The word autism entered my heart as a whisper. It later entered my brain as a possibility. Later still, it entered my life. I think I knew, long before I knew.
I worried, bought a book on autism, devoured it, and then felt like that must not be what my son has. He was nothing like the boy in the book. Nothing. “Maybe,” I thought, “he just has a language delay.”
I waited for him to start speaking more. For him to start playing in the way that he was supposed to play. He did play though, unlike the boy in the book, so certainly, his issues were different. Less “severe?”
Never mind that he had an egg-sized bruise on his forehead for six weeks at the age of 18 months from banging his head on the floor. As quickly as that behavior started, it went away. I stopped worrying about it. I mean, it no longer existed. Sure, he ran laps around the house. But only when he was tired. Don’t all kids do that? Don’t they all twirl their hair, around and around and around, while drinking a bottle?
I’ve mentioned before that parents and friends assured us that Tucker would catch up, and that his delays were likely due to me being at home with him as a baby.
They were wrong.
I was wrong.
I remember one day, when I looked at my son and with a fearful, time-stopping heart, I wondered whether he was deaf. He wasn’t responding to me that day. Then, I gave him a little at-home test, and he responded. I let myself believe that everything was fine. What did I know? I had no other child in the house to compare him to. He loves to snuggle, and, from what I’d read, autistic children do not. He looks at me in the eyes. Deeply. With meaning and intent. I’d already learned from Dr. Google that children with autism don’t make eye contact…
Here. Four years later. Does Tucker look like anything other than a little boy having fun in the snow?
Autism doesn’t look like anything but the way it looks. It doesn’t look like Rain Man. It doesn’t always include hand-flapping, rocking, or issues with language. Sometimes, it does. But, sometimes, it doesn’t.
Last night, I reached out to my IRL PAC-mom tribe.
I asked them what they wish the world knew about autism and special needs, and have put the below list together based on their feedback.
10 Things Special Needs and Autism Moms Wish You Knew:
- People don’t need to feel awkward when they’re around my son. Yeah, they may need to treat him a little differently, but I wish they wouldn’t be weirded out.
- Not all autism is the same.
- People seem to think that because my son isn’t like the one single other person they know on the spectrum, that he must not be autistic.
- These kids love. They need love. They are wonderful and bring enormous joy and laughter to those who love them.
- Knowing one child with autism doesn’t mean anything really – they’re all so different. Please don’t tell me my son doesn’t have it because he looks so different from the other kid you know on the spectrum.
- Kids with special needs are smart. Talented. Creative, and thoughtful. It may not be obvious all the time – their minds work differently.
- If my daughter is making strange noises, feel free to look. She’s just making them because she’s excited. Please don’t stand there and gape at us with your mouth hanging open.
- If you see my son in a grocery store, he may be head nuzzling, chewing on the corner of his shirt, or spinning. He’s anxious. I will not scold him, so please do not look at me as if I should. He can’t help how his body receives stimuli. He is trying to cope with the way his body is affected by his surroundings.
- From onlookers who think I am not addressing my child’s odd behaviors: I ask for a little empathy. Don’t judge. Try to understand that his environment strongly affects him.
- Please accept our kids the way that you assume we will accept yours.
I think I’m speaking for all of us when I say that what we really want you to know, what we’re screaming out loud, is that we, as mothers, are both terrified and brave.
Just like you.
That while our children may act differently from what you’re familiar with, they are our normals. That they’re full of emotion, fierce love, tender hearts, and hope.
Our special needs kids are here, on purpose, and OutLoud.
Even when they’re silent.
This has been a Finish the Sentence Friday post. Tonight’s sentence is “What I really want to scream out loud is… ” Next week, we’ve got “My favorite decade was…” If you participate, feel free to join our Facebook group.
Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I get another bottle of whine?
Stephanie: Mommy, for Real
Me (Kristi): Finding Ninee
Tonight’s special host (the sentence thinker-upper) is Tarana Saddiqi, from Sand in My Toes. Please show her some love.