Friday, May 23, 2008

Fine lines

In our runs and reruns up and down the road between here and Baltimore (yes, I know Stimey, all those miles and I haven't stopped in to meet you. Bad Joeymom. Bad. No doughnut.) my mom and I have been getting in some good chat-time. We talk about Joey a lot. We talk about autism. We have slightly different views of autism, but I think both perspectives are good for helping Joey.

One thing we've been talking about is the fine distinctions in our experience of autism. Where is that line between social construct and "real" disability? At one point does one take stock of limitations and deal with them?

I know that there are people- including several of you all- who believe that all disability is social construct. I find that view interesting, and sometimes helpful. However, it isn't jiving with my experience. If Joey was perfectly happy and fulfilled not speaking, not being able to interact with his peers, not being able to self-regulate, well, maybe I would think differently. But I see the frustration. I see the struggle. I see the work he puts in, the enthusiasm, the desire; and the (very upsetting to him) fail. And the increasingly rarer Epic Fail.

For us, Joey is Joey. He's my son. I want to help him learn to be happy, help him succeed, help him be the person he wants to be. He's only six years old. Helping him become that person is part of my job as a Mom. Choosing who that person will be is Joey's job. If he wants to be a marine biologist and swim with dolphins, then by God, I am going to do everything I can to help him succeed in becoming a marine biologist and swim with dolphins. What will he need to succeed? How can I help?

I have navigated the world of academia. We can argue about how social skills should or shouldn't be necessary, but they are. Speaking shouldn't be a requirement, but effective communication is a must. Melting down because he can't have a blue folder is not going to be acceptable behavior when he reaches college or grad school. He is going to have to communicate to his professors that he understands what they are trying to teach him.

Enter occupational therapy and speech therapy. OT helps him self-regulate, helps him learn to interact with others, learn how to control his own body and perform important tasks for daily living, such as following instructions and coping with overload. Speech therapy should never be just about speaking- it is about communicating. For us, it is more about speaking because Joey now speaks, but I'm firmly in the camp of it being about communication first and foremost. A speech therapist who can't use AT isn't very helpful for an awful lot of kids who need it to communicate, or even springboard into speech.

When we start talking about the need to teach Joey to speak and interact, remember most kids learn these things by natural imitation and assimilation. Most kids do not have lessons in how to ask another child to play on the playground. They figure it out by walking up to other kids and testing some strategies they saw other kids or adults use. They figure out which ones work best for them, and go for it. Joey has lessons, practicing carefully with other children in staged and controlled situations. He never figured out how to do it on his own (though he tried hard- he just loves other kids!)

As Joey's communication skills and social skills increase, his ability to imitate and assimilate also increases- he can figure out more things on his own, because he gathers tools for figuring things out on his own. Just as he learned to speak initially by imitating Oobi- then shifting the words or inserting words to fit what he saw around him (making the scripting nearly transparent to those not familiar with Joey and Oobi)- Joey incorporates the rehearsed interactions and alters them to fit the situation at hand. Slowly, the rehearsing will become transparent, as it does for us all.

So where is the fine line? Is Joey disabled, or is here a social construct that results in his own frustration? Is apraxia a real disability, or just a label we slap on him to keep him in special ed? If it is just a social construct, should I be able to break down that construct and have him be happy- or is it instead a real disability, that needs to be addressed (usually by therapy) and supported (via accommodations and educational strategies)? If I tore down the construct, would Joey be happy? Or would he remain frustrated with his struggle to communicate?

Perhaps I should take up the issue of how many different ways we can view a single person, how many facets we can juggle, how we can use a variety of lenses and perspectives, and still be considering the same person. Joey is Joey. When I walk into an IEP meeting, what does that mean? When he crawls into my bed at night? When I take him to the zoo? When I take him to the store? When I visit him in school? When he sits down to eat his dinner? Yes, he remains the same Joey, but I have to consider different aspects, different needs, different roles.

After all, I'm a mom, a wife, a daughter, a blonde, a niece, a sister, a Virginian, a professor, a student, a woman, a rater, a score leader, a Caucasian, a chairperson, a PhD, a researcher, a genealogist, a citizen, an American, a patient, a customer, a client... what is real? what is a construct?


abfh said...

My response is here.

I'm not picking on you -- it's just that your posts have been raising points that could use wider discussion.

Joeymom said...

If we don't discuss, how will we learn about other points of view?

Stimey said...

This is interesting. You always make me think. And let me know sometime when you're en route to Baltimore and you can stop by for a dinner playdate or something!