I am the parent of two autistic children, one of whom is Asperger’s, now age 22. The hardest part about my son’s transition into young adulthood was just letting go. As most parents of special needs children, I over-functioned for him – big time.
Not only did I protect him from children who bullied him and doctors and psychiatrists who just didn’t seem to get him, but I did things for him he simply couldn’t do for himself.
For example: tying his shoes. He didn’t have the coordination or patience to learn, so to avoid a tantrum and the inevitable meltdowns, I tied them for him. Sometimes you forego the war to win the battle. As he got older and was more capable of taking care of himself, my over-functioning for him didn’t go away. This made him regressive, until he finally informed me in no uncertain terms to stop treating him like a baby.
My real slap in the face about letting him go was when he turned 16. He went to a special needs boarding school for four years, where he developed quickly because he was forced to be challenged and live up to his potential. When he left, I was terrified! Did I make a mistake in sending him? Should I have kept him at home even though it was clear that he was making absolutely no progress in the schools in our city? After the reassurance of all of the progress he was making, letting go got easier, but my mommy reflexes still kick in at the slightest provocation and I have to be constantly on guard against them. They are no good for him and no good for me.
When he finished that program, there was the question that faces the parents of all autistic children: what now? How can he go further in life, get a job and, if not, lead a full and productive life? We were very fortunate in finding a terrific residential community, where the excellent staff has helped him continue his progress and find work training experience. Now he has a wonderful job, participates in Special Olympics and he has even developed some friendships.
Here are lessons I learned throughout this lengthy, but ultimately very rewarding journey with my autistic son as he grew into an adult:
- Medication and puberty: As puberty sets in, medication regimens can go haywire for a lot of teenagers. What worked before literally stops working, in many cases. Observe the changes carefully – good or bad – and work closely with your child’s doctor.
- Planning for the future: Consult a financial expert in trusts and discover if there is a way to structure your child’s welfare after you are gone. This is, of course, the greatest nightmare of parents of special needs adults: who will care for my child after I’m gone?
- Finances: Consider every available state, local and federal programs that might benefit your child. MHMR (at least here in Texas) will give free medications and psychological assistance to those in financial need. I was unaware until recently that when I reach 62 and go on Medicare, my son will be able to receive Medicare benefits at the same time. There are many differences between Medicare and Medicaid. This link explains the difference.
- Building a support system: Explore churches, who are often more than willing to create a “job” based upon the needs and abilities of autistic adults. Reach out to national and local autism societies that have sprung up everywhere on the web. They offer great advice and direction for parents who don’t know where to turn and are a magnificent resource to connect with other parents who have the same issues. Let your friends and family help you. Don’t feel you need to do everything yourself. As I was told at one point: “You can’t be the entire bus. You have to drive it.”
Above all, never lose hope. No one ever gave me any indication that my son would be able to do a fraction of the things he is doing now. Miracles happen.