January 2011

I Still Have a Dream for Autism

by Tim on January 17, 2011

This is a repost of something I wrote for Martin Luther King Day last year. I hope you find it meaningful.

I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.

Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.

Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”

Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.

Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.

I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.

I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.

I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.

I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.

I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.

I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.

I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.

I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.

I have a dream that more money will be spent on services and support for both children and adults.

I have a dream that whenever any of us begins to fall there will always be another to help them back up again.

I have a dream that instead of judging we will take the time to understand.

I have a dream that what unites us will be stronger than what divides us.

I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.

I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.

I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.

I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.

I have a dream today.

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Let Me Out of Here!

by Mary on January 5, 2011

Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation.

Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – someone gives him a task, then if he doesn’t do it in the time period they want, or how they want, or whatever… they take it away! It’s not like at our house, where new toys can sit for weeks before he will even notice them.

They started off rather poorly by making us wait in the lobby about 10 minutes, although we used that time to re-read the little “here’s what’s going to happen” booklet they had sent. The J-man LOVED that book, and especially liked signing “nice” and “nurse” – he would crack up laughing at those words. (BTW, we never actually saw that nice nurse. Maybe it would have helped.) We all went into a little room, and a lady (we’ll call her Connie Chung* because I don’t remember her name) tried to get the J-man to interact with her, while the rest of the adults talked at another table. That didn’t really happen… until everyone else left, and it was just me, the J-man, and Connie. Unfortunately for Connie, she started off with a sorting game of blocks and spoons.

You could just see the J-man light up – THERE ARE BLOCKS HERE!

He spent the entire rest of that session trying to get the blocks. The spoon and block sorting went as follows: he built block towers, and Connie tried to get him to sort. She handed him a spoon, and he put it in the correct box, but when she tried handing him another, he grabbed the handful from her, put them all in the correct box… and went back to building with the blocks. When Connie tried moving to a different task, she ended up putting the blocks away into her little toolkit. The J-man calmly walked around the table, opened her toolkit, and took out the blocks! We had to draw a little schedule, with blocks as the “next activity” to get him to do ANY other tasks. Connie tried getting him to match objects with a picture in a book, but when I told her he did better with words, she tried getting him to match letters… but the letters weren’t objects, it was just “here’s an L… now which one of these looks like that?” It didn’t work, and she wouldn’t move on to WORDS because he wouldn’t do the letters.

Eventually… Connie gave up. Really. Just decided to give up. That right there really described the tone of the whole evaluation to me.

We were sent back to the lobby (there was a playroom, but it was such a disaster area – and I don’t say that lightly considering our house – that the J-man wouldn’t even go in the door!) to wait again, while they set up the room for the other evaluation. This was one specifically for autistic kids. The J-man played with some of their toys, then decided to stack them. Another lady was doing this part of the evaluation. We’ll call her Diane Sawyer (again, no idea what her name really was). Diane did a little better by not having blocks out, but the FUNNIEST part was when she asked me if the J-man would “watch someone do something, then do it himself.” I said, “you mean, imitate?” “Yes,” said Diane. “No, he doesn’t imitate.” She seemed concerned by that. I thought it was a VERY COMMON PART OF AUTISM, but maybe not?

It didn’t take long for the J-man to get frustrated with her, and he asked me for a snack (and maybe a break from Diane!). I briefly mentioned the Sacred Six, and got out his food card. It took a good bit of explaining before the light clicked on, and Diane realized that REALLY, this is only the food he eats. The Sacred Six. They wanted to get him to ask for help, so put 2 of his snacks into containers. He ate some Veggie Straws, then Diane closed the container. He tried to open it, then took it to her to open, but because he didn’t verbalize “help” she refused to open it. So now, you’ve got a hungry stressed out kid, and you’re withholding food. Hello tantrum!

I eventually got him calmed enough to drink, and then he ate more Veggie Straws. Diane asked if I thought he would show them anything… and I said, “Well, he loves to build with blocks.” We had brought his own personal alphabet blocks with us, and he played with them. I pointed out the matching he does with them (not only does he stack blocks with the same letter together, he stacks them in the same orientation, so all the sides match up), and the engineering it takes to build a stack of blocks that high… but again, I felt that Diane, like Connie, had just given up. The J-man sure had.

Tim was still doing the parent questionnaire when we finished at 4PM – we had been there for three hours at that point. Our portion included taking pictures of the J-man’s hands, feet, ears, and face, sometimes with a ruler held up to compare to. Eventually that set him off again, and we ended up with just the J-man and me, sitting in the eval room on the floor. He asked for “pillows” and we cuddled together on the industrial-carpeted floor. I knew he was really stressed, but not quite how much… until he went to sleep. The ONLY time the J-man sleeps during the day is when he is SO overwhelmed that he has to get away, and he has realized that people will leave him alone when he is sleeping.

There was still more stuff to be done, and it was unpleasant at best… but we finished, and left. Thank god.

Tim and I hope that our experiences with studies, and the data collected, may actually mean something someday. We’ll probably enroll the J-man in more studies (ones that involve only observation/evaluation, not so much with the “take this miracle drug” ones). But, not anytime soon. Because at the end of the day I felt emotionally exhausted, and like a bad parent because a) my son was obviously so upset, and b) the study people seemed to think I was lying when I said he COULD do some of their tasks but just wouldn’t in that environment. So that was my part. I also didn’t want to put the J-man through anything like that again. He was overwhelmed by the lack of structure, and kept saying “I want” but then didn’t know how to express that what he wanted was OUT OF THERE.

Maybe that’s something we need to include in his IEP next time.

*One of our “code words” phrases is, when we can’t remember a woman’s name and can’t get past it, “Just call her Connie Chung and move on.” We’re showing our age here a little bit. Do people still know who Connie Chung is?

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My Three Words for 2011

by Tim on January 2, 2011

It’s not too late to choose your three words for 2011, my much-preferred alternative to New Year’s resolutions. I’ve picked mine, and this year it wasn’t hard at all. What my life needs this year is pretty obvious.

Two of my three words last year – proclaim and connect – were mostly focused outward, and they were the two I felt least successful with. My other – bamboo – was an inward goal, and it proved to be the most essential one, far more than I realized at the time.

Looking back on the year and my three words, I got a much clearer sense of where my life is right now. I realized I haven’t done the inner work – all the physical, health, emotional, and creative work – I need to do to get to a place of feeling grounded and strong enough for everything I want to do for my family, to achieve personally, and to work toward for the greater community. So I’m making building that foundation and creating good things out of that my focus for 2011.

Renew – Continue building on my recovery from The Great Burnout. What I’ve been doing with my running and much improved diet has slowly but surely helped me renew my strength and commitment and brought me to a much better place. But I have much more to work on. This is about practicing things that are good for me (diet, exercise, reflection, reducing stress as much as is realistic) so I can be the father, husband, and advocate I seek to be.

Simplify – My life is very cluttered and disorganized, but much of that is my responsibilty. Rather than try to organize the chaos, I’ve decided to try to simplify it first. Instead of attempting to keep up with the eleventy billion things on my to-do list, I’m going to work on choosing the most important handful of those and putting the rest out of sight somewhere. And I know I’ll have to be cutthroat about some things. For example, I like being on Facebook and Twitter and get a lot out of connecting with other people, but it does come at the expense of other things around here. I may skim over that longer list periodically to see if it’s time to take action on any of them, but my goal is to keep my focus on the essentials so I can actually make progress on them. This leads naturally into…

Finish – Like I said, I have eleventy billion things I keep wanting to do. Every year that list gets longer because every year I carry over eleventy billion minus maybe three things from the year before. It’d surprise me if I even get three important things done a year. I want to change that this year. Whichever of those goals I decide to focus on and put on my essentials list, I want to finish them. I’ve been wanting to do certain things for much of my life, but every year they get deferred and never done. Life happens and you don’t always get to do what you want, but a significant part of this is still my responsibility. I can finish some and finish major parts of others, but I haven’t. I both want to explore why I’ve done this in the past and take steps to turn these wishes and ideas into reality.

My first very concrete finishing goal is to run a marathon. It’s a great symbol for ‘finish’ because it has a very literal finish, 26.2 miles from the start at a very specific place and time. I decided to go bold and set a strong, positive tone for the year. I signed up for a local marathon at the end of March and am well into my training for it. I ran 12 miles yesterday and felt pretty good. I originally planned to just do a half-marathon in April and the full in November. It’s the ‘just’ that’s gotten me into trouble in the past. It’s often led to ‘maybe’ or ‘possibly’ and ‘it didn’t work out so perhaps next year’ and then not at all. I’ve dreamed of running a marathon for the last 15 years. This year I’m doing it. And it won’t be the only thing I finish this year.

So there it is.

How are you going to make 2011 great?

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