I am crying. There was a time when it seemed I did that a lot. Too much, perhaps. More than I knew I even could. Those were the early days. That was when my pediatrician first confirmed my armchair diagnosis that my son, Will, then just shy of two years old, had autism.
Today I’m crying because as I sit here, trying to write something uplifting and inspiring for Autism Awareness Month, what I’m really thinking about is the fact that, in my home, it’s Autism Awareness Day every single day, and it has been for over five years now. I’m crying because I wish I could just think about autism once a year and write a check and wear a ribbon and do a walk and feel good about that and then get back to my daily life. Because that’s how it’s supposed to be. Because that’s what people do. Because this wasn’t supposed to happen to my son. But it did.
And because it did happen, because Will does have autism, it truly is Autism Awareness Day every day of our lives. We go to the market, and I end up talking about autism with the checker when she tries to ask Will, who is pre-verbal, a question and gets no response. We go to the doctor, and when a child tries to engage Will and feels rejected by his lack of interest, I explain autism to an 8-year-old. We go out to lunch, and when a stranger makes a snide comment about my unruly child who did nothing but make some odd noises, I am a walking, talking, breathing, Public Service Announcement for autism.
So today, I sit here writing about autism, and I’m crying because I could write all day and all night and all week and all month and still not be done talking about autism. I probably never will be. So, while I accept that I am a different parent than the one I set out to be; while I accept that I am a special-needs mom; while I celebrate every milestone and accomplishment and baby step; while I love and enjoy and adore my smart, funny, amazing kid; while I willingly became a public advocate for children with disabilities; while I freely give my time to educate, train, and inform educators, therapists, and other professionals; and while I regularly spend my time supporting and informing parents of newly diagnosed children and helping them access the resources they need, I simply refuse to say that this is the life I wanted. I refuse to tie this up with a bow and say I’m remotely grateful for Will’s autism because it somehow brought me to my destiny in life or any such thing.
Here’s the truth: No one wants any child to have autism. No one wants to be a special-needs parent, no matter how well s/he may end up doing it. This month, as we take time to shine a spotlight on autism, you may read a great many wonderful, inspiring stories about kids with autism who grew up to become physicists and teachers, who were non-communicative until they were given iPads, who never spoke a word until suddenly, one day, they did. This is not that article. Those are important awareness pieces, and they’re articles I truly hope you’ll take the time to read. But this one? This one is mine, and my son isn’t grown yet. His story isn’t finished. So all I can tell you is how it looks from the trenches:
Will is seven and he eats jars of Stage 3 Gerber Baby Food every day.
Will doesn’t speak functionally, but he does say a few understandable words now and then.
Will has an exceptionally high pain threshold and an inability to articulate his needs or respond to unusual demands. This means we end up in the ER at least once a year. Sometimes twice.
Will has no concept of money or durability, so when he broke a window and an iPod in the same week, he had no idea why I was so upset.
Our state legislature, insurance company, and school district all point their fingers at one another when asked to provide services, therapies, or communication devices for my son, which ultimately means our family pays for those things out of pocket.
If we don’t do something about this epidemic soon, fund early intervention, and really make a change, we’ll have an entire generation of adults who are unable to live independently.
I love my son the same way I love my daughter – with that consuming, visceral, whole body love that only parents know. I am tough and strong, informed and educated, determined and positive about Will’s autism. But I do still cry some days, because I never wanted this for my child, my family, or myself. That’s what life is like when it’s always Autism Awareness Day.
Wondering what to engrave on a medical ID for a child with autism? Will’s bracelet looks like this:
Will Cohen – Autism
GFCF – nonvrbl
Mom (phone number)
Dad (phone number)
Dr (phone number)
Tara Cohen is a professional writer, Internet marketing consultant, autism advocate, and mom of two. She and her kids all wear Lauren’s Hope medical ID bracelets, and she recently joined our marketing team. You can reach Tara at firstname.lastname@example.org or check her out online at http://about.me/taracohen.