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The Heavy and the Light

The Heavy and the Light

Last updated on: February 4, 2015 at 1:38 pm by Dilshad Ali

The Heavy and the Light 2015-02-04T13:38:53-04:00 Dilshad Ali

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Cuddling with D

The car line at my son’s autism school can be an emotional roller coaster. I see kids who I’ve known years, and it touches me to see them grow into gangly limbs and teenage faces with downy hair and budding self-confidence. Some clutch favorite teddy bears or finger pieces of string – stims or habits that I’ve seen persist from childhood into the teenage years, long past when others deem them appropriate behaviors or interests.

But this is autism. Appropriate is a subjective word, and what may bring joy or comfort to an autistic 14-year-old may be entirely different than what other 14-year-olds like.

Often I’m running a few minutes late, and by the time I get there the majority of kids are gone, with the only ones left being those whose parents are late like me, or those who are having a more difficult transition to the car. A few days ago I pulled in and two cars were idling in front of me as two teachers sat with a girl on the ground in front of the school. She was refusing to get up.

It was the heavy pressing down upon all of us.

She was clearly in distress, repeating a phrase over and over, not willing to budge. As the teachers patiently tried to convince her to move towards her car, she inflicted injury upon herself and grew more upset. I caught the eye of one of the teachers as I entered into the school to get my own son, and we exchanged one of those looks that spoke of a thousand emotions, a million heartbreaks and the most universal of all statements – let it be better.

I don’t know anything about this girl. I won’t divulge the snap judgment I passed on the woman who was impatiently texting and waiting for girl to sit in the car so they could leave (someone hired by the county to drive her, from what I could surmise). I just want it to be better. For her, for my son. I want more light. Less heavy.

……….

The family has gone away for the weekend. A small weekend-trip to break up the monotony and busyness of the work and school schedule. I’ve been slammed at work, and I just want us to get away for a long weekend, my husband tells me. Now the elephant in the room – do we take D with us? It’s not a very D-friendly trip being planned. Does D stay home, and if so, with who?

I tell him that I’m not ready to leave D with caregivers. I’ve never done that before – left him in the care of someone who is not family for more than a day. Will you ever be ready? my husband asks. It’s a fair question. Somehow, I have to get ready. This is a long life, Insha’Allah (God willing), that we will live, and there will be times when we’ll go away and D won’t come with us. Maybe he’ll move out of our home when he grows older, live with someone else who can help support him. If you ask me right now, I’d say hell no.

But maybe he’ll want to. Who knows?

But for now, no. I’m not ready. So we decide to do what we’ve done so many times in the past – divide and conquer. He takes our younger two off for a fun weekend, and I stay home with D.

It’s a pretty nice weekend, actually. Time spent alone with D in the comfort of our home is rare. Our life is full, chaotic, stressful and busy – seven people living in and out of each other’s lives, with care givers and therapists walking into our home through a seemingly revolving door. But now it’s just me and D. And I can’t stop thinking. And worrying about the future. I post this on Facebook:

I spent a lot of time alone with D today. Thought about a lot of things. Time spent reflecting on all that has happened from when he was a baby until now. Struggled with my no regrets resolve.

Three thoughts: I have to foster greater independence and self-care in him, I have to learn to let go and I have to live forever or at least be super fit and healthy to go the distance with him.

Soon enough the weekend is over, and my husband and kids come home. Routines pick up again and once again I am hustling the kids off to school and dropping D off. After walking him inside, I go back and sit in my car. I’ve trusted the world so often to do right by him. I send him to school, trust his therapists to take him on outings and sent him off the bus for nine years – each time knowing that he could never tell me how his day was, what happened or if anyone wronged him.

Each day it is a gamble. Sometimes we win, sometimes he loses. Some days are so heavy. Some days blissfully light. I post this:

At times I wonder how one can understand, really understand a life lived loving one with such vast special needs. Or more importantly – the life that person lives them self. I am as close to D as one can be, and yet I’ll never fully know.

This weekend I spent a lot of alone time with my son away from the sound and fury of the world. Away from the religious discord. A lot of time reflecting, regretting, marveling at what is, thinking about who I am now, wondering about all my kids’ futures and thinking about autism and faith.

Sometimes D and I were roommates living on different levels in the same home, sometimes I was just a presence in whatever room he was – just wanting him to know I was close by. And then there were the times when he chose to be so close, so present with me. And that, if anything, is what I want you to get out of this journey.

When we choose to be so close, so present with each other, well you can’t imagine how much love there is. So this autism life can be so damn hard for D and for his loved ones. Let me not sugarcoat it. So, so hard. But D knows to choose love. We just have to figure out how to see it, receive it and reciprocate it.

And that’s it.

……….

Someday, God willing, A and H will go to college. They’ll get jobs, move out, get married – you know, a mother’s trifecta. But D? Well, I don’t want to stifle his future, dream small. But we have to be practical. Have faith, but tie our camel. In the midst of all this contemplating, a friend, someone I look up to in our local autism community, someone who has paved the way by helping her son navigate his way to a fulfilling adult life, posts this:

We have some BIG news. S is moving into his own apartment.

Am I ready? No.

Is S ready? No.

How do we know the time is right? Consider:

Housing voucher waiting lists were closed and have been for years. And then, S received one of 32 housing vouchers that were made available in the state as a result of the Department of Justice Settlement Agreement. This makes it financially feasible for him to live on his own.

While ringing our hands over the quality of housing available with a voucher, a duplex became available in OUR neighborhood on the SAME Street that S’s brother, sister-in-law, and cousins both live.

When asked if she would be willing to accept the voucher, the landlord shared that she had fostered a young woman with a developmental disability in New Mexico and would be “honored” to have Sam live in her property.

When told S was moving in, the downstairs tenants shared that they grew up with an uncle w/ Down Syndrome and would be “honored” to get to know S.

When a support person was needed to live with S, his cousin from FL volunteered that he would be happy to support Sam.

I’m sorry but this stuff doesn’t just happen. How could we choose NOT to do this now?

God has made a way for S and for us … always in all ways. We are so grateful and humbled.

And so this journey continues …

And there it is – right there when I need it most. The light, alleviating the heavy.

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