Aspergers, autism, mother's love, thriller

Learning To Let Go

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.

  • Endersdragon

    I think I can resemble a lot of this. I am Asperger’s… sortof… no one really knows because while I was showing signs before the age of 7… I got into a car accident then and its impossible to tell what caused what as I obviously have a TBI on top of it (by this was 1993.. Asperger’s knowledge was just barely coming out and I think I had only ever seen one, maybe two, psychologists). Luckily for me, I have a mild case so I still got through college, still learned to drive (that one was tough!), hopefully will be able to hold down a profession job (special education teacher :crosses fingers: ) though then again I have only held two jobs before, and one was a summer camp job, and the other I only had like 2 months before being prematurely fired (horrible job for an aspie anyway…). I will hopefully never have to live in a residential community, I am getting along pretty well right now in apartments, though my food budget is probably a bit high (I say its about 300 a month or 10 a day, my biggest problem is with cooking so I eat out about 1 meal a day, not the cheapest thing to do, especially when you are trying to stay healthy).

    But then again I have seen some of the problems you describe. I think my mom still “babies me” a bit, even when I am 1000 miles away. She still is constantly checking up on me. She still shops for me (trust me, going into a Penny’s with your mom can be quite embarressing when you are 24!). She still worries way too much about me being on the road (granted I have been in 2 small accidents, but they were both really small and one was weather related, and the other was mostly a third party who didn’t stick arounds fault). Heck she even worried when I started martial arts, though she would deny it (then I go and nearly get a concussion to confirm her fears… that was dumb of me lol). So I get the overbabying of aspie kids.

    One of the weird things about me, is that I never took meds and never really had a support center or whatever. This isn’t to say I might not have ever benefitted from them, but the way I saw it, I had reason to be depressed, I had reason to be on the verge of suicidality (is that a word? lol), and I wanted to know that whatever I felt, it was my own feelings. So I was never on any medication, at all, other then tegretal which I stopped when I was like 10 (I hated the way it made me feel, sortof zombieish).

    Though I will admit that a support center would have been nice I looked around and what there was offered and its like, none of this fits me. Despite growing up dirt poor for much of my life I was never really and “at-risk” kid, not to mention “at-risk” kids generally scared me. The special needs groups were filled with kids I thought on no uncertain terms were “retards” (this is the younger me talking there). The church groups were nice, but so hard for someone like me to put myself into, so while I got along with Keith, the youth pastor, that was about it. I tried one of my “friends” smaller youth groups… but then we had a falling out after I asked her out (suffice it to say, she had some problems of her own).

    So there I always was stuck between fitting in with the normal kids and being a true special needs kid. Luckily I made it out, but it was never easy, even with the support services my tiny college offered. I am not quite sure what my experience added to this conversation, but I hope it added something lol :). I think I rambled a bit.

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