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Speech

Big B, Little B, What Begins with B?

by Tim on March 2, 2010

Dr. Seuss’s Birthday! B, B, B!

We’d be seriously remiss if we didn’t mention that today is the birthday of the great Dr. Seuss. We feel forever in his debt because books like the ABC book, There’s a Wocket in My Pocket, Mr. Brown Can Moo, Can You? were some of the most essential pieces of the J-Man’s early learning. We found them indispensable in motivating him in his speech and reading work. Many of his early sounds and very likely much of his early reading skills and knowledge of the alphabet came from these Seuss books.

I have the ABC book memorized still. I spent many a day calming him down by reciting it and little by little letting him try to fill in a sound or word whenever I paused. After a long while, we could do the whole thing together. He’d say the next syllable, and then I’d say it, all the way through. We could do this without the book, both of us repeating it from memory like a liturgy. Really, that’s pretty much what it was for us.

So, Theodor Geisel, we thank you and honor you for everything you mean to our family and millions of others around the world.

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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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The Sign for Brother

by Mary on October 29, 2009

As you may be aware, the J-man is in love with Rachel Coleman from Signing Time. In Love. We watch at least 5 DVDs per week, and depending on our ability to walk around/interact, maybe more. (Tim has been having serious back problems lately, and has actually had trouble walking.) The J-man does not actually sign, but he likes when we sign to him, and recognizes the signs. If we sign while Rachel is on, BONUS!

One day early this week, we were watching the show about the alphabet, and I was signing along with one hand, and the J-man came over to me and moved my other hand until I started signing with it as well. (This is harder than you would think!) After we had gone through the whole DVD, we started playing what I call the “Yes/No Game.” It’s surprisingly easy… the J-man comes up to me and says “yyyy” and I know he wants to play, so I say “Yes, yes, yes!” while nodding my head, and signing. Then he says “no, no, no” – and I say “No, No, No” while shaking my head, and signing. It works on taking turns, and the J-man thinks it’s hilarious. We go back and forth until I am slightly dizzy from shaking my head, and then I stop.

So yesterday, I was sitting in the man-cliner holding Dale Jr, and the J-man decided we should play the Yes/No Game. I was trying to sign while holding Dale Jr, and managed to get both hands going, when the J-man decided that not only should Mama sign, Dale Jr should sign too! He came over to us, and tried to position Dale Jr’s hands into the “no” sign each time we said “No” in our little game. Since Dale Jr absolutely adores the J-man, he laughed and laughed with each turn.

We’re probably far away from the actual ASL sign for “brother” but I think we have a good sign that “brother” is an awesome thing to be in the Flashlight family.

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In Dreams Awake

by Tim on October 4, 2009

“Our truest life is when we are in dreams awake.” – Henry David Thoreau

“The dream was always running ahead of me. To catch up, to live for a moment in unison with it, that was the miracle.” – Anaïs Nin

Today, a dream of mine became real. You know, those wonderful dreams you have deep in the night when you see your child doing something extraordinary – something that normally, in the light of the day-to-day challenges, you aren’t sure you could dare to dream possible.

But first, let me take you on a little journey.

Every new word has so far been a four-year-long struggle for our J-Man. Much of that time has involved us interpreting the pitch, cadence, and general patterns of his audible communication from moans to sing-songy vocalizations. We’d always talk to him, though, as if we were all having a ‘normal’ conversation together. I admit, I grew very accustomed to having whole conversations where I supplied both our speaking parts, like a one-person play.

Then came single syllables, which much later become first syllables of more complex words. Then in a few more months, like people reading wedding vows but repeating them one syllable at a time, we began to construct complete words, then very short sentences. We’ve now gotten through entire children’s books that way, slowly but surely, one syllable at a time.

Until pretty recently, most of his talking – in whatever form – has been in some way prompted by us, whether ‘asking’ him something or just getting him to repeat something back to us. Getting to “I want” was a huge triumph. For a long time, we had to say “I want” for him, and then he would tell us what he wanted. Then he started doing it himself, and one syllable at a time, we began to better understand his wants and needs.

It often goes:

J-Man: “I”
Person he’s talking to: “I”
J: “wuhn”
Person: “want”
J: [says what he wants, like his word approximation for 'apple' (for applesauce), 'sss-ts' (socks, when he wants to go somewhere), etc.]

Recently, the meaning of “I want” has expanded into including something like “I want to show you this”, and he tells us what that is after “I want”. It even has taken on connotations lately of “I need help with”, though we’re working hard on adding “I need help” to his vocabulary, with some success I might add!

But one thing you may have already noticed in all this is that most all of the things he’s (verbally) wanted for most of his four years are things, objects. What has completely lit our hearts up in recent days is that he’s now beginning to tell us he wants something else – us.

He crawled in behind Mary on the couch, and we did one syllable at a time, “I – want – Mama.” Let that sink in a moment.

Maybe the vast majority of the parents on the planet with young kids had this happen to them lately, if not today. How many times have you heard a child shouting “I want my Mommy!” to the rolled eyes and exasperated responses of those looking on? How many times a day do these words go unnoticed really by anyone, except to think of them as some sort of tantrum?

How many times have those of you with non-verbal or minimally-verbal children thought something like, “I would give up everything I own – even a few body parts if need be – if my child could say that to me, just once?” I have, plenty of times.

Tonight the J-Man was very tired at bedtime. We had clipped his fingernails right before his bath, which always sends him into a sensory tailspin. We got through the bedtime routine pretty well and turned out the light. I put him in his bed, said all the things I usually say to him, and then began to walk toward the bedroom door. He began to sob and cry out pitifully.

“You’re OK, buddy. You’re OK.” I said reassuringly. “Everything will be OK.”

“I-I,” he replied in his tearful voice.

“I,” repeating that syllable as we always do.

“wuhn.”

“want.”

“Dee-dee.”

Daddy.

After a stunned moment – or many moments, I don’t know – I walked over to his crib. He became quiet, stood up in his bed slowly and peacefully, and held his arms up to me, which I took in mine. We stood there in his bedroom swaying back and forth, with his head on my shoulder. I could feel his body sink and relax.

We swayed there in the almost-dark, his room illumined only by a small nightlight shining on the far wall. But it was enough light for me to see all the perfection and beauty of this moment, this wonderful and real moment that could now take the place of my dream.

After a timeless while, I asked him, “Do you want to get in your bed now?” He looked up and kissed me, a long-time part of his J-Man sign language for ‘yes’.

So, I helped him into his crib, told him good night, and slowly walked out of his room with tears still in my eyes, the kind of tears many of you know too. They are the ones that renew us in the present and water the seeds of wonders and dreams that are yet to come true.

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All the Good Things

by Tim on October 2, 2009

My health has just been for crap lately, so crawling out from under my self-pity and general groaning – which I’m not good at in general – has required some serious conscious effort on my part.

Thankfully, the J-Man has his ways of snapping me out of it with yet more astonishing new things he’s achieved lately. His last two weeks at school this quarter – which ended a week ago – were like a quantum leap forward for him. His progress at school has been extraordinary, and it seems like every day at home yet another new beam of light comes shining out from him.

As I noted one of today’s great achievements, I got to thinking about all his recent accomplishments and newly-developed skills. I decided to start trying to write them down so I could both celebrate them and snap myself out of my self-indulgent funk. So, here are a handful.

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Simple Gifts

by Tim on August 31, 2009

This has been an eventful week here in the Flashlight House to say the least. Late last week we celebrated the anniversary of Mary’s 29th birthday! And tomorrow the J-Man turns 4. I can’t believe it; time goes by so fast.

We don’t do much in the way of birthday presents or parties around here really. We’re a pretty low-key bunch. About all Mary and I do for each other is the one not having the birthday goes and picks up takeout, we try to spend some unhurried time together, and we each get some additional me time that typically involves one of us getting a couple of hours out of the house sometime around our actual birthday.

The J-Man seems like he really couldn’t care less about birthdays. Actually, birthday parties routinely upset him. We’ve gone to his friends’ parties, and – understatement warning – rarely does he enjoy himself much. Strange places, crowds, noise, lots of running kids, etc. just don’t do for him, which I can understand. We go because we feel like he needs some practice at social events, but we know when he’s had enough and adjust accordingly. I can’t remember any of his birthday parties where he didn’t just burrow into somebody’s shoulder most of the time.

The concept of presents to unwrap doesn’t seem to click with him either. His general lack of attachment to things doesn’t lend itself to being excited about gifts on his birthday, Christmas, or whenever. And in what seems endemic to autistic kids, he absolutely hates the Happy Birthday song. He covers his ears and retreats into himself. Somebody really needs to do a research study on this phenomenon.

So, we decided to forgo a birthday party for him this year and celebrate it more in his style rather than in the way I think people (and for a long time us, too) expect it should be. We bought him a new swing for the swing set outside, one with a high back and built almost like a small, plastic recliner. He can’t use kid swings because when he gets excited and stims out, he lets go of the swing and flies off. (Thank God for mulch…) Obviously he’s too big for a toddler bucket swing. This new one is rated up to at least 100 lbs and has a five-point harness.

The weather is supposed to be absolutely beautiful tomorrow afternoon when he gets home from school. (70s in early September?!) What will be our birthday party then? Swinging outside – just us and my dad. Simple gifts. But the kind he loves most of all.

These past few days have gone like that too – one small but unspeakably wonderful gift after another shining through even in the midst of the craziness of everyday life.

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What’s So Different About Me?

July 25, 2009

Slight change of plans this week as we went to meet the J-Man and Mary’s family at the beach a day earlier than planned. We stayed a couple of days and then came back home – and we let the J-Man stay there for the rest of the week. He was having so much fun [...]

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Shining More and More! Quarterly IEP Report

March 31, 2009

In our last IEP goals recap from last quarter, the J-Man had a great nine weeks overall and showed great gains. This past quarter just ended last Thursday, and our little superstar continues to make great strides toward what we thought were some pretty ambitious goals for this year.
As a refresher for those curious about [...]

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