Outgrowing His Words

 Jim always tries to stay one step ahead of Charlie's growing feet by making sure we order the next size up in black nubuck Merrells. I ordered two such pairs in size 11 back in December and I know I'm going to feel that little twinge when I order sizes 11 1/2 and 12---Jim wears a size 11 but Charlie is going to grow out of his all too soon. Charlie's been taller than me for the past two years but Charlie being taller than Jim: We did figure it might, would, one day happen, but it's always a little different when the reality starts staring you in the face as you click the "size" box at Onlineshoes.com.

Since I started blogging regularly again in this space back in September, I realize that most of my posts have been about growing up. It's bittersweet for any parent. We have tons of photos of Charlie but it's only in the past few months that, in looking through them, I've felt, yes, that twinge in knowing that the days of outfitting Charlie in t-shirts with cute pumpkins are over.

(I know I could get him such a shirt, but I'm not so sure if such comes in men's size small.....and Charlie favors shirts in blue, black, and green over orange, red, etc..) (And if you cringe in looking at photos of your younger self in clothes your mother thought adorable but you thought something less, apologies!)

I also realize that I've been chronicling the parenting of a moderately-to-severely-autistic adolescent boy as an often harrowing experience. In looking over some of the things I've written (like this trip to the ER for an infected mouth sore or a really rough Sunday), I suspect that, were Charlie just diagnosed or 5 or even 7 or so years old, I'm not sure I would have wanted to read some of these posts, to know that adolescence can really be as hard it is; to know that, when your child is bigger than you, the days of swooping him (wailing and back-arching) up in your arms are very much over, and a parent must think of other ways to handle wailing and back-arching. The general hope would be that said wailing and back-arching would be over and done with for most children but this has yet to occur for Charlie. By this, I don't mean simply to suggest that he's locked into "behaviors" associated with children much younger than him. We know very well now that Charlie does such things to communicate. We also know how much he wants to communicate, such that he'll go to great lengths. Frankly, it means a great deal to us that Charlie has, and has always had, this steadfast urge to get his point across.

But while we can buy new shoes for his growing feet, providing him with more language that Charlie can call up when he needs: This is far harder than just clicking "buy now" on Onlineshoes.com. In the past couple of months, Charlie has been using no and yes to express a lot more than, well, no and yes---"maybe" or "I want that" or "give me a moment to think about it." As of Sunday, it's occurred to Jim and me that another phrase that's been doing overtime as far as Charlie saying it to mean a lot of different things is "I want to eat." Charlie said that in the car Sunday after our trip to the beach, before getting very upset. He then summarily turned down everything Jim and I offered to get him and only poked at things when we got home. 

Monday got off to a slow start (good thing Jim and I still have one more week off before we start teaching). The day unfolded peaceably from school to home and a chilly walk. Charlie did a particularly nice job writing the date and the word "Monday." He was eager to get in the car around 6.15pm for a ride, then, once hom, would not budge from the back seat. He told us "I want to eat" and we reeled off the list of contents of the refrigerator and cabinets, to many "no, no, no" 's. Eventually he came inside, said "no" to sushi and a steaming plate of rice, and told us "bedtime." And went up to bed, very peacefully.

Charlie's new habit is to have a mongo after-school "second lunch/early early dinner" snack; we feel pretty sure that he's just not always hungry as a result for the rest of the day. And we've started to think, when Charlie says "I want to eat," he sometimes really does, and, other times, he's trying to tell us that he wants something, something to satisfy him in a more figurative way, but he doesn't know how else to talk about it---maybe doesn't even know what else this would be. 

It's the sweet---sweetbitter?---side of seeing Charlie grow up, knowing that, even with all the challenges, he striving to tell us so much more than he presently has words for. 

I suspect that Charlie figuring out the words he needs is a lifelong project, like so much else of his learning.

---

The days of Early Intervention are far behind us. But, really, Charlie's still at the early stages of the journey, of his learning and education. These, we believe, will continue throughout his whole life.

And that's why I'm very uncertain about former Alaska governor Sarah Palin being an advocate for individuals with disabilities. 

What am I doing mentioning Palin on this blog that sticks pretty much to chronicling Charlie's life and ours? 

I've just started blogging over at Care2.com. I was planning on my inaugural post being about (surprise surprise) autism but current events took precedence, and so I wrote my first Care2.com post about Sarah Palin being hired by Fox News yesterday. I did a bit of blogging and commenting about Palin when she was Sen. John McCain's running mate in the 2008 Presidential campaign, when I was still writing AutismVox. Since ceasing to write for Change.org, I've been glad to return to a more personal sort of blogging and will continue posting daily here. But it looks like I'm getting on my soapbox (or rather, soapvox) again---something new in a new year. 

(Along with translating Seneca---very good thing I still have one week off before returning to my classroom.)

Comments

[Liz Ditz]

The older neurotypical boy, Drummer Man (now almost 32, sheesh!) at about age 12 would come home from school and likewise need "mongo after-school "second lunch/early early dinner" snack". I don't remember #2, Scholar Man, doing the same but he reports "being frantic with hunger" just before being picked up from school.

The third one, Jumper Girl(also neurotypical, with dyslexia) needed a pretty hearty snack in the car right after school too.

In (somewhat) related news, since JG is returning to college in 7 days, we're meeting with an assistive technology firm tomorrow to try out the Intel Reader. They will also have some other gizmos to try out, some for the iPhone she already has.

[Justthisguy]

Well, dang! I voted for Sarah and that old guy, whatshisname.

Actually I voted against Obama, just as I voted against Gore and Kerry.

The last President for whom I would have enthusiastically voted, instead of grudgingly settling for him as the lesser evil, would have been Grover Cleveland. Yah, I know, long-dead before I was born. Still, he was the last REAL Democrat President.

I, and every other person I know who voted the McCain-Palin ticket, spoke of "holding our noses" to avoid something which would be even worse.

I voted for W twice, but not because I wanted him for President. I voted for McCain-Palin, not because I wanted that Statist Institutionalized (USN and POW) guy for Prez, but because the idea of BHO in the Oval Office just made me shudder.

I was kinda hoping that the Naval Angriator would get elected and drop dead, and give us Sarah.

She seems not to suffer from the Gramscian Mental Damage, that is, her sentiments seem authentically American.

[emma]

Sarah Palin as advocate??

http://ca.news.yahoo.com/s/capress/091124/entertainment/palin_marg_delahunty

Don't know ho accurate this report is, but it doesn't sound good.......

[Jill]

My two sons, 21 and 19, wear size 14 and 12 shoes, respectively.
They're both well over six feet tall, taller than my husband who is six feet two inches.
My 14-year-old daughter is as tall as I am (five feet 10 inches) and I expect her to top out at six feet.
It's surprising sometimes to be surrounded by these long, lean kids whom I used to carry foot-ball style against my side, scooping them up one-handed.
If they chose to stage a coup they could easily overpower my husband and me but fortunately they're peaceful.
I witnessed how some of my former students could tear a room up when they became enraged. Putting them in a basket hold worked but it was exhausting to hold on to a thrashing, screaming fifteen-year-old boy for more than a few minutes. One of my classroom aides quit when she was seriously injured by a raging teenage boy.
Some of my students' parents had been hurt, too, with clumps of hair pulled out and bruises and welts from being punched. I felt sad when they'd go over the incident in an attempt to figure out what caused the kid to lose it and how they might prevent a repeat performance.
Has Charlie been exposed to sign language, PECS boards or other alternative forms of communication? If he could point to a picture of the thing he desire or sign what it was he really meant by "I want to eat," it would make all your lives easier.

[Leila]

When you show him the foods and he says "no", does he laugh or look upset? He could be taking some kind of pleasure on your response to his "I want to eat"... But of course it could be something else that he wants but is unable to express.

Congrats on the new blog! I can't stand Sarah Palin and I think she just lowers the standards on political discourse.

[Louise]

Beautiful post, Kristina. You have such a deep appreciation of language as being the primary and primal way that we human spirits communicate with each other. (Touch is used only in very limited circumstances, and telepathy .... well... not successful for everyone.)

Charlie does seem to have a longing for things - a longing that is like is like a hunger. Maybe that's why he says "I want to eat." He's using a metaphor, the only one he's got.

What does he respond when you ask him "What do you want"? Or has it always been taking him at his literal word, trying to find the food he craves?

When Jake was little - just mastering language - he spoke the same way. He got so frustrated when he couldn't make himself understood! He would have thrashing fits - yes, I would pick him up, his back arching, and put him in his crib, where he couldn't hurt himself. Frustration combined with tiredness resulted in tantrums in an 18 month old. Many times we have longed for a safe space , like a crib, to sequester a man-child who refuses to cooperate! But luckily we can use words now.

It does seem that Charlie is trying to find words to express emotional states. Nouns related to things and verbs related to doing are no longer sufficient for him. How does his school teach language and vocabulary to him?

[autismvox]

I have been sitting so long on the fence about ProLoquo2Go---time to jump!

"Frantic with hunger"---that really seems like Charlie when I pick him up after school, though he's had plenty of lunch.

When presented with the foods, he looks very serious in saying no. He's been presented with PECS, picture schedules, activity schedules, sentence strips......etc....... for years. Somehow those never seem to do the trick, or only work for him temporarily. He usually goes back to language and talking.

How he's been taught language and vocabulary at the current school is in many ways to similar to the ways he's been taught all along....I'll dig up some old posts about how he learned to talk.

[Maddy]

There just doesn't seem to be enough time for anything at the moment. Part of it for me is having a household of 8 to manage but I feel as if we're permanently stuck in fast forward.

I have big feet myself and Owen's are now the same size aged 10! We're so much further along than I ever imagined or hoped for but we still experience hours of silence [or rather no words rather than real silence] but all I do know is that they're all growing up far too fast for my liking.

[Theodosia]

Kristina, please don't stop sharing relevant details because you think they won't be pleasant to read. What happens (for me anyways), is that I read an entry of yours where you talk about an incident in very vague, general terms, and I find I'm lulled into thinking that a "neurological storm" as you often put it, is perhaps just a bit of shouting, or running in circles, or any number of things that are easily handled by staying calm and cool and loving. And then we have one here, and I'm taken aback at the severity of the behaviors I wasn't expecting, and I panic and don't know what to do to help. I start wondering if I did something wrong, or if I'm one of those horrible parents who has the wrong attitude because I'm getting so much more anxiety than you ever seem to write about.

Obviously I'm not asking that you violate Charlie's privacy, or your own. But just know that when you do give details, it doesn't necessarily scare people or make us feel like you think it's a nightmare or anything. It just gives a more realistic picture, which some of us who are more anxiety-prone can use to get a better idea about the many ways things can go, and to come to understand "Okay. Yes. I've thought about that situation now, and I'm sure we can handle it." Like my son, I guess, I just do better in a crisis when I have some information front-loaded. :)

[mumkeepingsane]

My boys are big, big boys and their feet also seem to grow at an amazing rate.

I wanted to let you know that I love reading about Charlie. I make notes and really try to digest what adolescence is like for Charlie. Obviously every child is different but, somehow, reading about Charlie makes me feel like someone is forging the path ahead of me. I'm not sure if any of that makes sense so I'll just close with Thank You for sharing what you do.

[autismvox]

@Theodosia and mumkeepingsane,

thank you thank you so much!

I guess I should watch out for too many euphemisms. "Neurological storms" are high, high intensity---textbook severe---full of anxiety for everyone, before, during and after. I'm trying to teach myself to stay calm during the whole thing as, at this point, it's become quite clear that the more emotion and anxiety and excitement and desperation we show, the worst the whole storm/meltdown/tantrum gets. Which is not to say I've been consistently successful at "keeping calm and carrying on"!

[Monica]

Having weathered many a "neurological storm" while growing up with my brother, Stephen (who is now 57 years old), I am fully cognizant of what you're referring to, euphemisms or not! Keep in there, continue your loving, patient intervention.