Tell Me A Little Something

Jake is considered non-verbal. I used to say pre-verbal, but then I realized that was just as insulting, and probably less accurate, since I do not expect him to speak in a clear manner that will be medically or academically recognized, and quite frankly, communication has always been the goal, not speech. But he does say words occasionally; they pop out of nowhere, and they are clear and relevant, and almost always said with a wit that indicates he has a lot going on inside that big brain. He responds to people speaking in Spanish, at about the same level of interest as when he is spoken to in English, so that makes him non-verbal bi-lingual, which is great, because it would be nice to have someone in our house be fluent in Spanish. Whatever way you call it, Jake does not share his thoughts in spoken sentences.

So I do my best to hear my son. I listen to the way he is tapping his hand on the counter to know whether he is bored or wants more of something. I hear him shuffle through the night around his room, having had his blankets fall off the bed, or become too entangled for him to wrap them around his body. And when I cover him up again, hoping that the fleece blanket will stick to his fleece pajamas, I can hear his "thank you", said with his own little chirp, that tells me he is happy and that is all that he needed. I know what joy sounds like. It can't even be typed, but there is a sound that Jake makes as he is set free from the house and let loose upon the sunshine of the day. That sound makes everyone smile. We know what "happy sounds" are. We look forward to the "doot doot dooot doot" part of the evening lately when he wants to wrestle on the couch, and laughs a lot.

It's harder for me to hear him in distress. It hurts me, several times maybe, once because I am his mother, and I am supposed to feel an ache which calls me to make my child okay when he cries, or he shows signs of pain in his voice. Then it hurts again, not exactly because I am irritated by the shrill sound he is making, but because of the tremendous disappointment I have in myself for having such a low tolerance for this part of his voice; I want it to stop because I can't do anything well while it happens, including finding a solution to soothe his urgency. And I am hurt again, because I have not figured out a way for Jake to communicate his needs more efficiently, and thus feel I have failed him. And then again I am pained when I realize that I have made his distress all about me, when no matter what I am feeling, it must be immeasurably worse for him not to have a way to communicate what he needs to me, or be physically able to fix his issues on his own. Distress is hard, but we are working on it, working on asking the right questions up front: "Does something hurt?" "Is it your body that hurts, or your feelings?" "Do you want medicine for your head?" And generally, perhaps because there is better incentive, Jake answers by touching my hand quickly so he can get what he needs.

What's interesting is trying to figure out how to hear him in a regular moment... not one of great joy or sadness; it's difficult to understand his side of the conversation when he is just being. When he is quiet in the car with me, I am often quiet too instead of asking him questions about his day which I know he cannot answer. I don't narrate the world around him as I did when he was a tiny boy, and everything was new. So we ride in silence, or sit in the quiet house when it is just the two of us. Most people don't think of me as the quiet type, but I admit that being alone with Jake can be so very calming because I am not talk -talk -talking the whole time.

It is always a relief when we figure out, in retrospect, what Jake has very clearly been telling us. We went to a restaurant the other day with Descartes' parents, and as we were getting settled, Jake half stood up, and made several rather large noises. He was reminded to use his "quieter voice" inside, but he insisted once more on calling out. That's when we saw Papa turn and walk towards us and his seat. He was joining our table, and had walked past us. Jake had seen him as he passed, and began calling out as he headed for the door. We had missed him, but Jake hadn't. Once we understood, it was so obvious that he had been calling out, "Here! We're here!" Jack sat happily, for the rest of the lunch once we were our little group again.

We all had a good laugh, and apologized to Jake. I find myself apologizing to him a lot, for not listening, for misunderstanding, for not understanding at all. I'm hoping that he will continue to know that we are all trying.

I know we approach his sounds and behaviors with a different level of respect than we used to. I expect that he is trying to communicate something when he comes to me, because it is obvious to me now, that separating himself from whatever he was doing, so he could be right next to me is intent, and if you can't really call out , "Hey Mom. I need you over here." you would need to walk on over. So when he takes my hand, I go where he leads me... I am excited to know what he wants to have happen next.

At a busy toy store last week we wandered the aisles looking for the perfect gift to give to a little boy. Rows of books, and stuffed animals, toy trains, play structures, and tricycles, this place has it all. After about half an hour, Jake extracted his hand from mine, but did not shoot away in escape mode. Instead, he took my hand, and I told him I would go with him where ever he wanted. He very calmly led me to the back of the store, to an aisle we had not walked down, but to a section you could see from where we had been looking at games earlier. It was a row of car seats. He walked over to the largest one, and started to sit down, or pretended to, or something. I asked, "Are you trying to say you want to leave now?" He said, "Yea-aHHHH." and I congratulated him on such a smart way of telling me without running towards the door, or throwing himself down in a way that would get us to leave quickly.

I looked over and a young clerk had been watching us, gawking really, but I caught her eye, and said, "He doesn't really talk much, but I think that was a very effective way to say he wants to leave, don't you think?" She let her jaw drop a little, and said, "Whoa. Cool."

Yeah, that's what I thought too:

Whoa. Wow. Yeah. Cool. I can totally hear you.

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.

Autistics Speaking Day