Just Who Do I Think I Am?

Do you ever have days where you think you just don't stand a chance? Days when you just want to throw up your hands in defeat? I'm having a month like that.

Overall, I would say that I'm a fairly positive person, particularly so when I write or talk about Oliver and autism. In my opinion the real tragedy about Autism is that it is so hard to find positive stories about it in the media. Except of the "I saved my child through the strength of my love and my steely determination" variety. So I try to do my little part to spread positive messages. And that is one reason I'm so happy for the blogosphere: real people telling real stories that show the tremendous variety of human experience in every life.

But lately I've been finding it difficult to remain upbeat.

When we decided to keep Oliver out of school this year I felt pretty good about that decision. We'll work primarily on communication issues, I thought. And so when the school district also agreed to chip in for some speech therapy each week, I welcomed the idea. A few weeks ago the SLP called and we made an appointment and discussed what goals we would try to work on with Oliver this year. I also asked that she do an initial evaluation since we haven't had one in several years. As our appointment date grew near I was hopeful that the SLP's input would help give some focus to our efforts at home -- you know, professional guidence. But I didn't realize that I had such high expectations until they all came crashing to the ground half-way through our appointment.

And let me just say this, I like the SLP and I'm trying not to jump to conclusions about how useful her input is going to be. But it was hard to find anything positive at the end of that first hour. First, she was sitting less than a foot from Oliver while she was administering the evaluation and she was talking at the top of her lungs as though he were deaf. Later, she asked if there was any kind of food item that she could use to get Oliver to sit in his chair. She repeatedly grabbed Oliver's chin and tried to turn his head to look at the photos she had laid out in front of her. And at the end of the session she said that she thought she should concentrate on teaching Oliver common vocabulary by getting him to label pictures.

But here is the thing: I had already spent a great deal of time explaining to her my opinions about Oliver's problems with language and why I think verbal behavior isn't the right approach in our case. I have never really understood why Oliver can't -- or won't talk -- and no one has ever been able to explain it to me either. One "expert" told me that Oliver wasn't talking because he wasn't MOTIVATED to speak. That realization completely flabergasted me until I realized that it was completely wrong. There are so many times when Oliver very clearly wants to communicate with us. When he is desparate to communicate something but just can't. And then there are exchanges like this:

Me: Oliver, what is this?

Oliver: perfing.

Me: These are glasses, Oliver. Glasses.

Oliver: Glasses.

Me: What is this?

Oliver: Perfing.

Me: No, they are. ..?

Oliver: Mmm. (From our studies of the phonemes, this is the sound of the letter M.)

Me: No.

Oliver: T. (Again, the sound that the T makes from our phoneme studies.)

Me: They are glasses.

Oliver: Glasses.

And let me just say that Oliver knows what glasses are. Sometimes he can produce the word on the first try and sometimes he can't. If you pointed at the glasses across the room and said: "Oliver, bring me the glasses," he would know what you were talking about and bring you the glasses. So, in my opinion, Oliver's language problem has more to do with being able to retrieve the right word when he wants to use it. Is this then a neurological issue or a speech issue? Or both?

I don't know the answer. And that is just the point. I don't understand fully what the problem is but I do know that the issue is one of communication, not just speech, and that teaching him to label pictures is like using an eye dropper to water a tree.

Maybe the SLP is on the right track and since I'm not an expert in Speech Pathology I can't say much about that. But I do know, after watching her work with Oliver for an hour, that she is looking at him purely as a non-verbal, autistic child with a set of challenges that are sure to get in the way of her teaching him to talk. She is not looking at him, she is looking at how he "presents". So a big part of me wants to just cancel the services all together. I don't think it will help. I think it will be stressful if she continues her agressive way of working with him.

But then I stop myself and have to ask: Just who do I think I am? I'm NOT an expert. I don't understand why Oliver can't seem to find the words when he needs them. And I certainly don't know what else I -- or anyone else can do -- to help his brain make the connections that it needs to so that he can decode language and understand the nature of communication. And then I get all wrapped up in self-pity because not only do I not know what to do but I also don't believe that any of the experts know what they are doing either.

I'm going to give the SLP a chance. I'm going to sit side-by-side with them and make sure that she respects his personhood and his unique needs and I'm going to refrain from judgement in the short term.

And in the long term I'll try to keep from throwing my hands up in the air. Because that surely never helped anyone.