forward then two steps back, with the occasional fall on the bottom. “Miracle breakthroughs” are the result of hard work – inches of slow, almost imperceptible progress made over days and months and years that eventually add up to a milestone.

But I’ve learned that hard fought battles make those small victories feel like miracles.

A few months before his sixth birthday, we finally heard our son speak. His voice was the most beautiful sound – a delicate, musical whisper, perfect in its imperfectness.

You might remember that my son’s “first” first word at 12 months was “clock”. Well, my son’s “second” first word at five and a half years old was…

The alphabet.

Not all at once, mind you. He started (obviously) with A, then B, C, and D, and on from there. He loved the alphabet song and capital and lowercase letters and the way they lined up side by side in straight, neat rows to form words. (A boy after my own heart, I must say).

It was then that I truly began to appreciate the amazing complexity of human communication. “Speaking” doesn’t always mean “communicating”. The alphabet is not a word that conveys meaning. Yet while the sounds he was making did not express a thought or need, he was actually communicating – by looking to me for approval or celebrating his accomplishment with claps and cheers. So indeed, through the alphabet, my son was interacting with his world.

 

 

The fact that he had learned the alphabet song offered a clue to the inner workings of our boy’s brain. We discovered that my son learned best when words were taught through songs or paired with visuals or sign language. Music, movement, and pictures were signposts guiding his brain through detours, like a GPS “recalculating” the route to get around the traffic jam on his neural highway.

Words popped out intermittently in the months that followed. He said “cup”, “bowl”, “cookie”, and “baby”, all accompanied by their correct signs, apparently stored in his memory banks after years of watching sign language videos from “Signing Time” and “Baby Einstein” over and over.

To our confused delight, he loudly sang, “Ha-So-Me-A-Toe” for weeks before performing the correct movements to indicate it was his personal rendition of “Head, Shoulders, Knees, and Toes”.

Then a few months after his sixth birthday, my son said his first meaningful word – “more”. Not some boring, monosyllabic, 2 second “more”, mind you, but a long, drawn out, sing-songy, “auditioning for the musical Oliver Twist” sort of “more”.

He used it in the correct context as a request and accompanied it with the correct sign. It was an exciting breakthrough!

So that’s it, right? I mean, once he says a word and understands the concept that saying a word as a request causes the big people around him to give him things he wants, that should be the key, the light bulb, the lightning bolt. Like Helen Keller’s sudden understanding of the word “water” signed in her palm at the water pump, surely this was the moment of connection from which all other words would flow.

That’s of course the idea we always had – that once our son made the connection between words and the world around him, more words would quickly follow. “Almost overnight,” people would joke, “he will be speaking in sentences, and you’ll be wishing for a moment of peace and quiet!”

But autism and language and human behavior are mysterious and complex. It’s as if our boy had arrived at his language milestone after a long detour only to find himself surrounded by a thick fog. For my son, processing the signals from the outside world, and even from within his own body, is not an easy task. Making that connection and formulating some kind of response, whether verbally or with signs or picture cards, requires a great deal of focus and concentration. It does not come easily.

Naturally, motivation becomes a big factor, because if you work really hard at something it helps to know you will be getting something really great in return. Otherwise, you’ll find an easier way to get what you want that doesn’t require as much effort. And therapists through the years have discovered something that we, his parents, already knew to be true – our boy is not motivated by many things. Food items hold little incentive for him, and toys only motivate him in their novelty.

The truth is, offering incentives to move forward in a thick fog may get him moving again on the road to communication, but his progress will always be slow. Even now, a year and a half after that word “more”, he’s still inching his way carefully through this confusing territory.

So while we continue to cheer our son on as he makes his slow and steady journey on the road to communication, we also try to lift the fog a bit and make the going easier. His speech sessions are paired with OT or PT, music is incorporated into his lessons, and his therapists are trialing different communication devices and programs to find the perfect match for his learning style.

We need to meet him where he’s at, drive at his pace, and guide him the rest of the way.

After all, in teaching my son to communicate we’re not just hoping to hear his voice, we’re hoping to understand his wants and needs and interests, to get to know all there is to know about the wonderful little person he is by building roads and finding detours to connect his universe to ours.

 

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Acceptance – What’s in a Label?

Published October 17, 2014 by Jen Rosado from MyAlternateUniv

I waited in line at the library, my two-year-old son on my hip and a book in my hand. The librarian smiled at me and glanced at my son as she scanned “Making Sense of Autistic Spectrum Disorders”, by James Coplan, into the computer. I wondered if she was thinking the same thing so many others had said aloud – “He doesn’t look like he has autism.”

But my husband and I had already been down that road. We had gotten past the denial pretty quickly once the clues fell into place. We knew he had autism.

Now the question was, where do we go from here? Naturally I started doing research, beginning with…

The Internet.

Ahh, the Internet. Before long, I was caught up in this expansive, bewildering, sticky web of information and misinformation. It was completely overwhelming.

I asked one of my son’s therapists if there was a good book about autism basics. She didn’t think such a book existed.

But at least one book DID exist. I found it at the library, one of just a few on the library’s “Autism” shelf. I returned it a few days later, having bought my own copy that I read cover to cover, marking up and bookmarking pages with post-it notes.

Dr. Coplan’s book was exactly what I had been looking for. It began with several case studies from his experience diagnosing and treating children with autism. Each case he described represented a different level on the autism spectrum, from low, to moderate, to “high functioning”. As I read the cases, I tried to imagine which child was most like my son.

I had assumed my son would be considered “high functioning”, which is also known as Asperger Syndrome. But reading the case study for Aspergers, I realized my son did not exactly fit the description. From what I read, children with Aspergers begin talking “on time”, sometimes early, developmentally. They are often precocious “little professors”, highly intelligent, but lacking in social awareness and skills. My son, although he had social skills deficits and appeared quite intelligent, did not have language at two years of age.

I often hear parents of children with special needs say they were given the worst-case scenario from the start and were determined to prove everyone wrong about their child. I encountered quite the opposite. One of the therapists who gave us the official diagnosis of autism was quick to reassure us that many children who start off on the spectrum end up fully integrated into the regular education classroom. “Sometimes we’ll check in on a child we haven’t see in years,” she said, “and, aside from a few quirks, you wouldn’t be able to tell the difference between them and their peers.”

Our son had many quirks and atypical behaviors, also called “stims” or self-stimulatory behaviors. (Simply put, self-stimulatory behaviors are repetitive behaviors like rocking, jumping, spinning, finger-flicking, etc. that satisfy a sensory or emotional need.)

He also wasn’t speaking.

“Not to worry,” we were told by friends and therapists alike. “When he’s ready he’ll wake up one morning and start talking in complete sentences! You’ll see!”

I imagined my son looking up from the tray on which he had smeared his dinner with his chubby little hands to announce, “I dare say, Mother, I am enjoying these peas ever so much. Please, may I have some more?” (Of course I also imagined this would be in the accent of a British schoolboy, with an air of intelligence and sophistication befitting a non-verbal toddler who suddenly speaks in full sentences.)

A part of me believed that, accent or not, my boy WOULD miraculously begin speaking some day. His behaviors would diminish and, with the right therapies, he would be considered “high-functioning”.

It was in this frame of mind that I read the chapter about Intensive Behavioral Interventions, including DTT – Discrete Trial Training (what our school calls DTI – Discrete Trial Instruction). Despite the fact that the child described in this case study was nearly a perfect match to my son, I was nonetheless convinced that my boy was “not that autistic”.

This particular example of a DTT session involved two therapists helping this little boy learn to respond to the command, “Sit!” When one therapist said, “Sit,” the other therapist would guide the child to the chair and gently sit him down. The child was rewarded with a treat or praise or tickles, after which he would jump out of the chair and return to his preferred activity. This was repeated until eventually the boy would come and sit down on his own when he heard the “Sit!” command.

To me, it sounded like training a dog, and I was not going to let someone teach my child in such a way. There had to be better methods.

DTT falls into the category of ABA (Applied Behavioral Analysis). I read the rest of the chapter about the types of ABA therapy that might be helpful for my son, but they sounded like incredibly boring ways to learn. As a teacher, I couldn’t wrap my head around the idea of teaching skills in such a rote fashion.

So my husband and I pursued other kinds of therapy. We took our son to a special gym for sensory integration with an Occupational Therapist. We requested speech therapy through Birth to Three. We even volunteered to be a case study for a graduate student’s thesis in exchange for free play therapy similar to Greenspan’s “Floor Time” approach.

All of these interventions were helpful. Our OT taught us techniques to address our son’s sensory processing disorder. The Speech Therapist introduced us to the Picture Exchange Communication System in hopes that our son would learn to use pictures to communicate. Play therapy made big improvements in our boy’s eye contact and engagement.

But something was missing. Things just weren’t clicking. As my son approached the age of three, he still could not imitate sounds or gestures. He still could not interact with others or play with toys appropriately. He was in constant motion – running, jumping, crashing. He seemed incapable of focusing on anything or anyone long enough to learn.

That was it. Our son wasn’t learning.

His baby book had a page where you fill in all your child’s “firsts” – first time he sat up, first time he ate solid food, first time he walked. My son’s page was blank after his first year. No first words. No first time he waved bye-bye. No first time he sang a song, drew a picture, went potty, made a friend. All blank.

I realized that I had been holding onto a hope that my son fell somewhere on the higher functioning end of the autism spectrum, because to even consider the idea of my son being “moderate” or “low” would somehow be “giving up”. After all, if I allowed myself to admit that possibility, wouldn’t that mean I was lowering my expectations of who he may become and what he may accomplish?

A month or so after my son started an integrated special education pre-school program I met with his teacher to discuss his progress. I listened quietly as she described my boy’s inability to sit in the morning circle with the other children, how his lack of receptive language made it impossible to follow directions, how all of his work was done with the hand-over-hand help of a teacher, how he wouldn’t stay in his chair long enough to complete a task.

I thought of the child in the book who needed to be taught how to sit. That WAS my child. My son needed to be taught HOW to sit, HOW to pay attention, HOW to imitate, HOW to learn. ABA therapy may have seemed an incredibly boring way for ME to learn, but it might be exactly what my son needed.

At the next official team meeting, my husband and I requested ABA therapy as well as a one-to-one paraprofessional to aid my son throughout his entire school day. Not surprisingly, his teachers had been considering the same route, and it wasn’t long before his program was changed to start meeting his needs.

His teacher kept me posted on new methods and ideas they were trying. They hired a paraprofessional who was trained in ABA, and she would be doing DTI with my son several times a day. Oh, and they had set up a special learning area for him in the supply closet.

OK, I know what you’re thinking. And, honestly, if you had told me five years ago that I would be supportive of my son being taught in a closet, I would have thought you were nuts. You should know that this was more like a small room, maybe 6ft by 8ft, with two doors, one for each preschool room on either side. In it they had placed a small, adaptive desk (with foot rests and a moveable work tray) and a chair for his para. Although it was a little cluttered with supplies, it was far less stimulating than the classroom. And though not perfect, it provided a quiet, calm environment in which he could focus without sensory overload.

One morning a few weeks later, I brought my son into the classroom at drop-off time. His para guided him through hanging up his coat and backpack, but instead of running around the room or heading for the radiator to line up all the magnetic letters my son did something amazing. He headed right for the closet door and pulled on the doorknob. “It’s not time yet, Buddy!” his teacher said, but he continued trying to get in. She opened the door and in he ran, right to his little desk. Positioning his feet on the footrests, he pulled the desktop to his chest and sat quietly, ready to learn.

It was clear – my son was learning. What’s more, he was ENJOYING learning.

I realized that this method may not be my style, but my son found the routine and predictability calming. It made sense to him.

I also realized that whether he was high or low functioning, it didn’t change the deep love I felt for my son, only the therapies we would seek to help him. So yes, the label served a purpose, but it didn’t define who he was. It didn’t predict his future.

Acknowledging where my son is on the autism spectrum at any moment in time doesn’t mean I’m giving up or lowering my expectations. It means I’m accepting him for the wonderful, amazing little person he truly is… just as he is.

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Works cited:
Coplan, James. “Making Sense of Autistic Spectrum Disorders”. Bantam
Books/Random House Publ. Group. New York, 2010.

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