Originally published The Mighty – Cindy Appel

 

“I signed the lease for the apartment,” my 23-year-old son told me, “I move in 10 days from now. I also got my occupancy permit and signed up for two college classes.”

This wasn’t shocking for me, because we were all in agreement that it was time and we 100 percent morally supported him in pulling this plan together. When he verbalized all he had pulled together though, for a moment, it really hit home that there was no sign of the little boy who rarely spoke, and was constantly moving as a way of regulating his sensory needs associated with autism spectrum disorder. My role in his life was certainly different back then than it had become in recent times.

As parents, there is no book of directions, and in the end, it comes down to your child’s ability to problem solve and work around barriers. It can also come down to their commitment to walk through doors. Years ago, when he was a child, I kept him safe, advocated my heart out for him, and tried to encourage his emotional growth and not get in the way. I taught him to honor what he knew to be true about himself and celebrate his place in the world.

That is in the past, and he got to where he is today because he took responsibility for himself and made it possible. So this step out into the world is 100 percent his victory. Do you know what I deserve credit for? Not being an additional barrier to his life, and telling him years ago not to let anyone but himself dictate what he could try to do with his life. The rest was just knowing him and listening to him. Even much of that was him being who he naturally is.

My biggest barrier has been my anxiety level when dealing with the world’s attitudes about him. It’s stressful going through years of day in and day out wondering what new crisis would be created by people not respecting his right to an education, his rights under the ADA, and people being cruel within our extended family and general social interactions.

Ask any parent in similar shoes and chances are they’ll share a similar experience with anxiety, even post-traumatic stress disorder. The son I raised has never been a stressor on me — it’s been the world we live in, where ableism is brutal and common. I have had to work very hard to not let my anxiety interfere with my son’s right to grow up and lead his own life to the best of his ability.

His ability has proven to be pretty awesome. It’s been two months since he moved out. He lives 15 minutes away. He is the master of his own life and destiny. Over the two months, I’ve lowered my hovering score from an 8 to a 1 on a scale of 1 to 10.  He and I have had discussions about it and I’m so glad we cultivated an open relationship where he can just be honest with me. He has proven his ability to have what any other 23-year-old deserves: respect and space to grow as the adult he is.

I don’t go to bed worried about him at night. I don’t wake up wondering if he will be safe today. I know he is paying his rent and bills. I know he is eating well and keeping up with his laundry and basic care of himself. He gets around on his own without problems, and takes great care of himself. He has a 4.0 this term in college so far, and his apartment is kept pretty clean.  In the past few weeks, he has made very wise plans that give him more flexibility in the future.

We made some not entirely popular choices as he grew up based on what we knew to be true about what he needed. Our choices dared to think beyond what professionals were telling many parents.

What Parenting Tools Made the Most Difference?

1. Maximize the growing up years to try to build life skills.

I had pressure from the system to not teach him independence skills. Their view was for parents not to teach the children life skills so that when he turned 18, he would qualify for adult services.   That seemed to be the goal put upon us by his caseworker from the state.

I felt it was absurd to not attempt to teach life skills in the home.  There was no way of knowing if the government would provide enough funding for everyone to get those services. If we could teach it at home, why would we want taxpayers to pay for it? I certainly had more patience and love for him than the average minimum-wage aide working for the state would. I felt the situation deserved us trying to teach him myself.

Starting in his early teens, he began to learn to cook and do his own laundry. He also learned to shop for his own food. Before long, if he wanted the food he wanted to eat or to have clean clothes, he had to be the one to make it happen. We kept it all positive. He took pride in learning to do these things. I was always around to assist if needed. He used crockpots to make meatloaf and a healthy yogurt cake. He learned to grill lean turkey and chicken burgers on a panini-style grill. He increased his intake of vegetables and fruit by being involved with preparing them to eat. To this day he makes the best whole wheat pizza crust I have ever eaten in my life.

He learned how to budget and how to maintain a bank account. He really loved that, because the only thing he loved more than reading was numbers.

2) We encouraged him to feel good about who he was, and to embrace his disability.

This is a great time in human history for every person to embrace their worth and value. With the push for our society to be pro-diversity and inclusion, there is no better time to teach our kids to enjoy who they are and see that all of us are different in our own ways. No one should be limited by the fact they may have to approach life differently.

Different or not, we all make one powerful society!

3) Know that every human life has the right to live in peace and with respect.

Our kids with labels tend to have a great deal of focus on their own needs. It can potentially become a skewed view of reality to allow them to believe it’s only about them. To combat that, we always made sure he was part of volunteer work. We made sure it was a variety of places and skill-appropriate. As he got older, I never saw him look down on anyone.

On his own, he now has signed up to take part in a program that emphasizes diversity and inclusion so he can learn more about the histories of other minorities.

4) We taught him to appropriately advocate for himself before he became an adult.

I had worked as a social worker and community advocate for some years. I made some worksheets for him on basics about how to advocate for himself.  We would get them out and ask him questions every now and then. When he turned 18, he didn’t have to wait long to put his self-advocacy skills to test.

“Please sign the paperwork,” the impatient caseworker said.

He replied, “Not until I read what I am signing.”

“It’s the same paperwork every year, so there is no reason to read it,” the caseworker said.

“Well, I’m not signing it until I read all the pages. How about I take it home and look at it and get back with you,” my son told her.

And that is what happened. I knew after that meeting where he advocated for himself with no prompting from me that he could easily speak for himself.  He had the confidence and resolve to speak up if he needed to.

5) If applicable, don’t assume the only answers lie in what the programs in your area offer.

After graduation from high school, my son assumed he would have the right to determine his own career path and decide his own life options even if he worked with agencies. That was not the case.

He was increasingly unhappy with the status quo offered by the agencies in our area. It seemed to us that they would go out of their way to find reasons not to provide employment services. The best advice I could offer him was that only he could determine what he tried to accomplish with his life. His choice was to dump the programs and give doing his own thing a try.

He immediately got creative and proved to himself and others he could do what he wanted to do. He created his own opportunities including: lead data intern for a political candidate’s campaign office and a couple years of data work at a private but large library at a local church. He rented retail space for a collectibles business and kept it in the black for two years, Doing college-level work in accounting and computer applications has given him more options in life.

6) Remember human self-determination is paramount.

As a social work student of the 1980s, I was energized by the notion that “client self-determination is paramount.” It was drilled into our brains every step of the way in all of my casework classes.

I paid attention and saw what my son was communicating with me. If I was unsure, I would just come out and ask him, or I would let him know it was OK to talk when he wanted to. Sometimes I could see he was unhappy with something, so I’d ask him if I was right about what I was noticing and then he would tell me.

Over time he has gotten much better about speaking up. He is a master at it now.

No matter what labels are associated with someone, they are entitled to as much self-determination as possible.  It is their lives, not anyone else’s.

In the case of my son, I am so excited and glad he has this chance to be on his own and do his own thing. Further, I am glad I didn’t give in to my neurotic thoughts and camp out in his living room the first night he moved in. I dealt with my anxiety issues on my own, and made sure his life focus was what he wanted, not what I wanted.

7) It’s OK to own your own anxiety and treat yourself with care, just don’t let it interfere with your child trying to come into their own.

I had always wondered how him moving away from home would come about, what it would look like, and if anyone would feel lost. When he was young, insecure and it felt like him and me against the world, I thought we would both be heartbroken if and when that separation would happen.

I learned early on that with independence comes safety. Since I can’t live on this planet forever, the more independent he can become, the safer he will be. His safety equals a lessening of my anxiety. Five years ago we had no idea if this level of independence would be possible. My anxiety level was out there, but there was hope with the notion of “what if.”

He became his own dreamer and doer. I just kept an open mind and tried to stay out of his way. I wasn’t always perfect with all that, but thank God I didn’t do enough damage to make his options fewer.

I will do what I can to heal my anxiety that remains. As long as I live, I am always here for him. And I’m finding peace in knowing he is there for himself as well.

What helped you transition to adulthood as an autistic person?