Back when I was a young mother and you were a tiny lobster of a baby in my arms, I did what any young mother does – I envisioned snapshots of your future. There were a few monumental milestone numbers I thought about – age five (kindergarten), 10 (when you’d hit double digits) and 17 (Would you have your license? Would we be one of those parents who would present you a car on this birthday? What colleges would you be applying to now?).
This morning I woke a little earlier than usual to bake the muffins you like for breakfast. I made your lunch and put it in your backpack, because although it is the heart of summer, you are in school. Not summer school, like so many high school students voluntarily take to knock out certain classes, but year-round school as dictated by your specialized autism school.
It’s what we fought for; it’s what we wanted for you. And, I’m pretty sure, it’s what you craved too – the familiarity and routine of the school schedule.
I went to your room and turned the noise machine off, pushed the curtains aside and lifted the blinds to flood your room with light. I removed the weighted blanket from off you, releasing your pressure-seeking limbs to feel the weightlessness of the day.
Salaamualikum D! Happy Birthday!
We stumble through the morning routine, you and I, silent and familiar with one another. I am tired from a rare late night out for local family wedding, and you are groggy as you always are when woken at 6:45-7 am to get your hustle on for school.
I urge you to chew the bites of your muffin – chew and swallow instead of holding it in your cheek. The clock is our common enemy and the bus is coming. You must eat, put your shoes on, take your meds, drink your water and don your backpack before I walk you to the bus.
I tell the bus driver – It’s D’s birthday! He’s 17 today! The driver and matron break out in big grins and wish you well. One of your classmates sits in the front seat behind the driver, most often dozing as he slumps forward against his harness. His hair always looks freshly washed and hurriedly combed. He’s maybe seven years younger then you by my guess.
If he’s awake, I always tell him hi! And, I hope you have a great day! He reminds me so much of you through the years that I am in danger of crying every morning from a weirdly painful heartache that is as much relief that you have come so far and pain that you have come so far. Most mornings I do cry.
But the tears are brief and the normalcy of what is our life propels me through. This is you. This is me. This is us. You are 17.
When you were three, after the agony and ache of your official autism diagnosis, which did little more than provide a name for all the confusion and silence and lack of understanding I was seeing in you, which did not answer the why’s and how’s on endless repeat in my mind, we reached a point when I got you enrolled in an autism preschool program and I met with your team to write your first IEP.
Individualized Education Plan. What the hell was that? I was a 28-year-old college-educated mother of two and utterly clueless as to how to help write a specialized curriculum for you. I mean, shouldn’t you be learning your ABC’s? Your 123’s? Your colors and days of the weeks? I remember your teacher and others crafting a hand-written document, and I added some suggestions and edits and signed on the dotted line. My main worry then was how do I convince you that I am not abandoning you? That when I put you on the bus in the morning as you wail and cry, that I am not abandoning you. I will be there in less than six hours to pick you up in my arms.
There are moments when I watch you interact with you brother and sister that I think – man, it can’t get better than this. There is a goofy hilarity, a sweet tenderness and a solid comradery between you three, the likes of which I haven’t seen anywhere. When things are good between you three, they are so, so good.
They ask you questions about whom you love more. You answer with a ya or na, switching your answer from time to time the way a big brother teases his younger siblings. Sometimes your sister will complain to me – D bhai is ignoring me! I asked him to give me a hug and he totally ignored me!
I respond back – what do you expect? You’re his annoying little sister. He’s a teenager. You think he’ll want to hug you on your command?
Two seconds later you walk past me and entwine your left arm in my right arm, our arms locking in a “bro hug” at the elbows. You started initiating this type of closeness, this type of hug, several months ago, and we encourage it as an awesome (and appropriate) form of male-bro affection. It’s your equivalent of a fist bump, or that quick bro-to-bro hug that guys do as they firmly pat each other on the backs.
MammaI Why is he hugging you when I just asked him to hug me? – your sister says to me. I look at you, and you briefly look into my eyes with a mischievous grin, knowing you are denying your sister what she is asking for and instead of giving it to me. A nonverbal exchange of sly humor. I’m dying of laughter on the inside.
There is no car presented to you on this, your seventeenth birthday. No eager sifting through mail from various colleges and universities addressed to you. No SAT preps. No summer job to earn some money or volunteer work. The mail brings Medicaid renewal forms and information about which Managed Care group we can choose for you for the coming year.
There is no summer tour of prospective colleges, no trip to the DMV to get your license. There is, however, a lot of worry and thought (on my part) about what will your post-secondary future will look like. How will your day be organized? What kind of support services can we set up for you when you are out of school? What do we need to work on with you to help you achieve as much independency and autonomy over your body and your life?
What are the myriad of things we must accomplish in the coming year before you turn 18 to help you on your path to adulthood? Autism Adulthood.
This is where we are as a family. And that’s ok. I mean, it’s ok and it’s not ok. It’s the bittersweet. But it’s where we are, it’s where you are. And, what matters most in this very moment is you and only you.
So, the cars and colleges don’t matter. I’ll take seeing a smile on your face in the swimming pool followed by a good biryani dinner that I’m pretty sure you’ll relish with that gusto you have for a good plate of biryani. I’ll take a bro-hug, if you are willing to give it. I’m very much willing to smother you in kisses, if you’ll let me.
And, what I think you know better than any of us is that it was never about the birthday milestones, the things that other 17-year-olds may or may not be doing. It’s always been about the respect, care and love shared between us, between you and the world. That’s always been your gift to everyone.
Happy birthday, D.