My immediate survival mode kicks in when my 39-year-old son, Trent, stands in front of me looking deep into my eyes, saying, “Big hug,” then asks me what his day will look like. This was his life eight months ago, which was much different than the last 15 years.
Transition doesn’t only happen when high school ends — it can happen anytime in life. Nobody talks about middle-aged or older adults who rely on supports for transition throughout life. It is time to add this to the dialogue when we talk about autism: adulthood, interdependent living and well-being beyond the school years.
Trent was diagnosed with autism in 1980 at 3 years old. He is verbal but has communication and social anxiety challenges. Yet, when he has people around him who understand his needs and see his strengths, he has a general ease and contentment about his life.
His high school years went well. He sang in the choir, which he loved, and he was selected for a new innovative employment program, which offered him two paying jobs. It was awesome. I felt so fortunate for these community employment services while he was still in school.
After high school ended, the “falling off the cliff” people talk about was real. But it eventually had a positive impact on me. After we landed, we brushed off the dust and I counted the blessings we had. I also got curious about “what was next.” It got me moving. We listened, followed his lead and supported Trent by helping to create opportunities for him.
Of the 21 years of Trent’s adult life, 11 years he had a part-time job at Meijer, a retail and merchandise store. Trent enjoyed his job in the pets department and lawn and garden. He was a team member, worked with co-workers and was appreciated by his employer and the regular shoppers got to know him. One day when I was shopping at Meijer, I overheard the store manager bragging about Trent to his corporate manager, “Yes, Trent is a legacy here, what would we do without him?” His comment took my breath away.
For the past 16 years, Trent rented his house from a family member and has only had two different live-in supports. He used a state grant that paid for live-in support, and he has had and still has a voucher to pay for reduced rent through Section 8 housing.
Fast forward to eight months ago — things changed quickly.
Trent’s live-in support left, so Trent moved back home with his stepdad and me. Similar emotions to what I felt after high school ended came back. I questioned myself — can I rebuild a life of support for him again? I knew it would never look just as it had previously. Now for more change, more transition and new people to find to travel on a new road.
Then along came Hannah, who became Trent’s new daily support and friend. We found her by running into her mother, a friend we knew through the artist community. Hannah is 23 years old, upbeat, fun and a recent college graduate. She and Trent fill their days running around town, painting in his art studio, exercising at the gym, participating in shopping for his personal items and groceries, eating out in restaurants or just hanging out at his home watching TV. Trent started to get his old life back with Hannah, who opened up his world.
Then two months later, my brother stepped forward to be Trent’s live-in support. He and Trent have had a unique relationship for years, and most importantly, Trent feels safe and content with my brother.
I believe nothing just happens. I want to share with you the 10 lessons this transition and life have taught me. You might consider these, too:
1. Embrace the uncertain future. I have to be honest, I struggled emotionally with this, but I kept moving, taking small steps regardless of fear and uncertainty.
2. Notice all strengths. You never know what door will open as an opportunity for the individual.
3. Find any way you can to guide the individual to develop their best strengths and interests.
4. Find support people who care and understand the adult. It’s important they follow through to meet needs, challenges, interests and, most importantly, safety.
5. Create opportunities where the individual can experience everyday community settings for purpose, enjoyment and developing strengths.
6. Create work and career opportunities that offer the individual meaning, structure and interests that align with their personal preferences and strengths.
7. Remain curious about how to help guide the individual to improved life situations. I believe it’s my curiosity that has led me to become open to see potential realities for Trent.
8. When you are up against a brick wall, try one more thing, just one. I recall those days or months when I couldn’t see my way. I tried just more more thing, one more action or reached out to one more connection.
9. Don’t let people tell you there isn’t growth after a certain age, because there can be. But let me qualify this — it’s important to have community interactions and positive experiences that deliver safety and predictability to the individual.
10. Advocate for more improved individualized employment and community services/resources for this group.
With these actions and provisions, Trent has been able to:
Create oversized abstract paintings with brilliant color, using his strength in visual spatial ability, which brings him joy
Connect and interact with the art community. It has taken years, but he is exhibiting his art in fine art shows and galleries nationally, including the prestigious Agora Gallery in New York City and the Sweet Art Gallery in Naples, Florida. (Watch a video of Trent painting.)
Follow a daily routine that enhances his connections, communication and flexibility.
Enjoy comfort and delight living in his own home. He is known as a neighbor and a community member.
Know what he can look forward to. He has daily activities he enjoys and things that are important to him, such as his golden retriever, Katie.
Feel and express love and be emotionally and deeply connected to close family members.
Feel physically well. He exercises and takes holistic supplements.
I realize he is vulnerable to this world. I am also vulnerable to the day I will no longer be able to oversee his support needs. I don’t really know what to do about this but to only do my part now in advocating.
My son and other adults with autism who need added support may rely on us to live physically and psychologically safe, connect with others and have daily activities they enjoy. I no longer strive for my son’s “independence.” Rather, we strive for “interdependence,” which means, “we are mutually dependent upon each other, and we each can offer value by contributing our best to the entire group.”
In my view, this is the only way acceptance will evolve in our world. For now, I will do my best to oversee the supports that help him.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.