Why I Participate in AGRE

Family photo of AGRE participants

When my sons (2 and 4 years old at the time) were first diagnosed it was a nightmare. I had a baby and two very disabled toddlers on my hands. Once they were diagnosed, a flood of early intervention and advocacy services came to our door. This was a huge relief to me and my husband. Up to that point we had been struggling to make the medical community understand that there was something wrong with the boys. Kyle (husband) and I were very happy when AGRE offered to draw blood and at our information to their database. The more good people working on this devastating disease the better we say! So with three children in diapers we began our long journey one day at a time.

Joseph and Benjamin revolved around their little sister, Alyssa, from the beginning. Without her I think they would have been much slower to emerge from their autistic world. The first real smile we ever saw from Ben was mirrored by Alyssa, who made up fun games for both boys that lured them away from wherever they go when they are not with us and retreat to that land of autism in their minds. They are 12, 10, and 9 years old respectively now and the big brothers still dote on their little sister. Many siblings of their age group would probably be fighting more often than not but that does not happen in our house much. Mostly Kyle and I have to calm down hysterical giggling, dry tears over a broken play thing, and make sure our three charges are as happy and safe as they can be.

Alyssa seemed to be typically developing in every way until 1st Grade. I began to notice some mild texture sensitivities and her letters were in mirror writing, especially if she was stressed at all. The teachers thought it was just a phase and it would pass. Slowly, over the last 2 years, she has been left behind her peer group’s emotional/social development and become isolated on the playground and in class. She will no longer wear certain clothes, and I have to cut the tags out of the ones she will wear. The school began her autism screening a few months ago and we recently got the positive results back. It looks like she will land in the Asperger’s range of things and will now get some help in school for this disorder. Her brief IQ test came back at 130! The hardest thing for her is the isolation. She wants to play and have friends and is very hurt when her classmates refuse to play with her.

There are many physical symptoms to all forms of autism that make the children suffer in some way. I believe it is the emotional traumas that hurt the worst though. How do you tell a 9 year old that she is different and there is nothing you can do to fix it? We teach her how to cope one day at a time…

Janet Seidlitz