…When he doesn’t have the “antennae”.
Mike (not his real name) walked up to receive his High School diploma, shook hands with the principal, and then promptly danced and jumped up the aisle on the way out. We danced with him in spirit, as it had been a terrible ordeal for all of us the last two years. Unbeknownst to us, our brilliant scholar and straight ‘A’ student had Asperger’s syndrome. I think everyone at the small private school was slightly relieved that he was not the Valedictorian, as his speeches could be random, unpredictable, and not germane to the task at hand. He could have just as well have talked about how to make butter at home, or given it all in Spanish, leaving most people scratching their heads. He had “melted down,” in his Junior year, and was misdiagnosed with depression. He been unable to formulate plans for after High School, and rather than let his talents go to waste, we (ridiculously) enrolled him in a local university with hopes something would inspire an interest, and he could find a niche in the world.
To make a very long story short, Mike could not adjust to college life, and in the second semester, isolated himself, then, dropped out. In the meantime, we had begun hearing about Asperger’s, and while researching it, the light bulb came on for my husband and me. The pieces totally fit. He finally saw a Psychologist, and, after extensive testing, she confirmed our diagnosis.
While knowing the truth, and struggling to grasp all its ramifications, we at least had our son at home, and in a safe place. We struggled with our fears, emotions and tried many interventions to help us figure out what to do: 1.) Regional Center (he had made it through High School – did not qualify) 2.) a social group for other “Aspies,” (he hated them and thought the facilitators were condescending), 3.) forced him to take at least one class at community college (he secretly went to a quiet area and played video games), 4.) a mentor (he despised him), 5.) some ABA at home, requiring him to get out of bed by 3 pm and to initiate a greeting, and finally, 6.) The State Department of Rehabilitation (absolutely clueless about autism spectrum, their only solution was for him to attend community college!)
All Mike really wanted to do was live on his own. We started from there. How do you teach a 20 year old, about the outside world, when he had never developed antennae, or even a curiosity about how things work “out there?” He did not drive, never mastered riding a bike, but he did not really think of himself as “disabled.” I really needed help, and again, investigated many avenues, but realized I would have to “invent the wheel”, and do it myself.
One of the best days of my life was when I discovered www.caseylifeskills.org. Although it was originally developed to assist foster children in Massachusetts who were about to turn 18 and leave the system, it provided an inclusive list of areas that needed to be learned, and also had an assessment for the youth to take, and for the caregiver to take. I took the test, and gave him the test to take. We were worlds apart, with him, of course, overestimating how much he was capable of doing. But at least I had a list– a place to start, and began to gather my materials.
With nods to Casey Life Skills, here is a list of areas that I used to begin teaching Mike to take care of himself. I am happy to report that as I write this, he has been living in his own apartment for three years now, and he is content. He is maturing, becoming his own person, and proud of being capable and self-sufficient. When he is content, I am content.
In further blogs I will break down these areas in more detail, in hopes that other parents will not have to struggle like I did. I do not pretend these are perfect, and I’m sure many can find holes in the material. My desire is for others to use these topics as springboards and support for your own customized life skills curriculum for your loved ones. Every person will have to live somewhere when we are gone. The terror of that thought motivated me to teach my son to be as independent as he could possibly be. No matter if your child will live with family, in a group home, or by himself, this outline can give you a way to organize your training no matter what the level of ability. And please, check out
- Housing and Transportation
- You and the Law
- Money Management
- Community Resources
- Home Care
- Food management
Note* There are other resources online that give assistance with Career planning and Workplace Skills. I have not included this in my list. Mike is on Disability, and is not able to function in the workplace due to social and cognitive disabilities, and “delayed sleep syndrome.”