Autism Doesn’t End Like That

Autism Doesn’t End Like That April 30, 2014

So much — and so little — can happen in 30 days.

The woods that spread out from our house are coming to life, with branches going from winter-bare to being covered in lush green. Spring is finally ushering its way in. I sat on our deck on April 2 – World Autism Day – devastated after a heartbreaking day of shocking news about you, and I watched you play. You swung back and forth on the hammock and jumped with abandon on our trampoline. The silence of our neighborhood was punctured by the happy noises of a you — a 13-year-old boy spinning beads and enjoying the evening spring breeze.

I was frozen. You were moving forward:

It seems fitting that on today, World Autism Day 2014, we have come to a point in our autism journey where the path has played a cruel, cruel trick on us. Where there seems to be no alternate route, where the road less traveled has seemingly dropped off into nothingness, and for once, I don’t have a game plan. Your grandmother tells me to find my strength and to move forward. But here and now, in this very moment, I don’t know how.

And yet you rock in the hammock, spinning your beads, making your beautiful sounds, soaking up the sun. What has changed? Everything. What has changed? Nothing.

For what’s it worth, we have a game plan now to deal with tidal wave that swept us out to sea. We have met with the doctors, and we have appointments set up to see other doctors at high-ranking specialty centers. We are going back and forth with your teachers on how best to support and help you. And, as always under the lead of your grandmothers and other family members, we have come together in faith to pray over you, read Surah Yaseen for you, and beseech Allah to have mercy upon you.

At times I marvel at how the days keep marching on, and we march on with it, one foot in front of the other. You go to school, come home and continue with home therapy. Cautiously we are bringing back the activities you seemed to like to do – swimming, outings to the park and more. Your sister and brother are running towards the end of the school year, and the endless notes home and volunteer activities just relentlessly keep coming.

There is no time to stop and dissolve into a puddle of anguish and despondency.

And, perhaps that’s a blessing.

Busy is good.

Overwhelming leaves no time for emotion.

Because when I drive you to school in the morning and leave you in the safe hands of your teachers and then go back and sit in my car, that is a dangerous time.

That is when I sit and breathe and think about things. And cry at the unfairness of it all. At the utter wrongness of your situation. That is when I say to Allah – I know You have a plan. I know there is something that will make sense out of all this. But in this moment, I just feel like the Universe got this wrong. This wasn’t supposed to happen.

A month has gone by, and here we are on your sister’s bed – you, me and Amal. She is reading a book, and you are burrowing yourself in her pillows, throwing your feet around. Hey, she cries, get your stinky feet out of my face!

You grin. You get it. This is part of that brother-sister dynamic. And in a few minutes, Hamza comes bounding upstairs to join in the chaos. At the risk of breaking the bed, all three of you get on with me in a mass of arms and legs, laughs and screams.

You look at me from under the pillow, and I search your eyes – the one that is clouded over and the one looking clearly at me. And I marvel at you.

You have conversations with Allah that I am not privy to.

This is why, day after day, you take me by the hand and lead me forward. And tonight the clock will tick and April will turn to May. Autism Awareness Month will be over, but you will still be you – because autism doesn’t end like that.

You make me, you break me, and you make me again. And I am better for it.

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