Nineteen years ago this fall, I took my toddler to his pediatrician for a scrip for reflux.
I walked out of the appointment with a referral to a developmental pediatrician for an autism evaluation, alone, overwhelmed, and terrified.
It was 2004. He was seventeen months old. I drove back home with him to our house in northern Virginia, and didn’t know where to begin to help him.
Over the next eighteen months I received training in ABA and delivered thirty-five hours a week to my son, because Virginia didn’t recognize an autism diagnosis through their Early Intervention practices. We hired a BCBA whose job was to create the programs, but also to give me hope.
Hope that because we identified him so early, he might talk.
Hope that because he was obviously bright, he might learn.
Hope that with quality and quantity intervention, he might end up on the milder end of the spectrum.
Hope that he might one day have a chance at some kind of independent life.
In his younger years, I worried about everything. Would he be able to communicate with us one day in any meaningful way? Would he read? Would he eat anything other than carbs the rest of his life? Would he potty train? Would he sleep?
I mostly avoided my biggest fears.
Would he need lifetime care and supervision?
Would his residence after my death be a place of love, safety, and caring support?
By the time he was six, his father and I knew that although he’d made so many gains- using a communication device to convey his needs, learning to read and type short sentences, a desire to enjoy and be part of the world- it was apparent he would never navigate our world on his own.
Despite all his progress, he would need 24/7 supervision until the day he died.
The thought of him being here for thirty or more years after my death haunted me.
And from this fear and anxiety about his future was born the desire to create a loving, supportive, safe forever home for my boy.
It has become the driving force of my life.
Throughout the years I have made many wonderful friends with other parents of autistic kids, especially a few with profoundly autistic kids like mine. I have nurtured these friendships, shared some of our darkest moments and fears only with them, because only they could truly understand. These friendships are forged in fire, bonds formed by exchanging doctor’s names, school recommendations, accommodating camps, and wine and hugs. They are my core.
I do not know where I’d be without them.
And somewhere along the way, this gift of friendship evolved into a desire to avoid our sons falling off the proverbial autism “cliff” when they hit adulthood. Somewhere along the way we decided we wanted a say in who our sons lived with, and who will care for them when they can no longer live with us. We came up with the idea to create our own version of a group home, with potential activities for other families with profoundly autistic children, as a way to care for our sons and simultaneously give back to a community who desperately needs these outlets. We want our boys’ collective adulthoods to be safe, happy, and dare we say it, fun.
A life that is different, yes. But never one that is less.
I am proud to say that our creation, born of our mutual desire to provide our sons with a safe, stimulating, and enjoyable residential life, is our 501(c)3, Homelife21. We will soon be fortunate enough to be the recipients of a wonderful fundraiser which will be held at the Dublin House in Red Bank, NJ, on October 14th, 2023 from 1:00 to 5:00. The proceeds from that night will be split between Homelife21 and two other autism charities, Autism MVP and HabCore; and the Moroccan Sheepherders, the Steve Reilly Band, and the Pontiacs will be the entertainment. We are at the beginning stages of the our journey to create the best adult lives possible for our children, and would love it so much if you could attend and celebrate with us; and/or if the spirit moves you, donate to the cause:
Here is the link to our website: https://www.homelife21.org
Our plan is not just to benefit our boys alone.
We also hope to eventually provide much needed hope and reassurance for other families with profoundly autistic children.
We will continue to work diligently toward our dream so that when we as parents can no longer be with our sons, we will know that they will be cared for, engaged in the community, content.
Because it should be the right of every parent or guardian of a disabled child to have the peace of mind and promise that their child will have a safe, happy and productive environment in which to live after they are gone.
And one of our deepest desires is that we can also be the model for other parents down the road, for all those who believe there has to be something more out there, that the best years of their children’s lives simply cannot be before their sons and daughters cross the threshold of twenty-one.
Please help in any way you can. Thank you!
For more on my family visit my blog at autismmommytherapist.wordpress.com
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