I’ve been concerned about my daughter’s development since about the time she turned 1. She wasn’t talking yet, not even “mama” or “dada.” By 18 months old it was clear she had a substantial speech delay, and we started seeking early intervention services. By 22 months old she still had no words, and was showing other strange behaviors, so I brought her to a special autism and developmental disorders diagnostic clinic. She underwent about 4 hours of testing and evaluation, including the ADOS. You’d think after all this I would be prepared for the diagnosis, but I wasn’t.
When the lead psychologist on the evaluation team came in and told me my daughter was being given an official diagnosis of Autism Spectrum Disorder, or ASD, I was initially calm. Hey, I thought, this isn’t really a surprise and it explains her delays and behaviors, plus it means it’s not my fault! But after a day or two, reality started to sink in. My kid was going to need 20 or more hours of intensive therapy every week, just to have a 50% chance of being able to function normally. My husband and I both work full time and love our jobs, plus if one of us quit we would need to give up the beautiful home we just bought 2 months ago (our first house!). So how are we going to make this work?!
But what hit me the hardest was the loss of dreams. No matter how much we know we shouldn’t, I think all parents dream about their children’s futures when they are babies and toddlers. What they might be when they grow up, what their favorite subject in school will be, what sports they’ll be good at, how many friends they will have. Both my husband and I had trouble making friends as kids and we were determined to make our home an awesome place for our daughter to invite friends over to play so that she would be well liked. Both of us are also gifted and good at math, and we figured our daughter would be too. Suddenly, all that went out the window. Our daughter will need special education services and have social difficulties. Our hopes and dreams now are on an entirely different level: we hope she will learn to talk. We hope she will learn to use a toilet. We hope she will complete high school and be able to get a job, any job. We hope she will someday be able to live on her own. Only time, and intensive therapies, will tell us how many of these hopes will come true. The one thing I know for sure is I still love her just as much as always, and she’ll always be my daughter.