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Child development books typically portray your child’s growth as a gradually, but steadily, up-sloping line described in neatly organized groups of milestones and checkboxes. Days like yesterday promote the idea that a book about autistic child development would be rather like taking a bucket full of checkboxes, strapping that bucket to a roller coaster, and then hitting the big red Launch button. Needless to say, with the J-Man we threw that book out long ago. It was too stressful, constraining, and not helpful anyway. (One funny sidenote – he actually likes to sit on the couch and thumb through the Your Child’s First Year development book. We’re still not sure what he gets out of that.)

We can spend weeks at a time struggling to get over what seems like the smallest hurdle, though we all know there is no such thing as that in our worlds. The last couple of weeks in many areas it feels like we’ve gone backwards. Then you have days like yesterday where things come seemingly out of nowhere, and you have no idea how they suddenly sprang up. Sometimes we refer to these as ‘quantum leap days’, or ‘leap days’ to keep it simple.

So yesterday the J-Man:

  • Fed the baby!!! With a real spoon! With real food on it! And with a great deal of care! We helped him scoop the baby food on to the spoon, and then he did the rest himself moving it carefully to Dale Jr’s mouth, which he accepted with open mouth and unblinking eye. Mary and I almost both fainted.
  • While we were outside swinging (beautiful day yesterday too!), I asked him whether he wanted to go inside now or do more swinging. He replied without hesitating using our syllable-at-a-time verbal exchange method that we’re trying to invent a term for, “I want swing.” (his verbal approximation is close to “ssss-wuh-eee”) Wow!
  • On top of that, he actually walked to the swing by himself. It did take some coaxing and he wasn’t super happy about it, but he did it. Normally we have to carry him out into the backyard or he has a meltdown on the back porch rather than walk out into the yard without being carried. Again, he wasn’t pleased but he did it!
  • While sitting at the dining table, he said (again using our syllable exchanging) “May I be excused?” No kidding. He learned this from a Signing Time video and The Blessed Lady Rachel Coleman long ago, but he said it this time actually at the table in a contextually appropriate way. Woot!
  • He went to the kitchen sink and reached for the faucet, which I’ve never seen him do. He said, again a syllable at a time, “I want wash.” Wash hands! After getting over my surprise, I told him we needed to wash hands in the bathroom, which wasn’t what he had in mind at first but then was fine with it. He did want to hang out and play in the water, so we ended up washing hands twice but stopped it there. Still not sure why he asked – his hands weren’t really dirty – but hey, we’ll take it!
  • He was very cuddly with Dale Jr. in a way that’s showing he’s relating to him more as a person and brother now. He’s been doing this more and more in recent days, but he was very sweet with him in particular yesterday. The J-Man kinda burrows up next to him. I know this is in no small way a sensory-seeking thing, but you can see more and more how he enjoys the baby’s company. And of course, Dale Jr worships the ground he walks on already.
  • All about the ‘family pile’ -The J-Man wanted us all to ‘do pillows’ yesterday morning, which usually involves just one of us resting in the floor on a pillow – or a pile of them – with him. When he indicates he wants this, he’s asking for a sensory break and for help regrouping. This time he started pulling us all into the floor with him, baby included. One could say he was arranging us as his sensory aids, but we could tell this was more an intentional, affectionate act. He didn’t seem particularly out-of-sorts sensory-wise; he just wanted to be close to us.

What was particularly awesome is that these involve two areas he really struggles with: communication and interpersonal relationships. That makes these achievements all the more sweet.

After hundreds of iterations of practice to help him acquire a new, simple skill, sometimes he comes out of nowhere with something that you don’t even remember practicing. Then there are others you know he’s at least seen or heard before if not drilled repeatedly on it, but no matter how much you’ve tried to coax it out of him he may not respond until one day he just up and does it on his own with no prompting at all. There are others still that have involved epic meltdowns on every attempt until one day it seems like a switch got flipped. This is both the mystery and frustration of autism, but to me it’s also one of its greatest wonders.

There are plenty of days – perhaps most of them – where waking up and having no idea what might happen is a scary prospect. Sometimes what we fear comes true, and sometimes we get something different entirely. And then there are days like yesterday with plenty of the challenging autism things still happening, like trying to shepherd his easily overloaded sensory system through the day, but in between all that we discover little furrows where seeds landed unnoticed, scattered there by some unknowable wind or force, which grew hidden for a long time and then suddenly burst forth.

We’ve made it to the season of light and growth and bloom, and finally we have some warmth after a long, cold winter. That doesn’t guarantee anything, except that today, anything could happen.

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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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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 how we do things around here, the quarterly evaluations are done based on how well the kids are progressing toward meeting their IEP goals for the entire year, and then they’re assigned an evaluation code based on the following scale:

1 – Insufficient progress to meet IEP goal by end of year; below expected mastery of goal at this point in the year
2- Skills are emerging; mastery of goal is still inconsistent; student needs support to meet goals
3 – Consistent progress toward goals; on track to meet annual goal
3* – Consistent progress toward goals + some evidence of application and independence (Not sure why they need another 3 score here, but whatever. “Application and independence” are definitely two words we like.)
4 – Annual goal has been mastered; able to generalize the skill independently in multiple settings.

As I mentioned last time, don’t ask me why they felt the need to add a 3* in between 3 and 4 rather than just fix the scale to begin with. But anyway…

We rounded the halfway mark of this year early in March, so in light of that, his progress toward goals he has a few more months to meet is awesome.

Here are those categories and all the great stuff he’s been up to lately.

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Bubbles and Babies

March 21, 2009

For the past few nights, the J-man has been playing with a bottle in the bathtub. We keep one there so I can semi-easily fill it and rinse his hair. He has figured out that if he holds the empty bottle under the water, it makes bubbles. He LOVES the bubbles. On Tuesday night we [...]

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The Perfect Toy?

March 8, 2009

It’s been a long few days of continued sicknesses and traveling out of town – which by the way went pretty well by our travel standards – so we’ve been slow to report much in the way of what’s up around here lately. (Pretty much just sickness, pregnancy, school, and work if you’re really dying [...]

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