Aug 252012

January 20, 2009 — Tonight I spoke to more than 100 women from our local Junior League. I am a parent volunteer at an Easter Seals center, and the staff asked me to share our family’s journey. This is an sensitive issue for me, so I had to write out my notes.

As the parent of a child who benefited from the services of the Easter Seals Rehabilitation Center, I am here to share a personal story.

When our only child arrived, I knew exactly nothing about the Easter Seals Rehabilitation Center. Our son was born in 1990 – a happy day as we had been trying to have a baby for more than six years.

Until about age two, our son was quite typical in his development with one exception. He had trouble holding his head up, and we worked with a physical therapist who gave us exercises to strengthen his neck muscles. He had a muscular issue called torticollis.

During that two-year period, our extended family added three other baby boys, so our son three cousins close to his age.

It was – and still is – difficult not to make the inevitable comparisons between these four young men.

When our son was about 18 months old, we visited my brother’s family in Iowa, and noticed that our nephew — who is three months younger than our son — was far ahead  in developmental milestones.

It was particularly striking because our nephew was born prematurely, was little for most of his first year, and then ran circles around our son.  Literally circles, because our child didn’t  take his first step until he was fifteen months old, and then his gait was very awkward.

Viewing our nephew’s progress shook us up a bit – overprotective first time parents that we were – and we began to notice other things.

His basic language skills just stopped..
He was obsessed with small toys, like Toddle Tots, which he felt compelled to hold most of the time.
He looked at ceiling fans and lights with unusual fascination.
Loud noises upset him.
He had poor or no eye contract.
In daycare he screamed often and didn’t relate to the other children, and didn’t nap at all.
At Weinbach’s Cafeteria, he became so agitated because I had forgotten his Sippy cup that we had to leave.
At the old Opryland theme park in Nashville, our son played in  tub of colorful, plastic balls. While no other children waited for the tub,   the attendant made our son  get out after 3 or 4 minutes. Our son could not understand why he had to get out. Any two-year old might throw a fit under those circumstances. This tantrum lasted as we left the park and for the whole ride home, an awful  two and  half hours. Nothing could console him, and finally he slept.

People would often look at us in public — were they thinking:

Are you beating him?
What’s wrong with you as a parent? Was Son deaf?
What was wrong with him?
Why wasn’t he like his cousins or other children?

Our family doctor, after we expressed concerns, told me that I was a nervous, “older” mother and should “get over it.”

We were frustrated and did not know what to do. We studied  everything we could get our hands on about developmental milestones.   Until I read about it, I had never even heard of autism. This was sixteen years ago and autism just was not as known as it is today.

We changed family doctors. We changed to Dr. Melinda Jackson who has cared for our family ever since. On our son’s first visit, Dr. Jackson referred us to the Easter Seals Rehabilitation Center. She thought our son needed an evaluation.

He received a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). This is medical jargon for the “A” word — autism. The clinicians were also quite unsure of his academic outcome – it was too early to assess intelligence, and there was a chance he could be moderately or even severely developmentally delayed.

We were devastated.

He started physical, occupational, and speech therapy several times a week at the Rehab Center. We took  a class for parenting special needs children and worked  with a psychologist. Both were quite helpful.

Since our son had trouble both in understanding and using words – called receptive andexpressive aphasia – the therapists had challenges. Little by little, inch by inch, our son made tremendous progress between the ages of two and five.

His speech therapist worked  on a communications “system” that involved a book of symbols, and he could point to these basic symbols and tell us his wants or needs, such a snack or bathroom.
The  occupational therapist worked on sensory issues – at times we had to use a brush on his  arms which would raise his awareness of textures and touch. The OT also worked on very basic skills such as dressing, taking off and putting on a sweatshirt, or appropriately using silverware.
The physical therapist addressed his basic clumsiness, walking correctly, jumping and skipping which comes naturally to most children.

At three, our son was ready to attend Easter Seals Therapeutic Pre-school. I cannot underscore enough what a fantastic experience being in pre-school was for him and how much he improved. Interacting with the other children was a essential part of this growth – and all the activities were geared around improvements in function.

Watching our son and the other children in the pre-school was a huge lesson for us.

We had been totally devastated a year earlier upon getting the big “A” diagnosis for our son. We had not yet learned how truly blessed we are.

In his pre-school class, there were several severely disabled children who had significantly greater challenges and fewer support systems or resources.

This is not something you could have told us at the time of his diagnosis, but we witnessed firsthand the determination of these children and their parents.

We celebrated a child’s birthday who took parenteral nutrition through a feeding tube. On her fourth birthday, her mother brought in birthday cake and ice cream for everyone. This lovely little girl could never taste the buttery-yellow cake and cold ice cream all the other children – including mine – enjoyed as all four-year-olds do.

I am not minimizing my son’s unique challenges – but my point is that the programs at Easter Seals help children of all abilities achieve the greatest level of functioning and a great start in life.

This comprehensive approach works with non-disabled children as well, and this is the philosophy behind the Milestones Children’s Center which opened after our son left services at Easter Seals.

For children of all abilities to have interactions with other children offers teachable moments for a lifetime of compassion and caring to others.

Our son thrived in  Therapeutic Pre-school and reached his developmental milestones, albeit late.

He began to talk at age four – later he told me once that he could read before he could talk. You might be interested to what his first words were. He never said, “Mama” or “Dada” – no, while in the cart at Sam’s Club he pointed to the credit card signs at the end of the register and said, “Discover, American Express, VISA, and Master Card.”

At pre-school graduation, Son stood up in front of everyone in his little green cardboard graduation hat and said clearly, “My name is ____ and I’m going to kindergarten at Chandler Elementary School.”

A remarkable moment, for a child who had only learned to speak eighteen months before.

He stayed in special education classes until second grade and received speech therapy services from the Gibson-Pike-Warrick ooperative until fourth grade.

One of the terrible ironies of leaving special education for the classroom with typically developing students was that he was placed back in his home school.

For a child who has difficulty with change, this was a huge challenge, and complicated by the fact that in addition to his autism, Son developed Tourette’s Syndrome at age nine. His Tourette’s is now almost completely under control.

We finally came to believe that Son most likely has Asperger’s Syndrome, named for Hans Asperger, who describes this syndrome affecting more high-functioning persons. Our does not have academic challenges. He did well in high school and became a typical teenager – enough to regularly annoy his dismayed parents with sleeping too much, having a messy room, and playing too frequently on the Internet.

But this story has a very happy ending. Our son is now a freshman in college. When he was two, we weren’t sure if he would ever go to college. He is a freshman and is doing well. He has come a long way thanks to the many caring therapists and educators who made such a personal difference. I hope you will continue your support of this wonderful community resource, the Easter Seals Rehabilitation Center. Thank you.

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