My daughter has autism. Or she is autistic. I’m really not sure which way I like to say it yet. I’ve only known for a month and the words still feel heavy and foreign in my mouth, yet familiar because really I’ve know for the last two years and seven months since she’s been born. So I guess that makes me a special needs mom, which is also a foreign concept that leaves me confused about how we are here because I don’t remember signing up for this. Or being prepared for this. Or wanting this, but I suppose it’s not really a thing anyone wants.
Level 1 Autism with no cognitive delays was the official diagnosis, which really just means she’s high functioning. I guess I’m supposed to take comfort in the fact that she is high functioning, and I do, some. If this is the struggle, pain, and helplessness of mild autism surely I am not cut out to mother a child with severe autism. That is a life I could not even fathom and have nothing but the utmost respect for. But, the fact that it could always be worse is rarely comforting.
We’re still in the process of determining next steps, both with therapy and our lives. It’s not something I want to hide. It’s not something we really could hide. Isla is a vibrant, lively, fun- loving girl, but she’s quirky, no doubt about it.
What I’m dreading and avoiding is the telling. I want people to just know without me making a formal announcement. A social media announcement seems so attention seeking, yet also the most concise way to get the information to family and close friends. I also don’t want to go on the Autism Tour telling everyone we know in person. I know people don’t know what to say because I don’t know what to say and I don’t want to have that conversation umpteen times.
She’s still the same girl she always was and so now the limbo of not treating her differently, while also treating her differently in every way begins. How do you make exceptions without making a fuss? I guess it is really more about training us to function in her world rather than the other way around.
The biggest challenge I see as her mom is to be her advocate without becoming Autism Mom. I don’t want this diagnosis to define our family, but I also want to champion her cause. I don’t want it to dominate every conversation we have in our house, but in reality it has since we brought her home. Now it just has a name instead of this weird tense, helpless energy.
I’m optimistic about what is ahead. I mean, what other choice is there? Now we know for sure what we’re dealing with and I’ve heard nothing but positive things about the therapy options, especially for high functioning kids.
In some ways I feel vindicated. I always felt like I had to work a hell of a lot harder to be Isla’s mom than other moms I knew and now I can say for sure that I was (and do).
I can honestly say that parenting a child with special needs before they are diagnosed with special needs is the hardest thing I’ve ever done, so life from here on out should pale in comparison. While I don’t doubt that there are still tough days ahead of us, I have to believe that our toughest days are behind us, because the last year and a half have been filled with some tough, tough days.
She’s still the same girl we always had, but now we will all get a little more help and this mama is welcoming it with open arms.