Friday, January 21, 2011

See what you're made of by what you make of me*

Way back before Christmas we got the results from Maya's evaluations (OT, PT, speech/feeding, psych).  These are the evaluations that she needs to transition from the Early Intervention system (which runs from birth to 3 years old) to CPSE (which is the preschool program, for 3 to 5 year olds). The evaluations are meant to determine whether the kids still have delays that are signficant enough to qualify for services (therapies, specialized preschools, etc). 

Yeah, we still qualify.

Big time.

I knew that Maya would test "badly", I'd even been warned by the therapists and developmental pediatrician that she wasn't going to test well . . . some of it is because she lacks the fine motor skills to complete some of the tasks, she can't verbalize anything so automatically fails big chunks. Since she can't walk or stand (well, sometimes she can, but not all of the time, she still topples) so she automatically gets bumped down to a 10/12 month level for PT. Oh, and the psychologist was 45 mins late and started evaluating at 6:15 (getting mighty late for a 2 yr old), seemed like she was 21 years old, wasn't engaging at all, let Maya lay on the floor and not participate, and didn't ask me if her behavior is representative of her skill set.

(Not that I judge or anything.)

Anywho, the results arrived and I reminded myself "she tests badly, she tests badly" as I nervously fumbled to open the huge envelope. I started skimming, looking for some data to jump out at me, and then I saw the percentages:

Cognitive development:  0.4 percentile  (translation: she allegedly performs as well as or better than 0.4% of children her age)
Social/emotional development: 16th percentile
Physical development: 2nd percentile
Communication development: 1st percentile
Adaptive Behavior: 0.3 percentile


I shook it off, and put the envelope aside. 

Recalibrated myself with the reminders of bad testing. 

Spun it in a positive way by telling myself  "Fantastic!  This will make it much easier for us to argue at the IEP meeting to get lots of services and a one-on-one in the classroom!" 

Absorbed the parts of the report that said things like "her score therefore may not reflect her true skills". 

Tried to push it to the back of my mind. 

Wondered about how to present the information to Dave, not wanting him to take the report too seriously or get bummed out by it.  When he came home I gave him a light and breezy summary ending with " . . . and so for most things she was down in the 1st percentile."

He paused and pondered for a split second and then came back with " . . .1st percentile?!  We're number 1!  We're number 1!  We're number 1!"


So that's that.  I've basically decided that I want Maya to go to a "center based" preschool, which means that most of the children in the school will have various special needs, and therapists are on staff----so she can get the bulk of her therapies at school, and be a "normal" kid when she comes home (well, partially normal . . . with parents like us, I'm not sure she has a shot at "normal".)  I've seen one that I really liked, but the process of meetings and visits is long, so we won't know anything for a while.

The whole evaluation process, combined with visits to the preschool, got me thinking about snap judgements . . . you know, the way you form a rapid assessment when you see someone/something new.  One of the non-logistical reasons that I'm excited about Maya going to a center based preschool (instead of a mainstream one) is that walkers, canes, splints, assitive technology (like the iPad)-----that's just normal stuff there.  Background noise.  The teachers there are so used to seeing all of that stuff that it's just not registered in the same way that it is by people who aren't used to it.

Here, let me show you what I mean:

Maya at the Stepping Stone Museum in CT, where we went with her cousins Collin and Emerson.  Sorry for the lousy cell phone picture, but it illustrates my point.

I look at this picture and think it's adorable.  I love how she looks little and curious, and with the cute mini-walker it screams to me "Out of my way, world, I'm a-comin'!"

But I can see a flicker in the too-long-lingering eyes of some passersby that says "Oh, that poor little girl".

And I have to resist the urge to go to them and say "No no---this is fantastic!  Look!  She's going, she's independent, she's charging into the great wide open!" 

It's important to me that Maya's teachers have the "go do it yourself, Maya, you're perfectly capable" attitude and not the "let me just help you walk, Maya, I know it might be a lot of work" attitude.  I can see how this is more likely in a school where she's not "the cute one with the walker", because there are lots of cute ones with walkers.

She'll still be the cutest, obviously :)

(As this is one of my more obscure song quote titles, I feel obligated to cite Ani DiFranco for the great quote)


Lisa said...

When you take into account all the figures for Maya's evaluations, the fact that she scored on the 16th percentile for social/emotional development shows just how much fantastic work you have put in to help her. Well done for everything you have done. Maya is such a lucky girl having you as her Mommy.

kelly said...

I understand that feeling completely. My son, a 3 yr old with down syndrome, just aged out of early intervention. I try to do the same thing as you and focus on the fact that well at least he will get the therapies he needs, and that technically he needs to do poorly to get those required services. But reading those reports, well mind my language, suck!

Melinda said...

I can so empathize with you. My son is now in Kindergarten and when he transitioned from EI to Preschool, the test results were still shocking, but it meant he would get what he needed. Same thing happened when he went from Preschool to Kindergarten. It all works out in the end.

Go Maya!

Jan Bernstein Chargin said...

The photo of Maya is adorable. She will be "The cute one" no matter where she goes!

Kelly said...

This blog post made me feel so connected to you. Our daughter is special needs and our first big test experience was so similar. She is now in a great special needs preschool where people understand and dont pity but push her.
So yeah Maya...welcome to number 1. You have got some great friends T the "top"!

Kelly, mom to AnnaKate in SC

Erica said...

we are nearing the end of our 2 years in Avery's special ed preschool and I cant tell you how my perception has changed in those quick 2 yrs! When I went to visit I got dizzy and left in tears. no, sobbing. a "severely handicapped" class? no way, not my kid. but guess what, it is a great place for her. Her teacher will be part of our family forever and Avery LOVES it! and loves the bus! I remember reading the evals too and thinking, this stinks, BUT it will get us more services-which is a tricky way to feel. anyway-just wanted to say-been there-and hugs.

anne said...

David, you are funny, really, funny. I don't know who in your family is the luckiest - Maya for having both of you; Dana for having David; or David for having Maya. All I know is that you two are dealing with all this better than anyone I know would deal and I am and continue to be totally impressed and inspired by your attitude. You guys ROCK. Really.

anne said...

I meant to say "David for having Dana"...oops