Tuesday, May 27, 2008

PDD-NOS

We had the Big Assessment this morning. I was worried for a variety of reasons, most of them revolving around Captain Adventure’s mood.

It was a long drive to the doctor’s office - two hours! strike one!

We had to get up half an hour before his usual time (already half an hour before his ‘natural’ waking time) to make the drive. strike two!

The doctor’s office, although pleasant and very much like a friend or grandmother’s house in appearance, was not the kind of adventure he talked about all the way up. strike three!

Fortunately, he decided that he would go ahead and play with the toys and discuss things with us and otherwise play along with our crazy ideas.

Those “in the know” are already making wise noises and nodding; those in the know who know Captain Adventure are probably saying, “I TOLD YOU SO!”

For the rest of us, PDD-NOS stands for ‘pervasive development disorder, not otherwise specified’.

This is PhD-speak for, “While he doesn’t have clear-cut autism or clear-cut autism spectrum disorder (Asperger’s syndrome etc.), something is up so let’s keep an eye on it.”

He did things today that he was not doing eight months ago. Little things, like holding up toys to show us, saying things like, “It a guy! Wif backpack!” – if your kid is typically developing you don’t think of that as being in any way Significant, but it is a somewhat Big Deal for autistic kids. They don’t interact in the first place, and they certainly don’t share that they’re doing / feeling with others, not even their parents.

He also played with a doll – and not by swinging it wildly against walls or anything. Again, something you don’t really think about if your child is moving along the conveyer belt of childhood like everybody else – a year ago, Captain Adventure would not play with a doll in a “make believe” kind of way. He might bash its head against a wall, or jump up and down on it, or use it as a pillow, but he wouldn’t prop it upright and play with it as though it were a person.

Today, he made a birthday cake for ‘the baby’ out of Play-Doh, and giggled while the doctor sang the Birthday Song (and watched her face avidly, another plus), and fed the doll with a fork, and used a knife to cut the cake…he didn’t want to give the baby any juice but, see, the thing is, he loves Play-Doh, and he’d been asking me for Play-Doh just forever, and we were O-U-T, out, of Play-Doh at home (it got left out last time), and HELLO, the Dr. Lady? SHE HAD PLAY-DOH.

Juice, shmoose. Hand over the Play-Doh and let’s get busy!

He made very good eye contact, and even combined eye contact (to get her attention) with pointing (to show what he wanted) and verbalized his desire (“Play-Doh? Greeeeeeeen Play-Doh?”). When she smiled at him, he smiled back. (YAY!!!)

Strange, that all these things you just don’t ever give two seconds thought to under normal circumstances can become Big! Important! Things! when your child isn’t, you know, doing them.

A year ago, he wouldn’t smile just because someone else was smiling. He wouldn’t look you in the eye, imitate what you were doing, or look where you were pointing. Even if you were excitedly showing him something: “Look! Captain Adventure! LOOK! See the unicorn? Captain Adventure? See it? The unicorn? In our living room! Look where I’m pointing! Helllloooooo, look at me, look where I’m pointing, look at this really cool thing, HELLO, is there anybody IN there?!?!”

He also showed some of his squirrelly behaviors, like fixating on a pop-up toy and refusing to acknowledge his name being called (hollered), even when I was touching him while doing so and pointing at the new, vastly cooler by the way toy.

Don’t bother me, Woman, I am engrossed in the popping-up of Disney characters!

He made some of his strange, non-language noises. He did his babbling thing. But he was also doing his babbling thing as a way of keeping an oar in the conversational river going between the doctor and myself, which is ‘social interaction’, which is a plus.

He ran on his tiptoes, like he usually does (another possible autism marker). He took a couple laps for no apparent reason, a kind of non-verbal “ummmmmmmmmm…” while he thought about what to do next.

He didn’t want to make the froggie hop, he just wanted to squeeze it. He didn’t want to play with bubbles, he wanted to get back to the motorized bunny (can’t blame him, actually – that was a cool toy).

In the end, he scored right on the cusp between “no” and “possibly”, one foot square in “no” and the pinkie toe of the other in “possibly”. Her overall feeling was that while something was definitely a little off for our little guy, she was not really worried about him.

And yes, I came (((this))) close to bawling all over her. I managed to hold it together until we were safely (hmm…‘safely’ may be the wrong word here…) on the freeway before I dissolved.

It isn’t like we can just go off singing into the fields and ignore him, assuming that he’ll just, you know, catch up all on his own.

But she was telling me that she sees him as having all the tools he needs to do what he needs to do. He has the Empathy tool (this is a big relief to me…I’d been seeing signs of it, like when he shares Good Stuff like potato chips and cookies with me or his sisters, but he still doesn’t seem to care about other people having owies or how we feel). He has the Talking tool. He has the Social Interaction tool.

He doesn’t need to be taught how to pretend he has these things – they are there. He just needs to be taught how to use them. Thank you, Brigid, lady of healing, poetry, guardian of children.

All the same, she felt it was more prudent to go ahead and officially diagnose it as PDD-NOS to ensure he continued receiving his assorted therapies and services rather than call it “not likely” and let them lapse. There was the usual discussion around how important it is to catch these things early and treat them aggressively, and she repeated her feeling that our little guy is likely going to get right back on track and be ready for kindergarten when he turns five.

In one year. (And two months.) (Gulp.)

Why do they grow so fast? Seems like every time I blink, one of them has outgrown all her clothes, or had another birthday, or taken up calligraphy, or is studying medieval French poetry or something. Sigh.

The planet is speeding up. Seriously. There can be no other explanation for the way time is passing so danged fast, these days.

10 comments:

gartlande said...

And , before you know it, they're going off to college! Congrats on the good eval.

21stCenturyMom said...

Sounds like things are going swimmingly with the Captain but I agree - leave a diagnoses in place so you can get the services.

For what it's worth - I was told that children are not really capable of feeling or expressing empathy until they are about 6 so I'm surprised that conversation came up. If he is empathic then he's somewhat ahead of the curve so yay!

Steph B said...

Aw, sounds like progress! The Captain is coming along beautifully. And you, my dear, are an awesome mom. It takes a lot of time and determination and sometimes even downright bullheadedness to advocate for a child with special needs, and you're doing a grand job. Hang in there.

lelah said...

Wow- what a great thing to read! I've been following your blog for a little bit now, and I am always curious to see what the little guy is up to. Keep it up, Mom! You're doing great!!!

knitterdmb said...

So glad you found a professional able to look at Captain as an individual instead of a set of diagnosis! What wonderful news. He will amaze you in the future.

Yarnhog said...

That all sounds like good news! He's getting better but he'll continue to get the services he needs.

I've always been struck by how the days can go so slowly, but years zip by so quickly.

Science PhD Mom said...

So glad that he did so well. Next year, who knows where he will be? So many leaps and bounds in one year, congrats for making it through it all!! Go Captain Adventure!

Amber in Albuquerque said...

Please take some time to bask, simply bask, in what the therapist said. For the first time in my oldest's four years of school (pre-K through 2nd), I had two, count them two, therapists tell me recently "yep, he's ADHD all right, but I don't think he needs psycho/behavioral therapy...he just needs adults who understand what they're dealing with." I did cry. I'm still crying, with relief.

One piece of unsolicited advice (and feel more than free to ignore it)...hindsight being 20/20, I would have started the oldest in kindergarten one year late (just after he turned 6 as opposed to just after he turned 5). His kindergarten teacher (who 'got it') said that, in general, that's a good rule for boys anyway. But I also understand the economic and other considerations all too well.

You are an amazing mom (and a darn good blogger)! Best Wishes!

tconi said...

The planet is speeding up. Seriously. There can be no other explanation for the way time is passing so danged fast, these days.

In your spare time - you (& the older girls maybe?) should read the book *The New Policeman* - which addresses just this topic.
It also takes place in Ireland and has much music & fiddling.

Anonymous said...

I'm glad to read that you are getting Captain Adventure the evaluations he needs and that it is good news!

Here is an opinion that you of course can ignore if you wish, since I'm sure you are given a basketload of unsolicited advice...

Please do, unless you have already, get him tested for food allergies. PDD-NOS children are highly sensitive to different foods, especially wheat and milk. With the amount of baking you seem to do, well, it would be good to investigate. Here are some links:

http://www.foodallergytest.com/autism.html
http://www.autism.org/allergy.html

Best of Luck!