I am in a place of despair these days, and I can't seem to get myself out of it.
It started, I think, when I read
"House Rules" by Jodi Picoult. She's one of my favorite authors and I usually leap on each new book of hers as it comes out. But this one I delayed, because I knew that it was the story of a young man with Aspergers who is accused of a crime... and there are times when I just can't read any more Aspergers stuff. We LIVE Aspergers stuff, and sometimes I just don't need more. Anyway, I read it, finally ... and while the writing was up to Picoult's usual excellence and the story was engrossing, I just found it a bit too gut-wrenching to read a novel with example after example of how that character's Asperger's traits were misunderstood with dramatic consequences. It got me spinning around the usual cycle of doubts and anxieties I carry as the mom of a teen with Aspergers -- are we doing enough? Would additional interventions help? Are we doing so much that the number of people she sees in a month make her feel like there is something wrong with her? I usually keep these worries in check, and feel confident that we're doing the right things, but sometimes the doubts are worse than others.
I've also been reading
Aspergers in Pink by Julie Clark, an excellent look at how Aspergers presents so differently in girls and why it is so frequently misdiagnosed or undiagnosed in girls. The book is written by a parent who details her Aspie daughter's experiences through 6th grade, which were largely characterized by school officials and teachers who refused to accept the careful diagnosis of medical professionals and instead chose to believe that the child's behaviors were the result of "spoiling" and bad parenting, and who simply weren't able or willing to provide the careful support that the child needed. It didn't exactly mirror our experiences with our daughter, but it was similar enough to cause more stomach-twisting. It reminded me of how it felt to be treated as the problem parent, asking for more help for a child who felt lost and unsupported at school, and how often I went in for meetings or to check in with teachers after school try to help them understand what my daughter faced in school each day. The book ends with the daughter in 6th grade, with an unusually good teacher and some helpful support people -- but I had this sense the whole time of "just wait until middle school." Classes get bigger. Teachers get, I think, less connected to the kids. The social world gets far more complicated, and some kids get so much meaner. I worry about that little girl, and I've never even seen her.
And then there was the horror of Tyler Clemente's suicide, after being cyberbullied and outed as gay by college peers. Fortunately, the swell of support and concern and awareness-raising going on has provided a positive response to an intolerable situation (not the least of which is the wonderful
"It Gets Better" campaign started on YouTube by writer Dan Savage). Still, each time I hear a reference to this poor young man, or to any of the other teens and young adults who have struggled with (or succumbed to) suicide because they were taunted about their differences, I want to cry.
So I am feeling just heartsick these days. I read blogs from parents of kids with Aspergers, and by teens and adults who have Aspergers or other autism spectrum issues, and I follow forum discussions that address how to help kids, how to get them through school, and more. I am looking for support, I know, and hope, and a sense that things will get better.
But you know? Lately all I seem to read are message from parents struggling to get teachers to understand, fighting to get special ed services for their kids, even litigating in some situations to have their children provided appropriate educational services. I've read horror stories -- more than you can imagine -- of elementary school teachers calling the police when an 8 or 9 year old boy is having a meltdown -- which meltdown often resulted because the staff didn't understand how overwhelmed and mishandled the poor kid was in the first place. Sure, I'm finding stories of wonderful occupational therapists and amazingly sensitive teachers, and miraculously kind peers who accept kids no matter what. But I tell you, lately those good stories seem few and far between. I've had to back away from those lists and websites for a bit, because I just can't take any more right now.
Just this past week, my daughter revealed some bullying incidents that happened two years ago. We've suspected that some of that had been taking place, but it's only now, two years later, that she could bear to talk about it. She's held those in all this time, and she's internalized some of the mean and hurtful things that were said to her, in ways that will take a long time to heal. It's why, she's revealed, there are kids she doesn't want to see around town, why she doesn't want to go to the barn on Saturdays to groom horses with girls who used to be in her class, and why she refuses to even consider taking a class at the local high school.
My daughter is doing pretty darn great, all things considered. But the whole situation makes me so angry, especially when I think of all of the times I sat down with a certain 7th grade teacher to talk about how unhappy my daughter was, how she said repeatedly that she didn't feel safe in class, and how the teacher didn't intervene when the kids treated each other badly. I think about how surprised the principal was when I went in to complain about things I'd personally witnessed -- kids throwing pencils at each other in class, one kid wrestling another kid to the ground to get a paper away from him -- in the classroom, in front of the teacher -- And all of that was in a theoretically exclusive private school where there were TWELVE kids in the class. Twelve -- that's all that teacher had to keep her eye on. Lord, it makes me want to spit. Or vomit. Or something. We took our daughter out of there midyear, by the way.
So I have found myself feeling just sick over the last few days. Why do the so-called professionals we trust with our children's formative years have so little understanding of how important it is to honor the differences in every child? What is it about the way our society is raising children, that so many of them learn that differences are to be mocked and excluded and demeaned? Why are our schools so entrenched in doing things the way they have always been done, even when it's clear that those patterns don't work for so many kids? Why are parents who go into schools with concern about their child and asking for help from teachers and staff, treated with suspicion and disregard?
I know I will feel differently in a few days, more hopeful, more positive about any new awareness helps, and how many bright, caring, tuned-in people there are who are trying to make changes. I know that our daughter is doing beautifully these days, and she's blossoming and becoming more independent and capable every day.
But I tell you, it all makes me feel very sad. Kids are so precious -- we not only need to take care of them, but we also need to teach them to take care of each other.
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by Judi Warren Blaydon (C&T Pub. 2010). Because of the subtitle, I wondered when I first picked this book up whether it'd be another book on using photos transferred to fabrics. But no, I was pleasantly surprised and impressed. The main idea of the book involves choosing a few photographs, cutting them up to assemble a pleasing collage, and then using the collage as the basis for a quilt.
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