Ali Family Autism Truths #29 – The Way to the Unknown Future

D at Short Pump_resizedApril 29, 2015 – Autism Awareness Month, Autism Truths #29

Most mornings are a mad rush of arms and legs, cereal bowls, packed lunches, backpacks and last minute signing of forms. Once I get the younger two out the door — either on the bus or with their Baba — I turn my attention to D,  who usually is up by the time and playing around, waiting to get ready for school.

I assist him quickly, using the time we have together to prompt him through his morning routine — teach him the steps to do it all (hopefully) by himself one day, without assistance from anyone. I wonder incessantly if we will reach that magical place at some point when he rolls out of bed and takes care of all his needs without help from anyone, like his sister has been doing since she was six or seven years old.

That is the ultimate goal. That, to us, would mean everything — for D to be able to independently look after himself with minimal or no assistance. Maybe I should aim higher, push harder, like I do with my other kids. But trust me. Pushing him towards these independent living skills is a huge, challenging, vastly important job. The most minor accomplishments along the journey are as important to me as any of the academic and other achievements of my other kids.

I worry though — will we get there? Some mornings, as we are in the bathroom getting ready for school, I stop and look at D. He is growing so, so fast. I feel that maternal blush of pride as well as pangs of apprehension and uncertainty as he climbs towards adulthood. There is the peach fuzz on his upper lip. He has that particular stink known to all teenage boys. And when we stand shoulder to shoulder and look at ourselves in the mirror, he is nearly as tall as me. I am no longer mother to “Lil D,” the boy I’ve been writing about the past four years.

I am mother to D, a handsome, maturing young man. A young man fast approaching a vague, uncertain future where I cannot, nor should I, hold onto him as tightly as I do now. He needs us all now, as much as we ever did. But how much do I need him? How much is my identity wrapped up in his? And am I pushing him, teaching, helping him gain as much independent living skills as possible? Is it enough? Will it ever be enough? Will we get to a place where there is more self-reliance than reliance on others?

If not, then how will D’s future unfold?

……….

On a plane recently when I was flying to Chicago, I was scrolling through my Facebook feed when I happened upon an article written by a young man who worked for some time as a companion and caregiver to a young adult with autism. I started reading it, and the tears started flowing. They called for us to shut down our electronic devices, and I rapidly finished the piece and saved it so I could revisit it another day.

The piece was hurtful to read and honest – raw in its descriptions and real in the questions it asked. At the time, Bob Plantenberg was 23 and needed a summer job. Scooter was 21 and needed full-time support. In the time they spent together, Plantenberg, who came to the job with no experience working with autistic people, grew to be close with Scooter. He accompanied Scooter on outings, helped him with all parts his daily living, and was subject to Scooter’s meltdowns, which grew ugly at times. In reading the piece, as much as it shook me to my core to feel the vulnerability of Scooter and how much he relied on Plantenberg, it also reiterated my biggest apprehension with D:

That if he cannot get to a point where he can mostly care for himself, how will we map out the rest of his life? Who will be the caregivers? What will be the living situation? Will he be able to live with us (if that’s what he wants and if that’s what is best)? How will the dynamics change as we grow older? Wrote Plantenberg:

Ideally, those who work with this part of the population now strive to empower them, to remove labels and barriers and work toward independence. And yet this is the ugly fact, a vestige of the institution era: The chief witnesses to Scooter’s life are not friends and family but scores of paid providers. People like me. We accommodate, teach, and encourage. We support. We never punish. And yet our interests are split between doing genuine good for another human being and getting a paycheck. So we’re also probably looking around for something that pays better than $10 an hour and doesn’t involve regular emotional, and sometimes physical, beatdowns. And that, in turn, affects people like Scooter.

It hurts to read things like that – to read about individuals with autism reduced  to jobs that “involve regular emotional, and sometimes physical, beatdowns.” I’m not saying it’s untrue. It is true for some of the population. It is not true for all. Autism spectrum disorder is just that — a vast, huge spectrum of individuals for whom autism manifests in so many ways. So many are able to live fulfilling, independent lives — still challenging, but lives of their own making. Some are not. I can’t predict D’s future. But we can be practical. And we must prepare.

The inevitability and unknown of the future is one of the most difficult autism truths for us to face. We are working so hard to give D the tools and prepare things for him to help him be in charge of his own future, just like we are doing, albeit in different ways, for his brother and sisters. Ultimately, as my parents and in-laws have been saying to us all along, this is a leap of faith. An utterly gigantic, God-propelled leap of faith.

We will work to ready the world for D just as hard as we are working to ready D for the world.

And, we will pave the paths of D’s future as best as we can, trusting God to hold D’s hand and walk with him along the way.

 

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