Friday, October 08, 2010

It just has to get better

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.


  1. You are tapping into my current mood as well. It is so hard to think about what kids go through these days and I know kids like C have a special challenge. My best friend's 6th grade grandson, who was born with a cleft lip and palate, just moved to Portland this summer and is being taunted, not only by kids, but by THE SCHOOL BUS DRIVER! The meanness of the world is unbelievable. Let us hope that this current, tragic spate of suicides becomes the catalyst for some very serious change. You are a wonderful parent and I have seen you go to great lengths to give C all the tools to thrive, but we ALL have to take responsibility for ALL of our children and, as you say, teach not only our children, but our peers, to take care of each other.

  2. By the way, I think that school bus driver needs to be fired and I have urged the parents to go to the school district with this, but here's the tough part. The boy doesn't want his parents to make waves because he feels it will only make people treat him then as a "tattler"--even worse. Sad. Sad.

  3. My heart goes out to you and your daughter. Life is so tough, no one needs extra burdens from others to make it tougher. We all need to realize that each of us could be that other person, and treat one another as we would like to be treated. Keep trying to do the right thing, keep being the "problem" parent, keep holding others accountable. Thank you for blogging about this.

  4. I'm so sorry Diane. I feel it too. I have been particularly driven to spend more time talking very candidly to our kids about treating others with respect at all times.

  5. Teacher tenure and the unions. The very bad teachers are protected by the unions and newer, more enlightened teachers are not hired because older teachers are just staying employed waiting to retire.

    I know of twenty year veteran teachers still using the same class plan they made 20 years ago. They do as little as possible. Show movies. Let the kids do their nails in class or sleep. None of it matters to them. Any pride in their work died long ago.

    I have an Asberger's coworker (college degree) working at the greenhouse. A delightful guy. A bit quirky but my daughter (an autism case worker) explained the quirks and now I understand what was confusing me. He has an amazing wit and gentle way about him.

    There are excellent professionals (like my daughter) who try very hard to work for the best interests of their clients. My daughter has been blocked from entering several schools because as a trained teacher she was pointing out the things that were being done (problems, lies, indifference). This is the way the EXCELLENT schools and HIGHLY paid teachers in my town are protected. Keep the case managers out of the schools. And the real crimes happen when the kids turn 18.

  6. Thank you for sharing Diane. Your story (and so many similar ones) go straight to my heart. I'd love to just send you and C a big hug and say that you are doing the best you can and that in itself is wonderful.