Friday, October 03, 2008

The Assessment: Part 2

Well, the numbers are in.
No, I am not talking about the debate.

I am talking about The Assessment. The one which was done three weeks ago and the results of which just graced my presence.

The boy? He has The Apraxia.
In other words: Teh boy don make no sens.

Okay, that's not entirely true - just a family joke. He makes sense to us, sometimes. But perhaps only six people he knows can actually understand him at all...and still....just sometimes. His family, his speech therapist, and two highly gifted friends of mine who remain my very best friends because they claim to hear (and understand!) him say complicated things which are usually run together very fast.

One indicator of apraxia is a large discrepancy between receptive and expressive language skills. As it became more and more apparent to me that this is what his delay really was, I was told repeatedly, "But not the only indicator! You can't go just on that!"
True enough, but Bubbles meets nearly all of the criteria used to diagnose apraxia, so I have been more or less convinced of this possibility being a reality for the past few months.

And then came the report.

(sucks breath in)

Start internal dialogue: Ooooookay. This is fine. You knew this was the reality!
But ZOMFG my baybeeee. He's got a NEUROLOGICAL ISSUE.
Oh my god listen to you - we have already gone through this - it's a neuro-processing disorder, okay? It's not a fucking brain tumor. His brain is malleable. With the right help he will learn to use that part of his brain and, albeit, with challenges, he will be able to communicate!
But OMG what about the kids who never become verbal communicators? What if someone suggests alternative communication devices to us?
Settle down, woman! You got him into speech at two yearsold! He is already communicating verbally. He shows signs of improvement and the desire to be challenged and to learn to communicate with his peers!
But what if......
People will think he's retar- mentally challenged! The world is gonna shit on my baybeeeee!!!
Shut up. Seriously, you are crying now and that is so emo-over the top. I cannot believe you are reacting this way. How many times did you say yourself you knew it was apraxia?
Waaaaahhhhhhhhhh. Oh, sniff sniff, YOU shut up. I can have one fucking moment to grieve and be fearful, so stuff it.

That was that.
I am now far more composed than I was one hour ago. Far more.

Really. I am okay. He's going to be okay. Well, let me get back to you on that part specifically, because there are many variables, the biggest one right now being the school district and what they will offer him for speech therapy at his IEP (which will occur in the next four weeks, before he turns three).
But he will be okay. He also has the personality to compensate for his funny sounding language. I just hope that it can't be crushed by his frustration.
His receptive language skills ranked in the 63rd percentile, which means that he actually tested slightly above what is considered 'normal' for his age range.
His expressive language skills tested in the 16th percentile; a significant delay and a substantial discrepancy between the two skills, which generally develop in a harmonious partnership.
His expressive language is developmentally appropriate for a 26 month old.
When I think back on the behavior issues with which we were dealing, and the tantrums...and I feel so sad for him. How frustrated he must have felt, and no wonder we were all experiencing over-the-top terrorist two year old.

In the past two months, Bubbles has turned his first (rounded) corner. He now volunteers the use of complete sentences: 'I want shoes off. Help, please.'
He has finally suddenly started to narrate things (without being prompted) in our environment, especially when driving around: 'Oooohhh water, ocean BIRDS! YEAH BIRDS! Birds fly fly fly fly! Mama! Fire truck! The bus, the BUS THE BUS!!! Nother cars! I want juice box, pleeeeeeeeease!'
Of course, only some of it comes out as completely intelligible, but he is actually practicing words he already knows and has been working hard to learn, so most of it is somewhat clear. He's not trying to say things like: 'Look, Mama - another Obama sign! HAHA that rhymes! Can we please stop for jamba juice??' ...or any of the other things he hears his sister crowing as we roll along!

So, there's the update.
A large dose of reality, plus a touch of sadness and fear, with a side of hope.


Special Needs Mama said...

Oh I think you have captured the essence of every loving mother's reaction to an assessment. Sigh.

plaidshoes said...

I am so glad you were able to get an accurate assessment! I hope now he is able to get all the help he needs!

Squid said...

With you and your fierce advocate knowledge at his back and the happy inclusive attitudes you've described at the neighborhood schools, he will be set during the most tender and critical next stages of language development.

That you know this already doesn't make it any easier.

As always, thank you for telling it like it ought to be told. And for sharing even when you're torn up inside.


ms. changes pants while driving said...

that inner voice is sometimes SOO annoying. all you want to do is whine and wallow and feel sorry for yourself or the situation, and the stupid inner voice with it's REASON and RATIONAL(ity? is it rationality?) is annoying.

imagining that inner voice tied up in a chair with duct tape over its mouth doesn't do anything, either.

totally annoying.

heres to hope =)

oh, and i have no idea where i found your blog.

Anonymous said...

Gwendolyn, don't mean to put a positive spin on this, but he sounds like such a NORMAL boy verbally- OFTEN they can follow directions very well, but can't articulate what they want to say- even to the age of 3- in fact, it sounds like Bubbles is able to communicate pretty well from your descriptions- esp. for being under 3. Being a mama of 3 boys (and working in the therapy realm), I have to say, I have a superstrong feeling your boy's gonna be JUST fine! But, you are a very responsible and involved mom so you will ensure this will happen. Best of luck

Anonymous said...

Now that I think about it, I'm unclear what Bubbles age is, but my comment still holds true...

gwendomama said...

Hi Anon;
While I DO appreciate the positive spin on it, I have to say that the sentences I posted today are newly emergent skills.
Also, when I mentioned that most of his words were unintelligible to most people, I was not exaggerating.
For instance, this:
'Birds fly fly fly fly! Mama! Fire truck! The bus, the BUS THE BUS!!! Nother cars! I want juice box, pleeeeeeeeease!'
would actually sound more like this:
Burr fiy fiy fiy fiy...mama! Fiy TUCK! Da bus, da pus, da BUS! Nunna cahs! I. wan. juuu. boss. meeeeeeeeeeeese!'

I think he will be fine too, but I can't underestimate the amount of help it will probably take to get him there.

Kate said...
This comment has been removed by the author.
PiggyToes said...

Hugs to you and Bubbles. He's a sweet special boy with so much love around him. He'll be able to soar through this and land just fine.

DadaMama said...

Oh, that's scary. But good. It's good to know what you're dealing with.

We're rooting for your shining blonde boy down here!

Also, that picture kinda looked like you let Bubbles play in traffic. Then I realized the bus is parked. I am SO QUICK.

Anonymous said...

I am sorry to hear of the diagnosis, but glad, too, if the label will get him better services. Hugs, Anita R.

Anonymous said...

Hello Gwendomama, listen, you are obviously a wonderful mother - I just know Mr. Bubbles will be fine- because 1. he has an older sister who was probably alot more verbal at this age and that's nervewracking for any mom, 2. Bubbles does not sound very shy- which is helpful because if he wants water/anything and he can't say it he'll point and try and get it...
3. he is making his needs known verbally- even if he can't articulate very well at this point- this is a HUGE indicator that he will be okay. I'm just saying, don't be shocked if later in life he's a linguist :-)

Eliza said...

That picture says so fucking much. I'm sorry. When we got the diagnosis of the FRCZS I was the same way--I'd known ever since I Googled the name of the syndrome on the Post-It note from the doctor's office that my soon-to-be-ex handed me that that was me, that was my kids, that was US, but the night after the geneticist's appointment where I held it together and asked intelligent questions and presented an organized collection of pertinent information I PITCHED A WALL-EYED FIT and blogged it all out and...dang. If it's any consolation at all I had no hope whatsoever going into the school year that my 4-year-old would EVER be mainstreamable but a month in the teachers seem sweetly confused as to why exactly we had any doubts and the educational therapist is effusive in her praises of the child's progress and NEVER underestimate the power of peer pressure :) I think Bubbs will be fine. He's got you as his mama and there's obviously a lot going on in that sweet little duck-fluff-covered head of his :)

Mama Deb said...

Why, oh why did my big long response have to disappear?! Argh.
Anyway, I'm totally understanding how you felt hearing the diagnosis. I was never really able to describe just how I felt when we finally got our autism diagnosis. I didn't really feel any different at first, to be honest, though in the back of my head the voices were chatting up all the worries.
But this is a very good thing in terms of services. Keep us posted on how that all pans out.
Going into preschool through the district was awesome for Miles at three. Of course, that all changed when we moved here, but that's a whole 'nother can 'o worms!
Big hugs.

RoseRedHoofbeats said...

*HUGS* to you! I'm glad that you got a diagnosis- I was once diagnosed with a rather unsavory mental disorder, and shocked and appalled because I didn't think I was THAT bad, but my shrink explained it as, the diagnosis tells them what approach will work the best. The diagnosis is NOT the answer- the TREATMENT is.

He sounds a lot like one of my friend's kids, who at the age of FOUR said her first intelligble sentence- they were watching Harry Potter and she says, clear as a bell, "Harry Potter does magic!" Before that she had just strung together words like your example above. After that, it was like it just clicked and you can't shut the kid up. Even that one video of Bubbles freaking out over the frog being stuck, would have been totally beyond her. So this is totally fixable and I really think you guys are gonna do great, because you have SUCH a good handle on it and you got him the help he needed so early and you appear to have such wonderful people working with you.

Anonymous said...

SUCH a cute kid!