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.

A night in the life of autism

Tonight we went to our church’s version of vacation bible school called “Party in the Park”. Our church’s building sits, quite literally, at the crossroads of two very different neighborhoods in our Midwestern Capital City. The old, graceful & stately mansions immaculately maintained by doting and well-to-do movers and shakers are mere blocks from one of the poorer, blighted and tougher neighborhoods in town, and our church is right smack in the middle. This church has worked hard to welcome and serve all, and the rainbow of people in our pews each week reflects this diversity (which is one of the main reasons we are members.) Instead of offering a VBS for our congregation and asking congregants to invite friends, we put out tents in our parking lot and the nearby park, serve dinner, provide live music, play games and say “everyone come – this is a neighborhood party - join in the fun!” We get a good turnout, and it is wonderful to see all types of people under the same tent, eating together and conversing, as if this happens every day.

And it can be noisy, crowded, and overwhelming.

Initially, the noise reducing headphones were left in the car because when asked, T did not want them. But as we got to the registration table and heard the band playing under the large tent, the headphones were not nearly as unwanted as they were moments before. Back to the car we trekked, the headphones were retrieved, and we returned to the tent to eat dinner. It was just noisy enough that T did not eat for a while, but just sat there looking around. After some prompting, he did eat. We are thankful that he is a good eater, and picnic fare is a pretty safe & acceptable bet for him.

Then came music time: group singing. This is such a frustrating curiosity to me…we go into church and he almost insists that we sing. “Sing!”, he requests, “sing!” But anywhere else, chances are that it will not go well. In some situations it is okay, however, but it seems that many attempts at desensitization need to occur before he is okay with it. If he does not expect it, or if he’s already in a stressed state, if a group starts singing, we are in trouble. And the leader began the song, and so did the usual breakdown.

What happens? When he is stressed, he repeats words he has heard when he has been stressed before, and will repeat them insistently, looking me directly in the eye until I repeat them back – which of course, only makes it worse. “Stop playing with the microwave”, “Be gentle with sing”, “be gentle with Happy Birthday”, “be gentle with the phone”…over and over, until inevitably he cries. I haven’t figured out how to break the cycle yet. And I didn’t tonight.

This absolutely breaks my heart because one of my fondest memories of camping during the summertime was all the singing. Our church went on a week-long “family camp” and after each meal we’d sing and sing out of mustard yellow songbooks filled with peace-loving, fun songs - I learned some great singer-songwriter songs during that time. And we have a family that sings and would love to sing the Doxology before meals when we are all together, but it is not possible. I long to stand around the piano at Christmastime and sing carols with my family, but we can’t. And that makes me sad, so sad that tears are welling up as I write this. I love to sing, I love group singing, and my son hates it.

Except in church. But this wasn’t church and it certainly wasn’t the sanctuary, so it was NOT okay with T tonight.

We took a break, away from the crowd, and he cried for a while on my shoulder. Then he pulled away, because of course, I can’t hold him for too long.

After the tears dried and the singing was done, off we went to the arts & crafts table. Another struggle. He doesn’t do arts & crafts – it requires lots of listening to directions and using fine motor skills that he just doesn’t have yet, so these are always frustrating events for him. But I carried on, hoping that with hand over hand guidance and Mommy’s TLC, we’d get it done. Nope. More repeating the stress phrases, more tears. And by this point, I’m fighting back tears myself. How much work does this has to be? How far do we push inclusion when it does nothing but stress him out? We leave the tent with a dreidel that I’ve made with his scribbles on it, but I hang on to it as a trophy of our noble attempt to participate.

Then, things finally look up: game time. He played his first game of Corn Hole, and did a nice job (assisted) with taking turns with a bright, handsome kid from the neighborhood (and got two of four beanbags in the hole.) Bubbles are always a hit, so we played with those while the other boys played kickball. Seeing how much fun they were having, I took T over to watch the game, and then decided to get him in line for his turn to kick. Why not? How much more stressed could he be, honestly? When it was his turn, the ball was rolled to him, and he waited until it stopped (he’s not ever tried kicking a ball on the move like that), but then gave it a good kick and I took off with him in hand to first base. We made it! And he was smiling and laughing all the way. The next boy went, and off we went to second base, then third. We made it home on the next kick, me pulling him along and him laughing and laughing. Evening salvaged.

The evening finished with chocolate chip cookies for all, and then it was time to go home. And we do this all again for two more nights. Perhaps we’ll skip the group singing and arts & crafts. But if I do, will he ever learn? If I don’t give him the opportunity and stretch his comfort zone, how will he ever acclimate himself to these situations? How much of a childhood does this kid have to miss?

So I will carry on.

If not with this congregation, where?