Joanna with her son, Alex
Here we are at the end of Autism Awareness Month, a month full of puzzle pieces and blue lights and TV specials and inspiring stories. To be honest, I have really mixed feelings about these “awareness” efforts. For those of us deeply involved in the world of autism, this month makes us acutely aware that “awareness” isn’t enough.
For me, as the parent of a young adult with autism and Type 1 diabetes, I am grateful for awareness efforts, but I am much more interested in what comes next. Will my community become a supportive and welcoming, inclusive place for my son? Will the system of services and safety nets for people with disabilities and their families become more robust or will they be eroded or eliminated? Will increased awareness really result in positive change?
Parents and, increasingly, individuals with autism themselves are the driving forces in moving these efforts forward. The biggest shift for me has been changing my focus from what my son deficits to a focus on his strengths and abilities.
For years and years the entire focus of the education and services for my son has been about “fixing” and remediating things that he cannot do or cannot do well. Participating in Special Education and most other services for children with disabilities REQUIRES that everyone focus on a child’s needs and the areas of greatest deficits, often to the exclusion of anything that they are good at or interested in or capable of.
Now that my son is out of the school system and transitioning to the adult world, I have been making the shift to “strengths-based” goals and activities, taking advantage of his current interests and talents to shape a meaningful, interesting life for him. Initially, it felt a little bit like giving up, which no parent ever wants to do. Instead, I have framed it more as real acceptance of who he is, leaving behind the construct of who he should be or what society expects of him.
An example of this has been at his paid job at OSH. When he was first hired there over 4 years ago we had a vision of him gradually learning and building skills that would have him come closer to meeting the job description of the “sales associate” for which he was hired. He started with sweeping in the garden center and our plan included having him learn to water the plants, stock the shelves, help with inventory restocking, respond to customer requests, etc. In a job that is only 3-5 hours a week, that’s a pretty tall order. Reality and acceptance have led us to embrace the fact that he is the guy that sweeps and waters in the garden center and that’s about it. He prefers a regular, predictable routine. He is not encumbered by ambition or boredom. He takes pride in being a long time employee of a local business. None of the other sales associates are clamoring to do the sweeping and watering that he does so it’s a happy balance for all.
Focusing on his strengths has also allowed us to start a small business, Big Al’s Best. From the time he was about 7 or 8 years old he loved to write lists of things and developed really nice printing. People would marvel that he almost wrote in computer font. We have taken that talent and helped him create greeting cards and art that features his calligraphy. We have also taught him to make and weigh and package our unique toffee that we sell at craft shows and fairs. He loves having something to do and he is capable of a lot of things, but he also like to work in small increments of an hour or two and be able to take breaks. I feel like my job now is to assess is abilities and strengths and then help design programs and activities and a life that embraces those and lets his talents shine.
We live in a world that is often hyper-focused on what we are NOT, what we can’t do. Shifting my focus to my son’s strengths and abilities has also freed me to embrace my own. That is a happier, more positive place for all of us to be.
As Autism Awareness Month 2018 comes to a close, I hope that the growing awareness results in more acceptance, appreciation and inclusion for all of our children.
Joanna Jaeger is the mother of two young adults, one with autism, both with Type 1 diabetes. All along her journey, Joanna has found ways to connect with other families both seeking and providing support. She has been a long-time volunteer with Parents Helping Parents in Santa Clara, CA (www.php.org) providing help to families of children with a wide range of special needs as a mentor parent, advocate, fundraiser and Board member. She is passionate about food, travel, and baseball.
