About five years ago I went to a combined autism/Aspergers support group, and found that almost everyone there fell into the Aspergers side of things. As hard as I tried, I couldn’t relate to their problems – “My son will NOT stop talking about the flags of countries around the world.” “Well, my daughter can’t understand what personal space is…I’m so tired of my tennis games being interrupted when the nanny calls to complain.” So, you get the picture. There was a separate respite care program run out of the same location, and Stephen seemed to do okay there, but after a few meetings of the “support group,” I decided that it wasn’t for me, and we stopped going.
So, in the interim time, I’ve found support in many places – friends, family, even co-workers at times, and I’m grateful for it – but it just never quite filled that space inside me. That place that cries every day with the chronic sorrow of having this wonderful, terrifying child…unless you LIVE with that, you don’t understand, and you can’t. It’s just not possible. I have yearned for another mom to talk to – someone who knows how the search for extra-large but absorbent pull-ups can dominate your life; someone who GETS the fact that hearing a stomach virus is going around at school practically brings on a nervous breakdown because you just can’t deal with your kid getting it and then vomiting anywhere and everywhere; a mom who knows the heartbreak of seeing her child get more and more overweight and feels powerless to fix the problem…
Last fall I heard that the autism/Aspergers group had split, I felt some hope. They took some time off for the holidays, and I waited to hear about the next meeting in the new year so I could FINALLY go and get connected. By the time the group had reconvened, they had been recombined.
I was still skeptical, though, in my cynical way…and I came pretty close to flaking out after I got home from work last Friday. I thought about how nice it would be to change clothes and do nothing. But, I told myself that I couldn’t keep complaining about the lack of support if I didn’t go out and look for it. So, I packed Stephen up, we went to McD’s, and headed for respite care/meeting.
He went in fairly willingly – the room was much like a schoolroom (in fact, it’s in a church so it’s a Sunday school room, I guess). There were a few kids there with various types of issues, but Stephen seemed fine. I gave a few instructions to the very capable lady in charge, along with my cell number, hugged Stephen, told him I’d be “right back.” He replied “Back…” and went off to explore the room. I went down the hall to the support group meeting.
I met the leader of the group, who recognized my name from her email lists, and talked to her for a few minutes about why I had stopped coming years before, etc. She seemed to really sympathize, and we talked for a few minutes about the HUGE chasm between autism and Aspergers. My cynicism meter dropped a notch as I took a seat at the table, had a cookie, and waited.
The meeting started with a presentation given by a local parks and recreation director who’s in charge of a “special needs” after school and summer program. The longer she talked, the further my mind slipped away. “If your child really wants to be on a swim team, we can help you deal with issues that might come up…or, maybe your daughter wants to take ballet but feels uncomfortable in groups…your son might want to participate in volleyball but the noises in the gym are difficult to handle…” This went on for 30 minutes. People asked questions and the very enthusiastic lady answered them.
Part two – a representative from a local autism/behavioral treatment center talked about the summer camps they’d be offering – “We’ll have lots of fun themes – maybe we’ll do karate one week, exploring space the next week…” Fun, right? Oh, and the only stipulations for children attending this center? They can’t need one-on-one attention, and they must be potty-trained.
All righty then. Zero for two.
But by then, the parents around the room were enthusiastically regaling everyone with how well their son/daughter/grandchild does at this center, how great the staff is, blah blah blah. The leader of the support group said, “Well, thanks to everyone. I know some of you had some issues you wanted to discuss…” I was mentally rubbing my hands together – now, this is what I came for…
One mom said, “Yeah, I had a question for the person from the center…what if my typical child wants to come to camp with her brother? They’re so close…” and as the question was being answered by the center’s rep, I thought, “Wow, I feel so bad for you…” UGH!
After that, there was a brief pause…I waited for another chatty person to speak, and as I was taking a breath to ask a question, the group leader clapped her hands, and said, “Okay! Thanks to our presenters, and thank you so much for coming!”
WHAT?!!?!???!
I sat there in shock. People were gathering up their things and LEAVING. I stood up, tears immediately running down my cheeks and said, “WAIT!...Wait…is there ANYONE here whose child is NOT high-functioning?” I looked around at the group of 25 or so. Silence. I was either met by blank looks or the tops of peoples’ heads as they suddenly became fascinated with their footwear. I said, “Is there NO ONE here whose child is like mine?” I pointed to one lady and said, “Ma’am, I’m sure your child has issues, but I can’t relate to her dream of riding horses and competing!” I looked at another woman, “And your son, who wants to be in a THEATRE group? My son still wears a DIAPER, and he can’t TALK to me!” I looked around. “I’m not diminishing your issues, but I cannot relate to ANY of you!”
People started muttering and then talking amongst themselves and some were very uncomfortably sliding toward the door. After some awkward glances in my direction, most people left. I stood there rooted on the spot. Two women finally felt bad enough for me that they came up to offer a bit of sympathy, tempered with “Yes, our kids are considered high-functioning…but when we first came to the group they weren’t doing as well…so we can sort of understand how you feel.” One of them handed me a slip of paper with the URL of an online support group for our area. I have joined, and will contribute if I can...but a great deal of my "social life" is on-line - I want a real live person to talk with about this stuff. They assured me that there WERE parents of other more seriously autistic kids online…I wondered aloud why they weren’t at the meeting (because some of their kids were in the respite room – I saw them!) and they said that it’s hard for them to get out, etc. I said, “Well, that’s what the respite is for, right?” They said, well, yes… “Maybe they’ll come next month!”
Yes. Maybe they will.
Will I, though? I told the leader of the group that I was disappointed, and she seemed to understand. I told her on the survey I filled out that I’d be glad to be in touch with other parents whose children were more similar to Stephen, and let them know that I would come to the meetings…beyond that I’m not sure what else to do.
I drove home in tears. I got home and told David about it, and cried some more. It seems that everything requires a fight, a struggle, a battle of some kind. I have been searching and fighting and looking for resources since Stephen was two years old. Yes, I’ve found a lot of help. David has researched and read and studied. But it gets tiring, you know? Always looking and looking…
I have found some new sources of support and contact via Facebook, which is great. However, the local support group scene turned out to be much, much ado about nothing. The respite care might come in handy in the future, if we wanted to take Kerry to a movie or something, so there’s that.
Wearily we go on. The quest continues.
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