Friday, September 19, 2008

A rose by any other name

After a week of Crazy and Craptastic misadventures (seriously? rotten week…no spare time, no real progress, lots of drama, very glad it’s over…), we had Captain Adventure’s annual IEP meeting today. The big topic was around having him moved to a different school. It’s a longer (full school schedule) day at a school much further away (as in, almost twenty miles away!), but the program is much better suited for his needs.

The current program is a little more general, with a huge variety of kids with a huge variety of needs all in the same classrooms – everything from profound mental or physical disabilities to the absolute mildest of speech impediments, with one teacher for every four kids.

His teacher is an absolute peach, and has worked wonders with our little Captain – but he demands a lot more attention than she can possibly give. Not without neglecting her other charges, which surely isn’t fair to anybody.

The proposed program has one teacher for every two students, and is designed entirely around kids like Captain Adventure. We toured the school this morning, and I really liked it. It seemed as though every thing they showed me had me thinking, That is so perfect for Captain Adventure!

They “get” kids like him. They know how to handle his quirky behaviors, they know the best ways to get him to focus and do what he’s supposed to do. I was thrilled to see all the cool things they had in place to gently get their kids to move from teacher-makes-me to I-make-myself…exactly what he’ll need if he is ever going to mainstream…

Now, in some stubborn part of my mind I still don’t accept that my son is autistic. I still even hate saying the word. It’s incredibly hard for me to say it, to use Mr. Tongue and Mr. Lips together to say, “He’s autistic” when someone asks what’s wrong with him. (Believe me, they usually have good reason for asking…sigh…)

It clings to my tongue like a drunk hanging onto a barstool when asked to leave, and usually leaves my mouth with the same amount of grace as said drunk leaving the watering hole.

I stumble over it, every.single.time, and frequently erupt into this twenty minute spiel cataloging how PDD-NOS is not necessarily autism-autism blah blah blah…it’s horribly embarrassing and in the back of my mind I am usually screaming, “SHUT UP, TAMA! JUST…SHUT…UP!” and yet I can’t because I can’t just say he’s autistic and leave it at that because he is so much more than that!

A rose by any other name would smell as sweet…

Of course, by the same token, stinkweed still smells like stinkweed even if you call it star jasmine – so you can’t go around pretending one thing is another. It is what it is, and you’ve got to accept what it is and act accordingly.

Whether I like the word or not, whether he’s “high functioning” or “mildly” or whatever other rationalization and/or mitigation I can come up with autistic, Captain Adventure is autistic and needs a program that knows what to do with that specific disorder.

Right? Right!

So! Here we are! My husband and I, touring the autism program and talking about his progress (or lack thereof, depending on the category) and everybody is on the same page and having him transfer to this other school is all but a done deal in our minds. We’re excited! This is good! This is what we need! This puts new fire beneath our cauldron of hope! We’re all united behind what we need to do, parents and teachers and therapists and coordinators applauding the Great News that he can and should be transferred to this program which better suits his unique needs!

We talked for over an hour about how his autistic behaviors interacted with his therapy and how with his autism diagnosis it would probably be better for him to be in an autism program which is based on the most recent autism research and hey! Let’s see if we can say it ten times fast! AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM!!!!

And then suddenly, out of nowhere!, the meeting facilitator suddenly poised her pen over his IEP and asked, “So, you’re OK with me changing his qualifying need to autism, which would qualify him for the new school and program?”

{deer in headlights}

My head said, “Yes, of course. This is a needed step to open the door to Appropriate Program Changes.”

But some other part of me…somewhere right around my womb, I think…said…no.



You are not to put that down as my baby’s ‘qualifying need.’ No. That’s not OK. No. If you write it down…it will be…real.


Really official.

PDD-NOS lets you sidestep the a-word. It’s a definite maybe. It could be refuted later. “Yes, they thought he might be autistic, but obviously, heh heh, he wasn’t.”

But to say he qualified for special services because he is, undeniably, irrefutably, and all of us do herewith say aye to it, autistic

I had to say yes, and I did say yes. Yes. Please do change it, so that he can be transferred. That is the best thing to do.

But that ‘yes’ almost tore my tongue out, it held on so tight.

It hurt. Almost physically.

Just like adding a new label for this blog did.

Welcome to the 'autism' folder of the Den of Chaos blog.

Now if you'll excuse me, I think I need to go find a corner and have a good cry...


Marty52 said...

And yet... he is still your sweet Captain Adventure, no? That's the important thing to remember... and it's the reason you want the best for him. Hold on, Tama, and ride this out! What's the old cliche? -- what doesn't kill us makes us stronger? It's true, y'know, it's true.

Anonymous said...

Remember the commercial - "the heartbreak of psoriasis"? They never had to say yes, my child is autistic. Our grandson is autistic, and your post today brought back all the grief process I went through in accepting that diagnosis.

I think you've made a good choice. Hugs for you and The Captain.

Eileen said...

I remember the day we got the diagnosis for DS. I felt like the ceiling had come down on me. Congrats on finding a good program for the Captain. It took us years to find the right one for DS but he is thriving now. I hope the same happens for your little guy.

Hollis said...

On top of all that, i think that you, Tama, are a pedant like i am. And if he's been diagnosed as PDD-NOS (which, sure, is in the autism spectrum), then it's not technically autism, no matter how similar his behavior may seem to the unwashed masses.

So, even if it means getting him into the School Where Angels Sing and Harps Play, i totally understand not wanting to admit it.

(I have a similar story about a guy i know who refuses to be identified as "gay", despite having only dated men for the past five or so years, because he a) has dated and still considers dating women and 2) hates to be labeled and won't even consider being called "bi". So whenever he comes up in conversation, i have to give a 30 minute presentation on his romantic history to people who will likely never meet him instead of just saying he's gay and moving on with the conversation. Sigh. Ever the slave to semantics am i.)

Bullwinkle said...

So: is it weirder to leave a hug in your comments from an anonymous stranger or a mostly lurker?

here's a (hug) anyway.

Anonymous said...

I'm sorry, I know it was hard. I think you've found 'darkest before the dawn.' I am looking forward to reading about you breathing better and how much Captain Adventure loves his new school.

Kali said...

No one will ever know Captain Adventure the way you do. They will all have their own version of who Captain Adventure *is*, and he is a WHO, not a WHAT. IEP's are a 'what' and autism is a 'what'-- it is the 'what' things we use to determine action. The labels can make us cringe.

Congratulations for navigating this minefield for Captain Adventure. It was definitely an act of bravery on your part. Captain Adventure is blessed with you for his mom.

Anonymous said...

He is not "autism", he is a little boy with a condition we call autism. And the more help he gets now, the better off he will be as an adult. My little boy is 28 now, he has aspergers, and was never given the right diagnosis or the right help, and is struggling hard to have a productive life now.
Love, Connie

mama edge said...

What a wonderful introduction to your blog, reading today's post! Found you by searching for moms like me who have to use the "a-word" on a regular basis.

I promise you, it gets easier to live, and even thrive, with the a-word label. My sons both are on the autism spectrum. We embrace the label: Yes, they struggle because their brains work differently, and knowing it's part of autism helps us figure out how to make the struggle more manageable. But they also do some amazing things because their brains work differently, and different is not always a bad thing!

I will be stopping by here to see how the new school goes. Stop by my blog sometime if you're curious about what it's like when autism meets puberty.

Anonymous said...

Apergian adult here...

I know it sucks and it hurts. But you did the right thing. I was an adult (more or less) when I was diagnosed, and when I see the support and help that ASD (Autistic Spectrum Disorder) kids now, I have so much more hope for kids in the position I was in. My parents were like you, they didn't know for sure what up, but they got what help there was back then. (Asperger's wasn't commonly diagnosed 30+ years ago in the US, and if it was, there weren't a lot of treatment options either. Most of us weren't Autistic enough to qualify for help, so we were thrown in the deep end, to sink or swim, or flounder in pathetic little circles at the end of the dock and try not to drown.)

Louiz said...

*hugs* I hope it all goes completely fantastically well.

Kate said...

There's a book I like where one of the characters tells another that "I am not a story called (character's name) you are telling." Meaning, you may know some things about me, but not the whole me. I love that, and I think it applies to alot of people.

Quilty bird said...

I work in a public school in the "severe special needs" program. We are in a nice neighborhood in a well-funded district.

That said, we have 2 kids with autism and another (who's in kindergarten) with a might-be-autism diagnosis.

While we love and care for these kids the best we can, the ugly truth is that most of the aids (who work directly with the kids) have no special training for this. We get recommendations from specialists that we follow the best we can, but at the end of the day, we are mostly moms who decided it would be nice to work at our local school.

Yes, the "teacher" has special training, but we also have 12 kids in severe program. Sadly, the teacher, who has the most training, spends a good part of her time preparing IEPs, going to meetings, and doing other paperwork. Her hands-on time is limited.

So, having said all that, the right thing to do (according to me, who you don't know) is to go where the experts are. You made the right decision, even if it was a hard one.

The End.

Anonymous said...

Bless you, it's hard to be a mommy, isn't it? Even when we "know" they aren't perfect, they are, because they're ours and we love them. You're doing great, and so is the Captain. Give each other some huggin's from me!

Anonymous said...

I DO understand the problem with
"labels". I DO understand the difficulty of accepting that a child has a named condition. I DO understand the trials of having said child do inappropriate things in public. And I DO know the heartache of having a child whose needs are not met because the "label" is all that some folks can see.

However, labels can be useful in getting said child into the right programs for his needs. Doing that without losing sight of the OTHER needs he may have is a major undertaking.

It doesn't matter whether the label is "autistic" "blind" "diabetic" "crippled" or something else. It is our job as parents to see that the child doesn't see him/herself being defined by the label.
Easier said than done, but I have faith in you.

She Knits Socks said...

As parents, we do the best we can for our children. Making the decision was the hard part. Now we will be watching with you for the Captain's progress. Hugs for your whole family.

Kate (Kiss My Frog) said...

When my son was diagnosed with Asperger's, and I was flailing around in much the same way you are, one of the teachers at his school gave me some brilliant advice: "If it was asthma or diabetes you wouldn't beat yourself up like this. You'd get him a good specialist, you'd work out a treatment plan, and you'd deal with it. That's what you need to do here and now." She was exactly right - I had risen to every other challenge up to that point, why was this one any different?
In the three years since, I've discovered that Asperger's is just one of the things that make my boy who he is, same as the brown hair, and cinnamon-coloured eyes. Sure, the Asperger's is more challenging than hair colour, but he wouldn't be Zac without it.

Yarnhog said...

Go ahead and cry. And then keep right on doing what you've been doing all along, which is hitching up those big girl panties and doing what's best for your wonderful kid.

Celestial said...


Passes over a big box of Puffs Plus with lotion.

Keep going, one foot in front of the other.

Iron Needles said...

What is it about the actual words that makes it more real? I don't know either, but it sure does, and sometimes it sucks.

Anonymous said...

My oldest child, now 16, is autistic, too. You'd be amazed at the progress they can make. He was first diagnosed as "severely autistic," which was WRONG, the doctor spent 15 minutes with him, then as "high-functioning," and now, they're starting to say, "Asperger's." He's come a very long way. Hopefully, Captain Adventure will, too. Hang in there. Things do get easier.

Science PhD Mom said...

It's just a word...and yes, words hurt. They can hurt a lot. But at the other end of it, you have this awesome program tailor-made for Captain Adventure, and they are waiting for him with open arms and big hearts, ready to get him what he needs so that when he's an adult, he can scoff about it with his college friends. And THAT is worth a little word pain, isn't it? {{{HUGS!}}} Hang in there, you are doing great.