I still remember how nervous I was. My sweet, precious baby boy was off to his first day of preschool. You see, he had stayed at home with me for the previous four years, and it wasn’t easy to let go. It was even more difficult for me, I believe, than other parents in the same circumstance. And that is where our story begins.

Ed was born at 35 weeks gestation, or 5 weeks prematurely. In spite of this, he was, thankfully, a healthy, happy baby. He hit most of his developmental milestones on time, except for speech. I had also noticed that he didn’t seem interested in other toddlers as he grew older. There were other things, too. He seemed unusually bright, and was able to accomplish mathematical tasks way beyond his precious years. He also insisted on carrying a calculator with him everywhere he went, which was actually a convenience for me, especially at the store! I brought my concerns about his speech development to his Pediatrician, who shared them. Together we agreed if there was no progress in his speech development by the age of 21 months, she would make a referral to Early Intervention (EI), which was what eventually occurred.

Several people took part in evaluating Ed—a speech therapist, occupational therapist, developmental therapist, any kind of therapist one could imagine. I myself have a Master’s degree in Child Development (that has turned out to be so convenient!) and together we put together a picture of Ed’s strengths and challenges. I secretly harbored a horrible, nagging fear Ed had Autism, but the thought of it made me physically ill, so I looked for any signs on his part that he did not have Autism. He was happy. He made eye contact. He slept well, ate well (though that has changed, thanks to Frito’s and similar culinary culprits). I queried every professional who evaluated Ed, and asked them if this could be Autism, but everyone had the same answer…no. This isn’t what Autism looks like. I at once felt relieved, but still uneasy. I think my head already knew what was going on, but my heart just wasn’t there yet.

Ed received speech and developmental therapy until he was three, the age at which EI children transition into the school system. Ed began to speak when he was two, and he was making great progress, but as a former Early Childhood Educator, I was concerned he would have difficulty getting his needs met among a group of children with his emerging, but still limited, language abilities, so I decided to continue working with him at home for another year, and place him in preschool when he was four.

And now we are back where the story began, with all my nervousness. It turned out to be well-founded. After a series of unpleasant encounters with his preschool teacher and other staff members at his private preschool regarding his “unsafe and out of control” behaviors, my husband and I were asked to withdraw Ed from school until he could be professionally evaluated. I was devastated. What was going on with this kid? He was fine at home—a little quirky, a bit of a loner, but he also had the best laugh and was always such great company for me, as my husband travels frequently for his job. Nonetheless, I was forced to again face the fear that something was going on with Ed, and we had to find out what it was.

More observations, more tests. I still remember my husband Rick and I sitting in a room with a school social worker at the local public early childhood program where these evaluations take place, while Ed was in an adjacent room being put through his paces. I don’t think 5 minutes went by before the school psychologist popped his head in the room and asked the school social worker if she had any screening forms for Asperger’s Syndrome. And the tears flowed. Not tears of sorrow, mind you, at least not completely, but tears of relief, because we finally had a name for it. With that, we can start to treat it, right? Well, sort of.

Asperger’s Syndrome is an Autism Spectrum Disorder (ASD). As with any spectrum, one sees nuances, differences, varying degrees of presentation. So it is with kids with ASD. They are all so different from each other. No one treatment and/or intervention strategy works for all kids, there is no magic pill to take, and there are no guarantees or crystal balls that can predict their future. Having said that, we know so much more than we did even ten years ago, which is a very good thing considering the epidemic rate at which ASD has exploded on our scene. There is help out there for these kids, but it cannot be provided in isolation. As it took a team of family members, friends, and professionals to diagnose Ed, it has taken this same team of supporters and service providers to create the appropriate framework for him to work on his issues, develop necessary skills, and grow and learn like other kids; he just goes about it a little differently.

An important part of this team of supporters is Easter Seals. When Ed was diagnosed, one of the first things I did was to seek out a support group of other parents raising a child with ASD, which I found at Easter Seals. Through this organization, I have met and formed friendships with people I never would have otherwise encountered, and what a shame that would have been for me! I cannot imagine my life without the support and friendship I have received through my involvement with Easter Seals. After spending the better part of two years donating whatever time I could to help this wonderful and necessary organization, I was very flattered to be offered a position on the staff of The Autism Program, a program of Easter Seals. I now share my knowledge and experience about ASD with other families and care providers through trainings, support groups, social skills groups, and the provision of needed resources and information. I recently began working on another Master’s degree so I can provide even more needed support and expertise to our families, helping to guide and support them through their journey with ASD.

Our families frequently tell us how grateful they are for our existence and that there is no other agency that provides for their sometimes very desperate and critical needs. As both a parent and a professional in this field, I can attest first hand to the urgent necessity of the services Easter Seals provides to the community. And I am very proud to be a part of it all.

Oh, and by the way, Ed is doing great! He runs cross-country, swims, bowls in a league and has lots of other interests he enjoys. He has friends and likes being invited to play dates and birthday parties, as well as hosting a few himself. He’s finishing up second grade in a regular education classroom, with minimal supports. And I am no longer nervous about sending him to school.

Ann Bormett