01 November, 2012

Autistics Speaking Day

For the most part, most people, would say that my son is non-verbal. That is a clinical diagnosis. I use the term when I am explaining his needs to a caretaker or an education professional. I hate saying it though, not in the "we should use the term pre-verbal instead of non-verbal," but more in the way of, "I can't believe that people don't actively recognize that there are many, many ways to communicate."

Jake has a lot to 'say.' He has opinions, and finds things funny. He has preferences. He shows varying amounts of affection depending on who you are. He wants to go some places and not others, and can tell by where we are driving if we are getting close to camp, or home, or the Lake House, or Tahoe. He is clear about when he is done with a situation. And he has all of this without being "verbal."

The more we interact with Jake as if he does have something to say, to no one's surprise, he does have something to say! Treating him with that respect, is uncomfortable for some people. Without the feedback that he has heard you and with no verbal response to gauge when they should begin the next bit of story or query,  even well-intentioned people can feel like they are dangling there, unsure of how to move the conversation. Those people who do address him directly in conversation, however rare that is, even those conscientious people wait for an answer from him. They, we, the world, talks at him. And then they talk to me about him, in front of him.

Some of it is just going to happen because of logistics, or pressing need, or the fact that he is still a young boy. Some of it happens in the exact same way with my daughter who is filled with words that spill comfortably out of her mouth. Talking about your children in front of them happens, and giving an answer for your kid probably happens more than it should. Truly we are just an impatient society, always ready to jump to the next thing; get the answer, move on.

But we can "listen" for Jake's responses if we pay attention, and I should do a better job of explaining some of the ways he communicates, at the very least, so others can benefit from his humor.

We've never done this before, so I am still learning. Certainly my feelings have changed over the years from just wanting my son to talk, and thinking that saying words aloud was the end game.  Now I understand that the really important thing is that Jake be able to communicate his needs. It doesn't matter how he does it. Maybe there will be a device, like an iPad, that helps him string words together so we can easily read them. Maybe he will use more gestures. Regardless, I no longer think that there is only one way to "talk" and I realize that really listening requires a more open mind.


Last night was Halloween, and we had planned to trick-or-treat through the neighborhood with a group of friends with Jake walking a little, then using his wheelchair. We would be accompanied by his aide. Knowing that he gets tired earlier than a lot of kids, we already had a built-in escape plan for Jake, with an early departure via car should he want to go home with his aide.

We got the kids ready in their costumes, and as I was gathering the rest of the items we would need, flashlights, bottles of water, extra bag, lightweight jackets, Jake whooped once then ran down the stairs, in full costume, and got into his bed.

Face down in the pillows I went to talk to him. I explained that he would not be in trouble, and no one would be mad if he decided not to go out house to house. I waited, sitting there, then offered that if he did want to go, he needed to get up with me now because we had to meet people, and that the decision was his. Perched on the edge of his bed, I waited, watching his back rise and fall calmly as he breathed.

All at once he sat up in bed, so precious in his Star Wars get-up, and looked at my face for a moment. Then he flopped back down on the bed and buried his head under the pillow.

Okay. Got it. No trick-or-treating.

As his sister and I left the house his aide was helping him into more comfortable sleeping attire, and I heard a familiar, happy squeee and the sound of the headboard hitting the wall as his almost teenager body slammed back onto the mattress. Reports are that he was sound asleep within ten minutes.

In the past I would have a) gotten him out of bed and walked him to the car, 'encouraging' him to participate in this annual ritual that American children cherish, or b) allowed him to stay at home, but walked away feeling like I was somehow cheating him by not including him in the outing, and no matter what I would have c) felt guilty that I was forcing him to do something, or felt guilty for abandoning him (and ultimately making my night easier, because most of the world is really not ADA accessible, so wheelchairs and Halloween do not go together very well.) In the past, I would have decided what Jake would be doing based on what I felt was the best decision, calculating everything from my point of view.

Instead, I left the house confident that he made the decision. I asked him, I double checked, I waited for an answer. He told me clearly what he wanted to do...and then I honored his wishes without attaching any frustration, or blame, or guilt, or sadness.

His communication was very clear. He didn't need to spew a soliloquy for me to hear him, I just had to know that he had something to say.

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