What every autism parent needs to know for a strong 2016 (The 5 Things I’d tell myself on NY 2015)

Number four


Yesterday, we kicked off our countdown to the big New Years’ surprise with #5: Get Thyself to a Counselor. Not because we’re unstable, but because it’s just good judgement to bolster your support when you carry extra weight. And all the better if that bolster happens to be someone specifically trained to pop out ideas for dealing with life problems.

Today, we move on to the next thing I would tell myself a year ago, which is…

#4: You are not alone.

Parenting a child with autism is extraordinary–both in great ways and in terrible ways. And sometimes that’s exactly the thing that makes you feel like you’re the only person on the planet who understands what it feels like to go higher than anyone else does, and what lows exist that average parents couldn’t dream up if they tried.

And it doesn’t help to talk about it, does it? Because when the words come out, they sound so normal.

“My son hardly slept last night.”

“No, don’t worry; I’ll bring food for her. She’s such a picky eater.”

It sounds like an average week for anyone. So, when you talk about it, you can practically see the pictures that emerge in their minds when you describe your child.

And that’s not it.

But what are you going to do? Clarify your point by giving all the disturbing details?

“Actually, no, what I meant by that is that he was up from 1-4 am. And then he was up for the day at 6. He screamed for the first hour like I was twisting his leg off. The second hour he just stared at me, teasing me, because I kept thinking he’d go to sleep. Then the third hour he wiggled out of my arms, and literally ran in a circle with a two-foot radius, humming and smacking his ears. I watched him and waited until he slowed to a walk and eventually collapsed on the floor in exhaustion. Then I had to wait for him to reach a certain stage in his REM cycle before I could pick him up and put him in bed, or he’d wake up and the whole thing would start over. And I’ve tried everything. I’ve seen doctors and sleep specialists and I’ve read books and ignored him and indulged him, and nothing changes. I literally feel like sleep deprivation is going to kill me. And I’m even more worried about my kid.”

Let’s be honest. It feels like more than most people want to know.

So you watch them nod in what they think is recognition. And they tell you their own story about how their infant got up three times last night, and this parenting thing is just hard, you know?

And if they’re thoughtful about it, they’ll say I’m sure it’s worse for you, Maura, but William’s doing so well. You can hardly tell anything’s wrong at all.

You know they mean well, but that “you can’t tell anything’s wrong” comment is the worst.

Because it means that the crises that overshadow everything else in your life, the struggle he faces every day that’s so much bigger than the other kids’, it’s not only this mammoth, crushing thing that makes him the bravest person you know–it’s completely invisible to others.

So, Past Maura. I want you to do something for me.

I want you to know that there are people who see your child. They see him, and they love him. And they love you, too.

And I want you to know that there is a fundamental difference between those people and the ones you run into at the grocery store, who you haven’t seen since college.

The ones at the grocery store, you can expect to say all the wrong things. Sometimes they don’t. Sometimes they say all the right things, and that’s when you schedule a coffee date, pronto. Because it sounds like someone you need to add to your inner circle.

But the others–the ones who know your little guy and hear your stories, the ones who have offered to do your laundry and bring you pizza–they’re your people.

And they will pray for you, with you. They will listen to every disturbing detail and cry with you when you don’t know what to do. They will surf Pinterest for craft ideas he’ll actually like when your kids have a playdate together. They will go with you to the hospital when you need peripheral diagnoses, and they’ll talk to you like a normal person who likes to shop online and do yoga.

You are NOT alone.

So when you start to think that you are, call one of those people. Maybe you feel like talking it out, but maybe you don’t. You don’t have to. Friends like that are friends whether you’re in crisis or not.

But what’s important is that you call. I know it’s hard to take that step, but Past Maura? It’s not enough to think about them.

Because you are alone until you’re not.

Get yourself some coffee with a friend.


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