In yet another effort to get my life and papers organized, I recently ran across a document that I wrote about 20 years ago as my son was entering kindergarten, entitled, “What I Know For Sure”. At the time, Alex was a 5 year old with autism and he had yet to be diagnosed with Type 1 diabetes.
As I sat down to read it, I was amused at my confidence, surprised at how well most of it has held up, and a little sad about some of the important things I got wrong or left out. It was a five page document and a lot of it foreshadows the work that I have done since that time as an advocate for people with disabilities and their families.
What I got right:
- HOPE is important.
- Set high expectations.
- Parent involvement in all facets of life and treatment is critical.
- Ask for help.
- Be suspicious of “miracle cures”.
- A diagnosis doesn’t change who your child is.
- Remember the whole family, take care of yourself, your spouse, siblings.
- Good therapy for autism should be fun most of the time.
- Choose your battles.
What I missed:
- I really expected that my son’s story would be one of “recovery” from autism. I don’t regret the optimism that I had for my little boy, it helped me through the journey, but he’s still an interesting, amazing young man.
- I didn’t really focus on inclusion as much as I should have. Inclusion in our community is now the core of all of my efforts in his young adult life and he doesn’t need to be “normal” to be included.
- At that time ABA was pretty much the only game in town for effective treatment of autism. I am still a big fan of behavioral teaching strategies for teaching many, many things, but it isn’t always the most effective approach for teaching the subtleties of communication and social interaction, nor does it consider some of the significant sensory and motor planning issues that many people with autism struggle with. Developmental, sensory, play-based and relationship-based approaches can be very powerful and effective for children and adults with autism.
- At that time I was solely focused on my son and my family and was a little “judgey” about others. Over the years with broader and more diverse experiences and exposure I have softened in that area. People are trying to do their best and I will do my best to support and encourage their efforts.
- I had NO idea how different autism is from individual to individual. The kinds of struggles and range of support necessary for each person varies widely and is very complicated.
As I process all of this, I feel proud of how far we have come in the past 20+ years. I am trying to remember that outwardly confident, inwardly terrified young woman and to be proud of this family we have created and the work we have done to help other families over the years. Although my son was not one of those considered to have “recovered” he has a full and interesting life and makes meaningful contributions to our family and community and he continues to learn and grow every day.
The last entry in the list from that original document was “It’s okay to take a day off sometimes”. I still stand by that one. We have to care for ourselves in order to continue to care for our families.
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.