To celebrate, I made 16,000 Mennonite homes across Canada aware of my children's autism. Well, okay, that wasn't the point: it was my first ever editorial, a piece on Easter and suffering for the April MB Herald, entitled "The paradox of the beautiful mess."
I hadn't even told some of my closest friends that G. had graduated from being my "typical yet difficult" child to autism spectrum kid 2.0.
(In the editorial, I said both my kids had Asperger's, even though G.'s diagnosis is pervasive developmental disorder - not otherwise specified or "pdd-nos," just like K.'s was at first, because, as I've already shared, that diagnosis means nothing to almost everyone. And I avoided "autism," even though the new diagnostic manual will abolish "Asperger's" and "pdd-nos" in favour of "Autism levels 1, 2, and 3," since outside the disabilities community, "autism" is a big scary word with all kinds of stigma and preconceptions. I don't want people thinking my kids moan and headbang, when in reality, I'm the one doing most of that.)
We received G.'s diagnosis as a Christmas present in 2009. It was hardly a shock, since from the time her big brother was diagnosed, every specialist K. met would look over his glasses at her to see if quirky ran in the family.
But when we started looking for help for G.'s behaviour when she was 4, they all planted their feet at the same miserable starting block as they had with K.: bad parenting. We'd already proven ourselves as good parents to K., but that was the problem; obviously we were so involved with him, that she was neglected. Or perhaps we'd let her learn inappropriate behaviour from him.
We had to take a myriad of parenting classes, not for our benefit, but to demonstrate that we weren't her problem. Could we ignore G.'s interruptions and stay calm through her tantrums as directed by the behaviour specialist, practice child-directed play times prescribed by the Building Blocks of Attachment program, and use the proper authoritative tone and time-out techniques of Triple P? We could. Were we being consistent? Yes. But G. still kicked us every time we told her to put on her jacket? And she still yelled "I hate you" and tried to climb out the window every time we sent her to her room? Oh, perhaps we should look at whether there's something going on for G.
Ya think?
After a couple years of bouncing from referral to referral, all of which I knew weren't what we needed but might lead us through the system to something helpful, we finally got to a specialist who didn't look on me as medically unstable, negligent white trash. (The fact that I cried in front of a nurse when she told me I had to wait 2 more hours till breakfast the morning after K. was born is permanently etched into my medical history and always comes back to haunt me. After 24 hours without food or sleep, and suffering unimaginable pain, a few tears did not mean, as the social worker sent to my bedside implied, that I was in danger of killing my baby. A nurse, perhaps.)
Because I'd had years to accept the possibility of another diagnosis, or because I'd been there/done that with kid #1, or because life just keeps going, I didn't really grieve the second time around. Part of the reason was that other people didn't give me the space: they either blushed and stared into the distance as if I were discussing my bathroom habits, or reacted as if this were nothing more than a cold. And I was more afraid to disclose this time, so I didn't give others much space to respond to the diagnosis either.
The only time I think about having all my offspring on the spectrum as tough luck is when people talk about their grandchildren. If I had another kid, I'd have a greater chance of my family living on, of someone someday having my eyes, passing on my photos and stories, saving my teacups in their hope chest, or doing a Grade 3 research project on great-great-grandma Ange. A small part of me felt like "trying again," but genetics, energy levels, and present demands being what they are, that wouldn't be a wise move. And I really shouldn't place limits on my dreams: if I have no trouble believing they can overcome their attentional difficulties and succeed in college, who's to say they won't get married and raise a family?
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| If Captain Kirk can tie cosmonaut Yuri Gagarin for the rank of #6 most popular space hero, then anything's possible. |
I'm so glad I'm aware of autism. But I'm still not sure how I feel about making another 16,000 Mennonites aware of it.
4 comments:
I discovered your blog after my mom told me about your recent editorial in the MB Herald. I read it online and thought it was great! I appreciate your perspective - living with the ongoing grief of a child who lives with Asperger Syndrome definitely is a paradox. I like to think of it in terms of God redeeming what seems to us is unbearable - He has the wisdom and power to bring unexpected, unimaginable good out of a bad, painful situation. Our son who is now 31 was diagnosed when he was 21. I often think back to how I'd respond to situations differently if he'd received his diagnosis earlier and if I'd known what it was that we were dealing with. However, even in the midst of the painful memories and the grief we still deal with, I am thankful for the experiences we've had to share with other families who were going through the same experiences as we were. I was wondering if you and your readers know about Asperger Manitoba Inc. We started as a support group for parents of adults with AS but incorporated in 2004 and now we offer support groups for parents of children as well as parents of adults. We also run social skills groups for children and adults and other groups and activities. In October, world-renowned AS expert, Tony Attwood will be at our annual conference. You can check out our website if you'd like to know more. Thanks again for so eloquently sharing your experiences and perspectives on this journey of parenting a child with AS. It's wonderful to read the writings of someone who "gets it!"
Thank you, Bev. I have heard of Asperger Manitoba. I attended a panel discussion of young people from Asperger Manitoba at the Temple Grandin conference. I was so inspired by their courage and touched by their comments about the difference their mothers made as their biggest supporters and advocates. But at the time K's diagnosis was pdd-nos, and I asked at that conference if Asperger Manitoba could help him someday with that diagnosis, and they said no. Now that the diagnosis has changed, I've been meaning to look into it again.
Thanks for your reply, Angeline. I don't attend the parent support group for parents of children with AS but I'm sure you'd find their meetings helpful - from what I hear, they have a great time sharing and supporting each other. They're also planning more and more social gatherings for the kids and their families. You can find out about the events on our website www.asperger-manitoba.ca. Several of the moms in the group are on AMI's board and one has her own blog www.welcome-to-normal.com. You'd probably like her perspectives too.
I'd be interested in a conversation with you (and others) about how the church meets the needs of individuals with and families of people with Asperger Syndrome. I've been thinking about that off and on for a while - how do you think the church is doing in that regard?
That depends very much on the church, I'm sure. We've been in the same small church since before K was born, so people in the church know K and G first, autism second. My pastor's wife told me when she hears "autism" or "aspergers," there's no stigma or medical definition in her mind, only images of two precious people blurting precocious answers during children's feature, or singing at the top of their lungs while jumping up and down during the worship music. We've been given a supportive community, but I have friends who haven't have such positive experiences.
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