teens

"He's far from an adult in reality." What life is like when your child with autism grows up.

When I became a mother, I obviously knew it was forever. And I knew it wouldn’t all be easy. I knew there would be the newborn stage of no sleep, the “terrible twos” (and, let’s face it, the “terrible threes”), and of course, the teen years we all know and love.

I read all the parenting books I thought would prepare me for each stage of childhood. I modelled behavior and implemented parenting strategies, muddling my way through the years and various developmental stages.

Early on, it was clear something was different about my son. He started demonstrating troubling behavior around 14 months.

The years that followed were indescribably hard. He was kicked out of one preschool and threatened to be ousted from another.

Side note – Kathy Lette on why we should change the way we view autism. Post continues after video.

Video by Mamamia

At age nine, I had to put him in a psychiatric hospital. In fifth grade, he was temporarily removed from his elementary school and placed into a day treatment program. At 12, he was hospitalised again.

This was not the childhood I had envisioned for him. I was at a loss as to how to handle it. We saw countless therapists and psychiatrists. Finally, at age 14, he was diagnosed as being on the autism spectrum.

Despite the diagnosis, I continued to believe that, at some point, his childhood would end and he would arrive at the chartered destination: adulthood. I also believed that, once he was there, I would no longer need to actively parent him. He would grow up, move out, maybe go to college, find a job – all the things I now recognise most parents take for granted.

I now know that he may never fully grow up the way most people do. It’s a realisation I was not at all prepared for.

***

When my son was younger, I was mostly in control of his world. I could provide for his wants and needs. I could protect him.

He was a child and he expected me to order the world around him. When he was a little boy, it was fine that I drove him wherever he needed to go. He was content to live in a room in my house. He was like every other kid in those small yet significant ways.

I knew my role: to feed, bathe, protect, and care for him. I got him to his appointments. I made sure he had proper accommodations in school and fought hard for everything he needed. I made sure he had his medications and was taking them.

Then, in September, my son turned 18. He is now recognised as an adult by law. But he is far from an adult in reality.

My son is at an age where most children are supposed to thrive. He is supposed to go to college. He is supposed to move out and live on his own.

Instead, my son has been unable to take the test for his driver’s permit because he does not understand how to study for and pass the written exam. He is struggling in his senior year of high school. He is uncertain about whether he will be able to graduate. If he decides to drop out, I can’t stop him.

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A few years ago, he pursued a job at a local fast-food restaurant and did a phenomenal job of advocating for himself and obtaining the position. Ultimately, however, the job proved too challenging. He quit after a few weeks and has not worked since.

Being unable to drive himself anywhere limits his job opportunities. I’m his main source of transportation and I work full-time.

***

My son is no different from any of us. He has dreams. He wants to grow up and become his own person. As his mother, I have done everything I can to help him do the things he wants to do, but I’m not sure how to make those dreams a reality for him now.

Melinda Hildebrandt speaks candidly to Mia Freedman about parenting her daughter who has autism. Post continues after audio.

Suddenly, we’ve been thrust into a world that neither of us understands or expected.

Now that he’s a legal adult, I can no longer make medical decisions for him. He’s stopped taking medications without titrating down the dosage because he no longer wanted to take them.

His lack of financial sophistication risks putting his credit in jeopardy – a misstep that will have long-reaching consequences for someone already severely disadvantaged financially. He will struggle to manage a budget for his basic needs once he does find employment as well.

While an adult in the eyes of the law, he remains very much a child in mine. He still has many battles to fight – but I am no longer allowed to fight them for him. This next stage of life is like becoming a new parent all over again. It is about learning what my child needs, what role I can play, and what role I can’t.

While parents of young adult children lament their newly emptied nest, we are fighting each other for freedom. Freedom for my son to live a functionally independent life and freedom for me from bearing sole responsibility for meeting his needs. We both want to be free, but we just don’t know how to achieve it. We are at an impasse, as both of us desperately want to grow beyond this.

He wants to be in control of his own life — understandably so.

Fortunately, my son qualified for services through our county’s regional center. They will provide resources to help him with daily skills and vocational training and support, which I encourage him to seek and use.

We are navigating the process of applying for social security income to supplement anything he makes through employment.

We have added him to a waiting list for rental housing assistance eligibility so that he might live on his own in the future. I may need to become his conservator to handle his financial and medical affairs, but he wants to be in control of his own life—understandably so. Don’t we all?

My son still has time to mature and to grow, of course. I continue to hope that he will. For now, I guess all we can do is wait, and hope.

This post originally appeared on Medium and has been republished with full permission. For more from Jennifer Hulst, you can find her here or on her Twitter

For support and information about autism, you can the Autism Advisory and Support Service (AASS) 24-hour Autism Hotline on 1300 222 777. You can also find more information about resources and support at Amaze.org.au

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