Looking forward : Goals and self-advocacy

Two events occurred this weekend that has caused me to start looking forward in new ways for our boy. First was the consult w/ a visiting PhD at T’s ABA center. Side note: one of the most amazing, I-have-to-pinch-myself opportunities that T has through this center is the PhDs that come in from around the country and consult. The head PhD of the center recognizes that he cannot be an expert on every kid and every type of learning style and age that walks through his clinic doors, so he has his trusted and well-regarded colleagues come in to take a look at programs. This Consulting PhD’s particular area of knowledge lies with drawing out conversational language, and that has been identified as one of the main targets for T at this time. He has words, but they are still mainly echolalia and scripting – and we’d all like for those words coming out of him to be more purposeful and conversational. So, Consulting PhD observes T, looks at his weekly program, and starts discussing long term goals for him with T’s consultant. He asked questions like: “What do you see him doing in 5 years? What do you see him doing in 10 years? Do you see him reading in 5? Do you see him using money, buying things for himself?”, and other probing questions. He asked her, but started directing the questions to us as well.

I admit my mind went blank. I know I’m supposed to have dreamed these things, but in all honesty, this child of mine is such a mystery that I have absolutely no idea what to even dream for. I believe with all my heart that this child is a beautiful, smart, funny, capable kid who can learn and love and people who know him and work with him absolutely fall in love with him. But I don’t know about these tangibles. We’ve hoped in the past, trying diets, supplements, vitamins & injections, have seen therapists come and go, teachers disappoint…it’s not that I don’t dream for him, but I don’t allow myself to dream too much. I admit that. I feel that I am focusing on the positive by doing so – I’m not trying to cure him or defeat him – just support him and advocate so that he can be the best that he can be. So I haven’t put specific expectations on him, such as reading by the age of 15 or buying a snack with his own money and counting it out himself by the age of 18 or living independently by 26…I just haven’t thought about that too much. Just keep moving forward, just keep making progress, and let the chips fall where they may. That’s what I’ve thought.

But there is Consulting PhD, saying that if we don’t have specific expectations and goals, then he will probably learn lots of useful stuff, but not in a way that will move him toward anything in particular.

BAM.

Then he said, in passing, “I see him reading in 5 years.”

Okay. Start considering goals. Set expectations.

Then the next day, I attended the Autism NOW summit, sponsored by the Arc of Indiana and an initiative of the national Arc. I had heard of people calling themselves “self-advocates”, but had never encountered any or interacted with them. This summit was a …”two-day event that will include opportunities for networking and relationship-building between stakeholders, families, and people who identify as having an autism spectrum disorder or intellectual and developmental disability; for sharing information and resources related to the area of autism and intellectual and developmental disabilities; and for celebrating the local and regional autism and intellectual and developmental disability community.” We sat around tables and answered questions such as “How do you define self-determination?”, “How do you describe self-advocacy?” & “What is the biggest problem facing the Autism community today?” The parents dutifully replied with thoughtful replies, textbook and research-study supported…then the self-advocates spoke up. After listening to their experiences and their stories, I humbly and respectfully wanted to say nothing else and listen ALL DAY to them. I wasn’t even planning to go to the second day of the summit, but came home to Rob yesterday and said “I think I need to go back tomorrow.” So I did.

This morning was their day, and our opportunity to ask them questions, for it became clear that we are not the experts here. I could go into great detail, but one story stuck with me: a member of the President’s Council on Disability spoke to us, who is himself a self-advocate, and described his evening the night before. He went to his own hotel room, settled in himself (no one did it for him), and decided that he wanted to go out to dinner. So he did. He went when he wanted to. He ordered what he wanted to eat, and even had some treats and dessert because he could. “And you know what?”, he said, “many of my friends cannot make those choices for themselves. They eat when they are told to, where they are told to eat, and eat what is prepared for them.” Then later: “How can we say YES WE CAN! When someone else is in charge?”

I sat in awe of these individuals. I was so inspired, so humbled. And at the same time, found myself in the conundrum of wishing this empowerment for T, but wondering how to access that for him when he can’t tell me that he feels sick, or scared, or hungry. How do I empower him to speak for himself when he can’t? And when we haven’t uncovered an adaptive communication device that works for him yet?

Keep teaching him. Keep at it. Keep him in this center where he has the best chance of anywhere of learning to communicate. And then when he can, I must remember to LISTEN.

So this was a pivotal weekend. I’ve realized that I need to move from the mindset of protecting him to empowering him. Now I need to let that sink in.