Lessons in Autism Land – Less of the Doing, More of the Listening

This is Day 18 of the Ali Family #AutismTruths – April 18, 2017.

Dear D,

Teach me your ways, oh son of mine. Teach me how you wake up every morning when I call your name, push the heavy blankets off you and face your day.

There is never a Salaamualaikum, Mamma, or even a sleepy, mumbled ‘sup as you stumble down the hall into the bathroom. Just silence as you get up and get going with your day and your morning routine. Your sister slams her door shut to ready herself for school in private. Your little brother joins you in the boy’s bathroom, asking me random questions about the weather and what I have made for his lunch.

He groans if I say, jam sandwich, but cheers if I say, turkey bacon sandwich.

You never ask me what I have made for your lunch. You never request anything from me for your school lunch. You just (for the most part) eat whatever I’ve put in your lunchbox.

Of all my kids, you get ready the fastest, D. I think that’s because the routine is the same every morning, and you’re used to, maybe even appreciative of, my hustle. I also think God makes our memories falter for a reason, and I’m forgetting the years of difficulties I had with you in the mornings – getting up, you being upset, unpredictability in your moods and countless issues with morning transportation.

Which is all to say, shukr Alhamdullilah (thanks be to God), that the before-school mornings are better now. I am so appreciative of it.

But I wonder – what are you thinking? Do you ever wake up on the “wrong side of the bed?” I’m sure you do. I know, though, that I miss your signals sometimes. Do you ever wake up with a foggy head, or feeling the beginnings of a cold in your throat, or just not feeling it? I’m sure you do. How many times have I missed it, though?

You take it as it comes – a world that often doesn’t get your or doesn’t even try to get you. And yet, you take it, live in it and often carve your own path through it all. And, for all the challenges, hardships, crying jags, self-injury and meltdowns along the way, I’d argue that you have a remarkable way of getting up and walking your path with a positivity of acceptance that I often find lacking in me.

A few months ago, I was cleaning out some folders and files in your cabinet and found a treasure trough of old school pictures – you posed on a horse in preschool. You half-smiling, half looking dazed with lips just open and your new front teeth sticking out – so cute. You at age six, seven, eight, nine.

The sweetness, the innocence.

I started to cry – but these weren’t tears of nostalgia, of missing my baby who was growing up so fast in front of me. These were tears over what had been lost, of seeing that young face and thinking of what was to come in the next few years. Of looking at those clear, bright eyes and bitterly reflecting on some of the horrible injuries sustained in the years since.

These were tears of pity and self-pity. And, I don’t like to give pity or feel pitied.

I don’t want to feel sad when I look at your baby or kid pictures. I don’t want to look at your cousins who are taking A.P. classes, getting their learner’s permit, talking about colleges and reflect on what you are missing and how vastly different your journey is.

I don’t want to walk through life as the saddest happiest person, or the happiest sad person. That’s no way to live. It’s certainly not fair to all the brightness and awesomeness that you are.

I spoke to a friend – laid my grief at her feet and asked her — what can I do to not feel this way? She told me to write to you, write about your amazingness, your fortitude, your strength, your conviction, your ability to take on life like a boss. She told me to draw strength from that and look to you to lead the way.

My dear son, I have taken on the role of Mamma, protector, fighter, soother, discipliner, buffer, researcher, miracle demander, faith walker and teacher for you. But I think I need to stop focusing on the doing so much and start listening to you. To your sister, A and your brother H. In this autism journey of autism and family truths, I have so much to learn from you three – especially you.

Love,

Your Mamma