January 20, 2009

My Speech

This evening I spoke to more than 100 women members of our local Junior League. I am a parent volunteer at our Easter Seals, and the staff asked me to share our family's journey. This is an emotional topic for me, so I had to write out my notes.

As the parent of a child who greatly 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 absolutely nothing about the Easter Seals Rehabilitation Center. Our son was born in 1990 – a happy day for my husband and me. We had been trying to have a baby for nearly seven years.

Until about age two, Son was fairly normal in his development with one exception. He had difficulty holding his head up, and we worked with a physical therapist who gave us exercises to strengthen his neck muscles.

During that two-year period, our extended family added three other baby boys, so Son had three cousins close to his age. It was – and still is – difficult not to make the inevitable comparisons between these four young men.

When Son was about eighteen months, we visited my brother’s family in Iowa, and noticed that our nephew, three months younger than Son, seemed to be leaps and bounds ahead of our child in developmental milestones. It was particularly noticeable because our nephew was born prematurely, was tiny for most of his first year, and then ran circles around Son. Literally circles, because Son didn’t even take his first step until he was eighteen months old, and was extremely awkward.

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

* Son had some basic language skills which just stopped.
* He became obsessed with certain toys, like Toddle Tots. In every picture from that time, he is clutching a Toddle Tot in his hands.
* He also was obsessed with ceiling fans and lights.
* Loud noises really upset him.
* He wouldn’t look you in the eye, poor or no eye contact.
* In day care he was so frustrated he screamed almost all day long and would not relate to the other children at all.
* One evening we went to a cafeteria and he became so agitated because I had forgotten his favorite Sippy Cup and we had to leave.
* Similar experience at a Nashville, TN, theme park. Son was in the giant tub of colorful, plastic balls and even though no other children were waiting or even in the tub with him, the attendant made him get out after 3 or 4 minutes. He could not understand why he had to get out. Any two-year old might throw a fit under those circumstances. This one lasted as we left the park and for the entire ride home, a very long two and a half hours. Nothing could console him. Finally he fell asleep.

At those times people would look at us as if to say, why can’t you control your child?

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 our concerns, told me that I was a nervous, “older” mother and should “get over it.” We were very frustrated and did not know where to turn. Husband and I started reading everything we could get our hands on about developmental milestones. During this time that I first read about the “A” word – autism. Until I read about it, I had never even heard of autism. This was sixteen years ago and autism just wasn’t as known as it is today.

We decided to change family doctors. We changed to Dr. M J who has cared for our family ever since. Dr. M J, at Son’s first visit, referred us to the Easter Seals Rehabilitation Center. Doc was well schooled in the services provided and thought Son should be evaluated.

Son received a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified. This is medical jargon for the “A” word -- autism. The clinicians were also quite uncertain of his academic outcome – it was too early to measure intelligence, and there was a chance he could be moderately or even severely developmentally delayed. We were devastated.

Son began physical, occupational, and speech therapy several times a week at the Rehab Center. We were also given the opportunity as parents to take a class for parenting special needs children and to work with a psychologist. Both were quite helpful.

Since Son had difficulty both in understanding and using language – called receptive and expressive aphasia – the therapists had some challenges. But little by little, he made huge progress between the ages of two and five.

* The speech therapist worked with Son 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 Son’s arm which would heighten his awareness of things around him. She 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, and things like walking correctly, jumping and skipping which comes naturally to most children.

By the time Son was three he was ready to attend the Therapeutic Pre-school. I cannot underscore enough what a tremendous experience being in pre-school was for Son and how much he improved. Interacting with the other children was a critical part of this growth – and all the activities were geared around improvements in function.

Son being in the pre-school was also a huge lesson for Husband and me. 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 Son’s pre-school class, there were several severely disabled children who had far greater challenges and fewer support systems or resources. This is not something you could have told us at the time Son was diagnosed, but we witnessed firsthand the tenacity of these children and their parents.

I particularly remember celebrating a child’s birthday who took nutrition through a feeding tube. On her fourth birthday, her mother brought a birthday cake and ice cream in for everyone. That child would never taste the cake and ice cream all the other children – including mine – enjoyed as all four-year-olds do.

I am not minimizing my son’s own 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. Of course, this inclusive attitude works with non-disabled children as well, and this is the thinking behind the Milestones Children’s Center which opened after Son left services. For children of all abilities to have interactions with other children offers teachable moments for a lifetime of compassion and caring to others.

Off my soapbox. Our son Son thrived in the Therapeutic Pre-school and reached his developmental milestones, albeit late. He began to talk at age four – 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 XXXXX and I’m going to kindergarten at XXXXX Elementary School.” A remarkable moment, for a child who had only learned to speak eighteen months before.

Son stayed in special education classes until second grade and received speech therapy services from the Cooperative until fourth grade. One of the ironies of leaving special education 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 eventually came to understand that Son most likely has Asperger’s Syndrome, named for Hans Asperger, who describes this syndrome affecting more high-functioning persons. Son does not have academic challenges. He did well in high school and became a typical teenager – enough to often annoy his dismayed parents with sleeping too much, having a messy room, and chatting too much 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 certain if he would ever get to college. Son is a freshman at a great college in a major city 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.

Quoth the raven.