January 2010

The valley of the shadow…

by Tim on January 27, 2010

If you follow us on Twitter, you may have read that my grandmother’s health has taken a very bad turn. Her cancer returned with terrible force and swiftness, and now we are holding our vigil and trying to keep things together as best we can. I dread the phone ringing. I don’t think it will be long now.

I got the news about her health this past Thursday, and by the next day it had already gotten much worse. I had originally bought a last-minute plane ticket right after I first heard the news to fly up last Saturday, but her deteriorating condition was too much for me to wait that long. I couldn’t take the chance of waiting that extra day. I threw some luggage in the car, left Mary with the kids, and drove as fast as I could to get there. I arrived just as she was going to bed that night. I hadn’t seen her in about four months. I nearly fainted. I just wasn’t prepared to see her so frail.

As I should have realized, though, her body is frail, but her spirit is irrepressible. There she was telling jokes and picking on people and being the person I’ve always known even while she was in pain and struggling to do even the most basic things. It was a lesson in strength and dignity that I’ll never forget.

In celebration of her 90th birthday in 2008, I posted “What My Hero Taught Me About Parenting an Autistic Child”. A few people encouraged me to share it with her, but I never wrote here what happened after I did. The short version is that before she went into surgery earlier last year after her cancer first started, I had my sister give her a printed copy of it. She said she read it several times a day when she was in the hospital that first time, and most days since. There’s no way I can put into words – particularly without bawling my eyes out – what that means to me. And it was the last thing we talked about before I left to come back home Monday. In all likelihood, that post will be our final shared memory. I draw some measure of peace from knowing that she will go to her eternal rest knowing how much she has meant to me.

I will have much more to say about her and my visit up there in future posts. Right now, the emotions are too strong and raw for me to keep writing. More than anything, I just want her last days to be as comfortable as possible where she feels surrounded by our love.

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I Have a Dream for Autism

by Tim on January 18, 2010

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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by Mary on January 15, 2010

When I was pregnant with Dale Jr, I started forcing the J-man to walk up and down the stairs by himself. I just couldn’t carry him. It took us a LONG (echo long, long, long) time to get him to go up the stairs, and coming down the stairs was even worse. Finally though, he did it. He held our hand, and walked up or down the stairs.

After Dale Jr was born, there was a point where everyone was sick. Everyone. And so we carried the J-man up and down stairs because he was that sick. He was pitiful – when we were downstairs, he would just lie on the floor and look sad. He had no sense of balance at all. And so, of course, he started to depend on us to carry him again. And, like idiots (or, you know, people who just wanted to get through the day!) we did.

I decided this week that the J-man was going to start going up and down stairs by himself again. The reason? Our incredible babysitter (Ms. Cindy) was over, and the J-man wanted to show me something while I was upstairs working. So while Ms. Cindy was occupied feeding the always hungry Dale Jr, the J-man just walked up the stairs. By himself. We were all shocked. But I figured, hey, if he could do it when he wanted, then we were dealing with a behavioral issue, and not a sensory one.

So we started. And it was AWFUL. He shrieked and cried and twisted and refused. I tried using Veggie Sticks as a reward. He didn’t care. I tried putting Legos on the steps. He would come up a step, pick up the Lego, and then go back down the step. He did that all the way to the top… and then went back down the steps because, Silly Mama, Legos don’t belong on the steps! But he refused to come off the steps into the second floor hallway.

I ended up picking him up, putting him on the steps, then closing the baby gate, so the only way he could go was UP. Oh, he tried to slither under that gate. He tried going through the spindles at the bottom of the stairs. But the only way to move was UP. The first time, it took us over an hour to go up the stairs. I went to the top and folded a load of laundry. I read some blogs. I purposely DIDN’T listen to the screaming. And it was hard. For everyone in the house.

Going downstairs was even harder, because I worried that he would fall. So I sat him down and showed him how to bump down on his bottom. He didn’t like that. I was so frustrated that I grabbed his feet and pulled him down each stair on his bottom, one at a time. He was SO upset by this that he tried to scramble back up the stairs! Tim had to do a lot of rocking in the mancliner to soothe.

We went two days like that. Diapers went a little longer than they should, because it was just so much work to go up and down the stairs. And then Wednesday morning, I put him on the stairs, and he walked down them. He freaked out at the bottom, but he calmed down pretty quickly. Same with going up.

Thursday, he walked down the stairs calmly when I walked with him. He walked up the stairs calmly when I walked with him.

Today, I guess he decided that it was time for a diaper change. He walked to the steps, walked up them by himself, and shook the gate until I opened it. I opened it, and he walked to his room for me to change his diaper. Then he walked back down the stairs. And we celebrated.

I know, a lot of people think, STAIRS? Really, you’re celebrating stairs?

Yes. Yes, we are.

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MOAR PUFFS nom nom nom

by Mary on January 13, 2010

When we first heard about Signing Time [affiliate link], it was because I had read about teaching a baby to sign – that it reduced frustration for them to be able to communicate before they could speak. I ended up thinking that all of those children had to be BRILLIANT to be able to learn to sign, because even though the J-man loved watching Signing Time, he couldn’t (or wouldn’t) sign. He didn’t have the fine motor skills to pull off doing any sign that had finger movement or shaping.

The only sign the J-man ever used was “more” and I’m still not sure that he understood what he was asking for. The only time he ever used it was when we were playing a game where we carried him around and stopped suddenly, and he had to ask for “more” before we would move again. So he understood that we would start running again, but I think he just thought the sign meant something like “go.” Once the J-man was able to actually say the “g” sound (for GO!) he stopped with signing “more.”

In the span of something like 5 minutes, I just taught Dale Jr to sign “more.” He was sitting in his high chair eating (also something new this time around), and I asked if he wanted “more” or “all done” – signing each thing. (Our “all done” is like an umpire making the SAFE signal at home plate, because the other way to do “all done” looks too much like stimming for the J-man to ever differentiate.) Dale Jr would open his mouth like a baby bird in a nest, and I would pop in another Gerber Puff, each time signing “more!” before.

Suddenly, when I asked if he wanted “more” or “all done” he clapped his fists together. “MORE” I shouted, and gave him another puff. “More or all done?” Again, he clapped his fists together. “MORE!”

Then, before I could ask the question, Dale Jr looked at me pointedly, and clapped his fists together. “MORE!”

I called Tim downstairs to make sure I wasn’t reading more (heh) into the situation than it warranted, and Dale Jr showed Daddy that he could sign “more” with a bit of resignation – all, “I just want the dang Puff, people, so could you give it to me?”

And, we celebrated.

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Finally Picked My Three Words for 2010

by Tim on January 8, 2010

I think I’ve finally settled on my three words for 2010. Luckily, ‘timeliness’ isn’t one of them.

Proclaim – This is about committing to writing in many forms, whether that involves my writing projects, blogging, other social media, articles, writing letters to Congress, or anything else where I can speak what’s true to me and advocate about what’s important to me, particularly autism and children. And this is not just putting words on paper or screen; proclaiming is writing emphatically and ramming the exclamation point down into the table.

Connect – To personally connect with more parents, educators, therapists, specialists, technologists, and others who have similar experiences to mine and foster the relationships I’ve already made; to help people connect with each other so they can learn and get the information and support they need; and to connect people with quality online resources that help them become better parents, carers, educators, or therapists. This includes actually responding to my e-mail and our blog comments in anything resembling a timely fashion – which I’ve clearly and epically failed at for a long while now – as well as participating on others’ blogs.

Bamboo – This one requires a bit more explanation. Bamboo is – among other things – an important symbol in Zen Buddhism. It is very strong, flexible, supple, and resilient. It will bend under tremendous weight but not break and still be able to snap back to upright when the weight is gone. It responds exactly as it needs to under pressure, bending neither too much nor too little. It is the opposite of tension and rigidity. It has a profound ability to flex and adapt even to vast changes.

I wanted to find a simple word that for me captured the foundations for physical health, emotional health, and attitude. I think in order to be like bamboo you have to find ways to bring yourself more into balance, take care of yourself so your body can respond to things in the right way, practice a lifestyle that fosters calm, flexibility, and ease in the midst of great challenge and adversity, be open to opportunities and gifts that come from being a parent, and nurture a positive attitude about life.

Of course, if I manage even a fraction of any of that, I may try to cure cancer while I’m at it. :-) But by trying to be more like bamboo, I think I’ll be a better father, husband, and friend.

One of the activities that pondering bamboo has led me toward is something I discovered called a ‘gratitude journal’. I at first thought of it as incredibly cheesy, but after doing it for just a couple of days I felt a noticeable change in my perspective. Being the geek that I am, I do this on my iPod Touch using an app – not surprisingly – called Gratitude Journal. (Link opens the App Store in iTunes – it’s 99 cents) Just open an entry, type some things that happened that day that you’re grateful for (shows up basically as bullet points), and you’re done. If you feel like it, you can rate your day 1-5 stars and drop a photo into it, though neither are required. It takes maybe two minutes, but I’ve found it a great addition to my day.

Have you decided on your three words for 2010 yet? Would love to hear them if you want to share!

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Goodbye to the Aughties

January 4, 2010

Thank goodness. We can say goodbye to the Aughties. Except for me. I’m trying my best to say goodbye to the Oughties instead. Good riddance Oughties! You know – the Oughties. He ought to be able to do this by now. He ought to be speaking in sentences. He ought to be able to say […]

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