I had it all planned out for my big November 1st “Autistics Speaking Day” post.
I was writing it in response to the movement by an Australian based organization, trying to get people to stay off Facebook and Twitter for 24 hours today, as a way of showing solidarity and support for those with autism.
I was going to write why I wasn’t going to be silent on this day. You know, I’m all for awareness of any type, but something about this just didn’t sit right with me. Part of that was about my ego – I just didn’t think that my Facebook friends and followers on Twitter would notice or even care if I was silent for a day. Contrary to what my husband thinks, I’m not on there all day long.
Then there was the staying silent part. My child is quite verbal, and we’ve worked really hard to improve his communication and social speech skills. Being quiet is contrary to that. And I’m guessing that my friends with non-verbal children would do anything to hear words. Any words. Most of them have moved heaven and earth to help their child communicate. Why would I stay silent to recognize that?
So I was going to use this space to tell you about my amazing son Howie. How at age four he looks to the outside world like every other four year old, but he’s not. We work incredibly hard every hour of every day to help him look that way. I was going to tell you that his teacher calls it a “dance” – most kids test their boundaries but are able to dance that line and pull back to appropriate behavior. My kid can’t. He has to be constantly reminded how to pull back, and if I let up at all, he dances gleefully across that line and we’re done. I was going to write about the hours of behavior therapy and occupational therapy we’ve been through to get us to the point where he can function in an inclusion classroom with an one-on-one aide and can finally draw a picture without a giant meltdown.
I was going to write about what autism is like in my house.
An e-mail. From an acquaintance. Her young child had just been diagnosed on the spectrum. On Wednesday. She had found my essays online and having nowhere else to turn, got in touch with me. She was devastated. Overwhelmed. Sad, confused, upset, bewildered…you name it. She had been blindsided. A routine checkup turned into something else.
I sent her my phone number. And we talked.
The words she spoke were so familiar. How did I miss this, she said. What am I not seeing? He talks, he makes some eye contact – how is he on the spectrum? No one sees this in him. My family and friends think the doctors are crazy. What did I do to cause this? Do I change his diet? Not vaccinate? Where will he go to school? How will I deal with therapists in my home all week? Will he have friends? What do I tell my other children? Will he ever be normal? And what the hell is ABA therapy?
She cried. I did too.
I know those questions all too well. We were asking the same ones almost a year ago ourselves. I know the grief of realizing your child might be different. I know how it feels when your world feels like it’s falling down around you.
I told her all that. With my words.
I told her I knew exactly what she was saying. I have grieved for the life I thought we might have with our son – the preschool class that I thought he’d attend, the family trips I thought we’d make. I have been in the position of explaining to family and friends why my son is different even though they can’t see it. I told her that I have been just as overwhelmed and guilt-ridden as she was. But I also told her that although it might be too soon to hear it, things can get easier. The earlier the interventions start, the better they work. I told her that my son has made remarkable improvements in the 8 months since his diagnosis thanks to his amazing teachers and great therapies.
I told her I was here for her whenever she needed to talk.
She said when she read my article it was like hearing her own words in her head. When she had no one else to turn to, she bravely reached out for a shoulder to cry on.
If I had remained silent, she would be feeling all alone.
So many kids are being diagnosed on the spectrum every day. So many parents are hearing the words “your child is autistic” for the first time. So many parents are feeling like they have no one who knows what they are going through.
If we aren’t talking, if we aren’t sharing OUR stories, how will anyone know that we understand? How will they know that we get it?
This is why I’m not going to be silent today. I need to talk. I need to share my story anywhere I can.
Because I also need to know that I’m not alone as well.
“Hush hush, keep it down now, voices carry
Hush hush, keep it down now, voices carry” – Voices Carry by Til Tuesday