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Talking

Leap Days and Our Children’s Unchartable Development

by Tim on March 14, 2010

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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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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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.

[click to continue…]

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What’s So Different About Me?

by Tim on 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 at the beach that we couldn’t make him leave yet. That was more important than our uneasy second thoughts, which of course are more about us than him.

He comes home tomorrow, and it has felt like missing part of my arm for most of the week. It has been good for us to have a little vacation (or stay-cation where we really played catch up on work and the house for most of the week), but God do I miss him.

It was something to see him lead everybody he could to the back door of the apartment where we were staying in hopes of finding anyone who would take him down to the beach – regardless of the time of day or night. It was really sweet when we got there that he led me down to the beach, just the two of us, like he wanted to show me this amazing thing he’d discovered. I swear it even sounded like he was singing to himself while we were walking down the beach access ramp.

We watched him walk up and down the beach with Mary’s mom, stick his legs a little bit in the surf, and get some sand on himself. They drew literal lines in the sand to visually show him where he couldn’t go past on the beach, and for the most part, he followed those boundaries. (Good thinking on their part – visual cues!) Admittedly he was very little the last time we went to the ocean, but he was so much different this time. Clearly he loves the beach and the water. It was like watching a different kid.

There was only one problem. Most of this happened while I wasn’t around. Whenever he saw me, he ran up to me, held his arms up insistently and sometimes a bit frantically, and wanted me to hold him, to the point of just about having to carry him everywhere. Yeah, I’m a softy toward him a lot of times, but there was something else going on here that I’ve yet to figure out.

I’m a believer that in kids who are minimally or non-verbal, behavior itself is communication, and one of the most essential forms of it they have to draw on. He was trying to tell me something, seemingly very important, and I wasn’t (and still am not) sure what it was. Every time I was in the room, he was like this.

Was it his reaction to being apart from us? Perhaps. Was it more than that? Maybe, and I think likely. Was he in some sort of distress? I don’t think so since he was otherwise having a very good time. This has been really bothering me this week. What all is he trying to communicate to me? And why me specifically?

We wanted to take him to the North Carolina Aquarium while we were there, which is about 5 minutes from where we were staying. I thought he might enjoy the fish and the ocean colors and all the water, but all he wanted to do was cling to my neck. If I tried to put him down, he either did these odd movements around me and refused to hold my hand or just turned around and tried to climb back up me. I’m not even sure he registered any of the fish and ocean exhibits. I felt really depressed by the whole adventure, of course because I wanted it to go a certain way and it didn’t (again, my emotional baggage and not his). I felt like the guy who’s clueless and doesn’t get the obvious message blaring right in front of him.

We also tried going out to eat with the family, and he refused to be anywhere other than on my lap. He was pretty miserable the whole time. He had gotten up really early that morning and was very tired, but it was still uncharacteristic of him.

I know he missed (and still misses) us, and we certainly miss him. I just feel like there was something more going on. Around others, he’d do his thing on the beach, walk up and down it and play some in the water, play out in the backyard of the place we stayed, let others read him stories, and generally be himself in the ways I’m used to seeing him when he’s in one of his more calm and sensory-balanced states. As soon as I came into view, though, everything about him would change.

If all behavior is communication, what’s he really trying to tell me? I’ve been carrying this question around all week, and I don’t feel any closer to an answer.

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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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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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