October 2009

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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A Blessing for the Day

by Tim on October 26, 2009

I heard this in an audiobook I was listening to while waiting to pick up the J-Man from school. An elementary school parking lot is not the most ideal place to get emotional, but I doubt anyone noticed, and who cares anyway.

It feels like it was written for parents like us. It’s beautiful, and it speaks volumes to me right now. Maybe it will do the same for you.

Hold on to what is good, even if it’s a handful of dirt.

Hold on to what you believe, even if it’s a tree which stands by itself.

Hold on to what you must do, even if it’s a long way from here.

Hold on to life, even when it’s easier letting go.

Hold on to my hand, even when I have gone away from you.

~ A Pueblo Blessing

 

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Not Dead Yet

by Tim on October 24, 2009

I know it’s been a long while since we posted something. For the most part, family life itself has been no more crazy than it usually is, but there are some areas in our lives that we know we need to make some changes in. The effort this is taking – and will continue to take for a while – has been exhausting. I think all this will result in our lives being much more like we want them to, but right now we’re just spent.

Sorry if this is a bit vague and cryptic. Nothing bad is happening, so don’t worry. It’s more that we’re making some significant lifestyle changes that will hopefully allow us to focus more on the kids, projects that are important to us, and autism advocacy both for the J-Man and for kids and parents everywhere.

I’m feeling very positive about what I think is going to come out of all this, and see this time more as growing pains than anything else. While the specifics of some of what we’re envisioning are still percolating, my excitement about it is keeping me moving forward through all the transitional stress.

We thank everyone for all of your thoughtful comments lately. We’ve been reading and enjoying them, though obviously we’ve been slack about responding. We appreciate each and every one of you and the comments you write! And we hope to catch up soon!

We should (hopefully) be resuming what passes for our normal programming in the very near future. Thanks!

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This is simply awesome. Kyle Forbes, you rock!

If video player messes up, look for “Autistic Cub Scout Saves Teacher’s Life”.

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[coupon codes at the end of the post!]

If you read any of the “Who was born or what happened on my birthday?” sites, you may have noticed that October 9th may be one of the most boring dates there is. I really tried hard as a kid to find something worth getting excited about that happened on my birthday. You know, besides me being born.

Admittedly, John Lennon’s birthday was October 9th. OK, that works. But it’s some serious kind of steep drop-off to the next tier, which includes Scott Bakula and Zachery Ty Bryan (one of the kids on Home Improvement, don’t ask me which). No offense to either of them or any other October 9ers, but we don’t seem to be a noteworthy bunch. Apparently Cervantes (Don Quixote) was also born on my birthday, which I’ll admit isn’t bad. Then there’s Trent Lott, which is just plain wrong.

To take the “This Day in History” route, October 9 was one of the most boring days in history too apparently. Phantom of the Opera opening in London on this day is fairly OK. But then you get stuff like “Isaac Singer patented the sewing machine motor” and “Joshua C. Stoddard received a patent for his calliope.” Yay! The Calliope! And supposedly Leif Ericson discovered ‘Vinland’ (and lobsters and chowder I guess too) on this day around 1000, but I question how they even know that since they don’t even seem to know what Vinland is.

But then I recently discovered something that made me smile. As I’ve said before, there are a very few women in the J-Man’s pantheon of goddesses. In that tier right below Mary, there’s Laurie Berkner, his Pre-K teacher Mrs. Jennifer, and someone who I learned I happen to share a birthday with – our Blessed Lady of Signing Time, Rachel Coleman! Finally someone cool to share a birthday with!

Rachel has commented here a couple of times and I talked to her a bit by e-mail several months back. She has not only been an important of his life and our family’s life since he was a baby, she showed him extraordinary generosity by sending him an amazing package of gifts. And the work she and the rest of the Signing Time gang do for children of every ability is worthy of all the praise they get. She has set the October 9th standard very high, so the rest of us have some work to do. We’ll give John Lennon a pass, though.

In honor of our momentous day, I got some coupon codes from them via the Happy Birthday Rachel Celebration e-mail if you are looking to get some Signing Time DVDs. (OK, so the coupon code has nothing to do with my birthday.) It’s 35% off a single DVD for October 9 only (Promo Code – RACHEL35). There’s also a 10% off deal going on if you buy 3 or more DVDs until the end of the month (Promo Code – BUNDLE10).

The mathematically astute among you can take the fact that I am exactly one year older than Rachel and the number on the coupon code and deduce how old we both are. That’s as much as I’m telling, though the same astute people will also figure out that I’ll now be a ‘perfect square’, which seems only fitting…

[Disclaimer - Yes, those links above are affiliate links. Any proceeds that come in to us from them will go to an autism-related charity. We are huge fans of Signing Time and cannot recommend them enough. If you go straight to SigningTime.com and skip our links, that's great too. They deserve your business regardless of how you get there.]

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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

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 […]

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