Friday, April 06, 2012

Friday: Hi, Ryan!

Wednesday, April 04, 2012

It was a very long day

And you know it is going to be, when the OT comes out and cheerfully informs the parents that today's session was about "dealing with disappointment!" And then, just as cheerfully, tells you that they had an egg hunt, but when the kids opened the eggs, they were full of stuff like paper clips and crumpled paper, and the kids then had to practice saying something nice about the object.

Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.

See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.

We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.

Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.

Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?

Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}

I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?

It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.

Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.

I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.

And none of those challenges justifies murdering a child. Period.

Monday, April 02, 2012

Happy World Autism Day!

Today, we are celebrating my Joey and all our autistic friends, and their wonderful ways of seeing the world and sharing it with us!

I think World Autism Day is a great idea. When I started this blog oh-so-long-ago, it was mostly because I didn't want other parents to feel as lost, confused, and afraid as we did when we discovered that all those quirks Joey had meant he was having trouble navigating the world. We had just learned one of many important lessons in our lives: that autism and disability aren't scary. Joey is who he is, and we love him no matter what labels are used to describe him. In other words, there might be reason to get prepared, to be concerned, to think and research and collaborate... but there was nothing to fear.

Far too many parents are left to make decisions in the face of the fear of the unknown. They are handed a diagnosis, smacked with the idea that their child has more challenges before him or her than those parents might have expected, and no information for how to deal with the news, or to help their child.

We are also on the brink of another challenge: discussing with Joey what autism is, and what it means. Although we don't hide Joey's autism- not even from him- that doesn't necessarily means he understands it. At the end of our IEP meeting today (how's THAT for celebrating World Autism Day?) we were already started to discuss strategies for middle school. We have a year to prepare. Getting Joey to understand himself so he can be better prepared to self-advocate and help us help him is part of that important transition process to the world of middle school (a world that presents special challenges to everyone, autistic or otherwise).

One of the ways we prepare is to read about our friends who have older children, who are themselves going through these transitions and changes, and sharing parenting experiences with other parents. We coming into a moment where it may be useful for Joey to form his own understanding of himself and the part autism plays in who he is, possibly through connecting with other autistic people. We don't know how much of his self-identity will include autism, if any; but sharing experiences with others who have an inkling of how you think makes a huge difference- a lesson I remember from my own middle school and high school years.

So we are glad today to join in the celebration of our friends, our family, all those who understand or want to understand Joey and how he experiences the world. Without autism, Joey would not be Joey. We love Joey.