Facing my fear: to save my autistic son's future, I had to let him go | Elayne Robertson Demby

It’s always hard for parents when their children leave home. But usually they can fend for themselves when they do

Watching the child you once cradled in your arms walk out the door and into their own life always fills a parent with a sense of terror and loss. You raise them as best you can and hope that the adult you created will succeed.

When that child, however, will never truly be an adult in the typical sense of the word, it’s more complicated.

Over 21 years ago, I gave birth to a beautiful, blue-eyed baby boy. At first, all went well. Evan, my son, initially met all his developmental milestones. But then, at 18 months, I realized something was horribly wrong.

While other children babbled, Evan was strangely silent. While other children played with each other, Evan played by himself, endlessly rolling toy cars back and forth.

We started making the rounds to doctors, and, after many evaluations and tests, got the diagnosis. Evan was on the autistic spectrum. Initially we were told that it was doubtful he would speak, or be self-sufficient.

Despite the dire prognosis, I threw myself into “curing” my son. After years of therapists, and hard work, Evan had limited, basic speech, could dress and take care of his toileting needs.

Even with those gains, Evan never progressed mentally beyond toddlerhood. Physically, however, he continued to grow into an adult, eventually reaching 5ft10in. He weighs over 200 pounds.

I began worrying about his future early on. I couldn’t expect him to grow up and support himself. I also couldn’t expect him to live without someone caring for him. I initially thought that relatives who loved him would be able to care for him should my husband and I become sick or die.

After my husband and I returned from trip to Ireland when Evan was 15, however, we knew that was not the case. We had left Evan with my mother. Within a day she realized she was not up to the task of caring for the very large, 15-year-old toddler my son had become. Both of my sisters lived nearby, so every day they “passed” Evan between them, no one capable of caring for him for more than several hours at a time.

After we learned what happened, I knew other arrangements were needed for Evan’s future. I could not expect family members to take care of him – he needed professionals. To be honest, I was not sure either my husband or I could do it on our own either. I became increasingly nervous about Evan’s future, and often found myself lying awake at night wondering what would become of him.

I threw myself into researching what the potential arrangements could be for an adult with autism and eventually realized that it would be best for him to go to a residential school out of state. We live in Connecticut, and if a child lives with his or her parents when they “graduate” from school at 21, then that child will not be eligible for an adult residential placement until there is an “emergency” (like both parents dying).

If a child like Evan was in an out-of-state residential school, however, they automatically qualify for residential funding from the state when they turn 21. I knew I had to send my child, who was still effectively a toddler, away for his own good. It was the hardest decision I ever made, and I had to convince my husband that it was the right one as well.

Even after we decided what to do, making it happen was not easy. For him to go to an out-of-state residential school meant I had to get our local school district to agree, since they would be the ones actually paying for it. At over $200,000 a year, it was not something the district wanted to do. We could not pay any of the cost, because that would disqualify Evan from receiving state funding when he turned 21. We commenced on a two-year legal battle with the school district.

In the course of all that, I was diagnosed with breast cancer and could not meet all of Evan’s needs when I myself was sick. My cancer was caught early, and my treatment was not overwhelmingly invasive, but it was enough to make me realize that I would not always be in perfect health. Evan needed the care of someone who was. I redoubled my efforts to place him in a residential out-of-state school, eventually gaining him a placement in New York when he was 17.

Evan, now 21, lives in a state-run group home 40 minutes away from our home. He has friends – a social life with peers that are like him, something he did not have at home.

Most importantly, Evan is now somewhere that, should I die or become ill again, he will always be cared for. Giving up a child is the hardest thing for a mother to do, but it was the only way to ensure his future.


Elayne Robertson Demby

The GuardianTramp

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