Easter Seals - an autism parent's best friend

Easter Seals has been a godsend of a resource for me ever since my older son's speech delay became apparent in 2007.

I initially contacted our local site and an evaluation was set up to take place in our home. Speech therapy, developmental therapy and occupational therapy were then arranged to take place in our home, at our convenience. They helped set up hearing and vision evaluations, as well as an appointment with a neurologist, who diagnosed him with PDD, or pervasive developmental disorder. (My family physician brother tells me this is a catch-all diagnosis when it's apparent that something is wrong, but the child doesn't exhibit enough symptoms of any one specific disorder to justify a diagnosis of autism, Asperger's, etc.)

When my younger son showed signs of speech delay at 18 months, I immediately called Easter Seals to have him evaluated. Our Easter Seals social worker arranged for him to be seen by one of the country's best pediatric neurologists at University of Illinois-Chicago, who diagnosed him with autism.

The therapies for both boys continued in our home until they each turned 3. Our therapists and Easter Seals advocate assisted with the transition to our local school district preschool.

We recently were informed by our school district (District 126 in Cook County, Illinois) that there is no self-contained special ed at the kindergarten level (my oldest is about to turn 5) and it was strongly suggested that both my boys attend a co-op in Midlothian, Illinois, effective as soon as possible. I was told I could see the school prior to my children attending. I was appalled at what I was shown. I was shown a kindergarten classroom with much lower-functioning children. (It was never explained to me why my preschooler would need to leave the special ed classroom in our neighborhood.) I understand my son has issues that need to be addressed, but where would the intellectual challenges be for his strengths? In tears, I called Easter Seals that day. Our social worker was more than happy to help me. She told me about several websites, most importantly one that shows the legal rights of special ed parents. A few weeks later I also heard from a parents' advocate from Easter Seals who gave me a wealth information over the phone, then sent me even more information through the mail.

I now have appointments in early March to look at some private schools that may be appropriate for my sons to attend. I requested a one-on-one aide for my 4-year-old for this semester and the special ed assistant director raved to me how much that is helping my son pay attention in class. (Side note: So why did it have to be my idea? It's sad it's all about the budget.) I also have the option to keep my 4-year-old at his current school once he becomes kindergarten age (5) with a one-on-one aide. I was never informed of these options until I got upset. Why does it have to come to that?

The most important bit of wisdom passed on to me from the parents' advocate at Easter Seals was this: It is the job of your doctor, therapists, social worker to look out for the best interests of your child. It's the school administration's job to look out for the best interests of their budget, so keep that in mind when suggestions are being made.