Because I do. Really.
The Husband and I used up 3 precious babysitting hours to attend an Asperger’s/High Functioning Autism support group. I made plans for us to go while in the throes of a particularly rough week with The Boy. I thought, “A support group? Sign me up, because I’m all about being y’know…. supported.”
I left the 2 hour (Not a) Support group feeling not so much supported, as terrified and confused. See? Not so supporty.
Now it wasn’t the people in the group….no, they were fine. They did the sharey, sharey thing. They listened attentively when it was my turn to share. Yeah, it wasn’t so much the people themselves as what they shared. I was confronted with some things that were not even in my realm of consideration.
A lot of them had older children with Asperger’s, and by older, I mean 17, 18, 19, and 21. One lady discussed a church service that she thought her 18 year old daughter would enjoy, but attending involved two hours of a prior service that was too loud and stimulating for her daughter to sit through. She needed advice on what to do with her 18 year old daughter, who has Asperger’s, for those two hours. This is a large church campus, with a coffee shop, walking paths, and many park-like areas. Her 18 year old daughter was not capable of sitting with a laptop or book in the coffee shop, or walking the paths? I hadn’t even pondered the possibility of The Boy not being self-sufficient for a two hour block of time at 18 years old. I learned that many, many people with Asperger’s, apparently don’t drive. They ride the bus. Now please don’t jump all over me as I fumble through my thoughts. I am not meaning to offend anyone. I am just trying to frame my thoughts on a subject that is so new, confusing, scary, and at times sad. I’m not saying there is anything wrong with riding the bus…but it is not what I pictured for my son. I pictured him pleading to borrow the car and bringing it back with the tank empty - not getting his picture taken for his bus pass. And not being able to maintain alone at 18? I definitely never considered that. One man discussed the legal battle he was in over conservatorship with his exwife. Conservatorship, as in, you are an adult, but can’t make certain decisions, or sign any contracts, etc…..so some other person has to regulate that for you. Really? Is this the norm for Asperger’s, really? And I found myself passing horrible, horrible judgments on these people. Judgments that I was ashamed of, but persisted in making anyway. The lady with the 18 year old daughter was clearly co-dependent and must be keeping her daughter dependent on her to fulfill her need to care for someone. The woman whose son had his dad drive with him to all of his college classes was a little odd and socially awkward herself, so maybe it wasn’t even the Asperger’s, maybe they were all just weird. See? Horrible. But not as horrible as being confronted with what could be for The Boy. That can’t be right. The Boy already drives dwarf cars, and quads, and motorcycles…surely a car is a logical next step. Right? Sometimes when we are going somewhere that doesn’t sound appealing to him, he begs to be allowed to stay home alone. Of course I never let him, but doesn’t that count for something? Was it just this group? Is it the norm? I demand a to see a larger sampling - because this support group scared the crap out of me.
I know Autism and Asperger’s are spectrum disorders - meaning there are so many varying degrees of severity. I know I can’t look at one particular case to be a crystal ball for our future. But two of the people there were “experts”. They were involved in various projects that put them in contact with many people on the spectrum. They didn’t even bat an eye at these stories that made my heart stop in its tracks. And I felt fear and anger wash over me.
But after a long rant on the car ride home, I began to gather up my pieces again. The Boy is not any of the other people in that meeting. He is The Boy. He is his own person and his own experiences. The experiences of those whose stories had knocked the wind out of me were the experiences of others, not us. Now I am no fool, I understand that life will not always be a picnic for The Boy, but I know that we are going to go into it with our eyes open to all that the future holds. I will not live in fear of what could be, but will take each day as it comes. And I will research good car insurance because with what I have seen of the The Boy’s driving skills so far, we’re going to need it.
7 responses so far ↓
1 // Apr 12, 2007 at 12:17 pm
Yes, I think that support group needs support. And your comments about the people sounded right on. These entries about The Boy immediately click my brain over to my former self — the school principal — and I can say that the kids with Asperger’s I’ve known and worked around are all so different, with different strengths and abilities and interests — just like everyone else. I love your comment about the woman who is keeping her daughter dependent to satisfy her own need. How sad is that? And as far as driver’s licenses are concerned, we’re dangling the “If your keep your grades up” carrot in front of the RT, hoping that he won’t want to do the driving thing any time soon. How bad is that? Wishing for lower grades so the RT can’t get a permit. Sad mother.
2 // Apr 12, 2007 at 1:49 pm
I’m sorry that the group experience wasn’t so supporty. Your eyes are open and you’re so right about the varying degrees, taking things day by day and not allowing others’ experiences to dictate your expectations for the boy’s and your future.
The process of diagnosis and coming to terms with what that means for each family is a process in and of itself and I admire the way that you’re going about it. Processing your own anger, judgements and grief are such an integral part of the journey and will have a lasting impact on you, the boy and your whole family.
What a great job you’re doing.
3 // Apr 12, 2007 at 2:43 pm
Yes, I’m sure The Boy is will be able to function as an adult and not have to be supervised when he’s older like the 18 year old girl. That sounds like an extreme case to me. You’re on the road to discovery and so on and unfortunately it ain’t easy.
You’ll get there though.
4 // Apr 13, 2007 at 5:46 am
Thanks for the post on my blog. I can’t say I know much about this topic. I do however, feel that if you don’t feel supported in a support group, find a different one. And you know your son better than anyone. Just remember that. He isn’t like anyone else. You can’t compare him. My daughter in Kindergarten was told that she probably had a learning disability. I think she is borderline Autistic although I never had her tested because I was always like “what good will that do?” I know that since I’ve homeschooled her, she has done alot of things the school system said she would not do — read, write…blah blah blah. But her attention span is like that of an ant. I just know I have to take the good days and remember them. I think with any kid, whether they have a disorder or not, you have to let them be individuals. You have to let them think for themselves. If you don’t, they become very reliant on their parents. I know two guys ages 25 and 31 who still have yet to cut the apron strings because mommy still pays their bills and bails them out of bad situations. One of them is married. The wife and the mother in law just do not get along. I wonder why??? Anyway, I hope you find what you are looking for. I often come out of support meetings feeling disappointed. Sometimes I wonder what the point is to them…
5 // Apr 13, 2007 at 8:51 am
The odd thing is, these days many kids are being diagnosed with Aspergers who usually would be diagnosed with regular autism. The thinking seems to be that if the child is verbal, its aspergers, and if he’s nonverbal, its autism. What I’m trying to say is, before the diagnosis of Aspergers was really well known, most people with that diagnosis (or people who had it and never got diagnosed) were able to function very well in society, although they seemed a little quirky! They get full time jobs, drive cars, raise families, etc… they just have to learn more coping strategies than the average person! From what I’ve heard of your little guy, I think many things may be HARDER for him than they are for the typical kid, but I just can’t picture him being dependent on you for the rest of his life!
6 // Apr 13, 2007 at 9:37 am
OK - I am going to try and express myself without sounding to much like a counselor (which is my officail label). Every support group has its own flavor. Not every group is meant for every person. I do think you should talk with one of the leaders of the group and ask if there is another one available - don’t give up because of one experience. A group is a slice of the community - so there are people who are codependant, leaders, givers, takers and I bet there were those there who felt the same as you. Yes they talked about situations you were overwhelmed by - they showed a part of life that you don’t want - and may not experience. The boy is different than their children, their children are not the boy. Judging is not the idea here - I know you and judging people is offensive to you because you have a caring heart - but don’t run from their experiences - let them learn from your fresh perspective -yet learn from their worn perspective. I wonder if you could ask them what their first reaction was when the 18 year old was 9 years old. OK I am getting long here - you and everyone have a lot to learn from each other and life. Anger/fear can be a step toward progression/hope but the choice is yours. Don’t let fear close your eyes - turn it into wide open eyes to truth and move forward.
7 // Jul 30, 2007 at 6:18 am
I have been learning to drive for nearly two years now and have chaged from a manual to an automatic car and have had three different driving teachers. I am now left wondering weather it’s worth carrying bearing in mind I havw Asperger sydrome.
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