He Did It!

It has been a hectic month--mostly fun... maybe a little bittersweet as well. Tom is set for better and for.... adventure...

Yeah, that's what we'll call it.

Gotta admit after reading this post by Bill Peace I have my fears. We did the best we could to set him up to succeed as himself. He knows himself--strengths and needs. He self-advocates and understands that there might be processes for getting things done (he has been at his IEP meetings since 5th grade.) He has the benefits of technology at his disposal and there is a disability assistance office on his campus who may have some ideas for him in a pinch, but this is the big leagues....

Overall, I am optimistic. He is, for the most part, a secure and resilient individual. He is undeterred by other people's attitudes. And he's a good guy, he looks out for others.

I'm very proud of him.

And I miss the towheaded toddler with the blue football tucked under his arm who bowed deeply after banging away on his toy piano as if our family room were Carnegie Hall...

Goofy kid--it's been a pleasure!

(I tried to upload a video for this... it says it failed yet still appears to be loading??? We shall see!)

It Doesn't Go Away... But That is OK

I talk to a bunch of parents whose kids are diagnosed with NVLD (or NLD) and because my son is 18, and because he was diagnosed when he was young (which makes us experienced), and because he is pretty successful with his accommodations in place, there are a lot of parents who see him as "cured."

Well, he's not. (And he has given me permission to tell you so.)

We went to visit a college last week. Yes, this is late, but not as late as the visit we will make this week! (The decision must be made by May 1.) We were riding in the car and started talking about the Autobahn... and, thinking I was being cute I said, "Not to be confused with Audobon..."

"Audobon?" My son asked.

"Yeah, he was an artist in the 1800s. He painted birds."

There was a really long pause...

"I... don't understand," my son said.

"You don't understand paintings of birds?"

Then he got hysterical.

Yeah. He was imagining painting ON birds.

Too funny!

He can still be a bit literal (I say this knowing that that phrase will really bug him... one of the joys of motherhood!)

And organizational skills and processing time, and handing things in, and a few other things are still a big part of the way he is. The beauty is that he knows this and has a bunch of strategies that he knows how to use to help himself.

I expect he will have some struggles related to his diagnosis at some points in his life. I also expect that he will approach them with his trademark good humor and analytical processes. I expect he will take the things he knows and apply them to the things he needs... I expect he knows how to self-advocate and will ask for help sometimes. I expect some times he will muddle for a bit. And I expect he will figure out his own way in the world...

With his disability.

This phase of life is an adventure for everyone. He does have some different issues to contend with...

And he will be fine.

Picture from here.

This and That

Last week, Jennifer approached me to tell me things that Carly, a girl from her class, was doing after school, then she would take my face in her hands to say "And not me!"

Jenn was clearly feeling left out.

At first I would comment that Carly was just a busy girl... Then I asked if Carly was doing this with her family.... Finally Jenn made me understand that there was an afterschool club that she wanted to belong to.

So we asked and Jenn is now taking part....

Excellent bit of self-advocacy, wouldn't you say?

And now for some interesting links:

This post by Stephen Drake about Writers Logjam talks about an NVLD issue that my son runs into too... As do I sometimes.

Deborah at Pipecleaner Dreams talks about the heroes she has met while parenting her kids with disabilities.

And this letter from Deborah to professionals working with her kids should be read by every young professional.

I am really enjoying seeing the Think Beyond the Label ads around the net.

And in case you think people with disabilities are the only ones working to change the language and the message that the world hears about them, they're not!

Don't Dis Ability

Back a few years ago, B.B. (Before Blogging!), I was chatting with an acquaintance who was passionate about AIDS/HIV issues. She told me about this thing called blogging and that she was thinking about starting one. After our conversation I went home and set myself up to blog too.

I ran into this woman recently and asked her how her blog was going. She told me she had never actually started one.

Turned out that she had gone home after our conversation and talked the whole thing over with her husband (a web designer.) He had told her that she really needed a website before she started a blog, and before she could have a website she would need to be competent with HTML, and she would need a marketing plan and several other skills and THEN she could write a blog.

Her hubby had told her that YES, she was a pretty good writer, but writing is "just the tip of the iceberg."

She did try her hand at learning some of the HTML stuff, but found it complicated and uninteresting so she had stopped.

So, yesterday I wrote my 200th post and she didn't--despite the fact that I also only had the "splinter skill" of paragraph construction starting out. (No, I did NOT mention this to her!)

The difference is that I VALUED my splinter skill and looked for ways to turn it into something, rather than DEVALUING it because it didn't come in a package with every other skill known to humankind.

And the fact is I have learned several new computer skills from blogging... way more than I would have without it.

How many valuable and exciting things are nipped in the bud by this sort of de-valuing?

Lots. For everyone, I'm afraid. More, if for those with a disability.

When my son was younger there was someone in every team meeting I ever attended who wanted to exempt themselves from dealing with him, or deny him opportunities--in spite of his considerable language-based skills--because of the things he could not manage.

I spent years taking the skills the school labelled as "splinter skills" (and therefore meaningless) and re-framing them as "bridging skills."

I was constantly pointing out that things like language skills, which didn't interest his math teachers, could be used to improve his math skills...

The same with my daughter. She has great decoding skills and comprehension lags, so she isn't actually reading, according to some folks.

Yet, I find that when I am listening to her read and her understanding derails, if I hear her mention something like a character's purse, for example, I can draw a purse for her (adding a visual to her de-coding) and she will orient immediately to what she is reading. Her 'meaningless' splinter skills are the bridge to comprehension.

My friend's son loves to 'show off' according to his team. If his language skills were stronger they would call it 'performing.' My friend, on the other hand, works to use his love of an audience combined with his strong visual skills to insert story elements into his routines... thus turning his 'showing-off' into communication or story-telling.

Another friend, whose son is not diagnosed with a disability "has such great ideas, but he's so immature," according to his school. First of all, he is 17--of course he's immature! But wouldn't implementing one of his ideas be a great way to increase skills and maturity?

Reject the rejection! Embrace yours and your kids' skills--make bridges of those splinters--and see where they will take you!

Picture from here.