Wednesday, November 2, 2011

Meeting " life skill " goals ...

I gotta tell you, I hate that term "life skill".  If you happen to have a child who has had an IEP, or has participated in any type of therapy, especially one where they receive services, and said services are paid for by entities other than yourself, I am certain you are familiar with the " life skill" thing. Zoey receives services through CCS here in California and if she does not meet or is at least making strides towards afore mentioned life skills, well, she is out of luck. She will be dropped. See my  "Crossroads kind of Suck" post  on my thoughts on her soon to be former PT and her walking "life skill".

My feeling is, and has always been, given Zoey's plethora of diagnoses, that her life skill, in this moment, is that she is simply living. When we start writing goals to dress and undress and stand at the sink and wash hands and so on and so forth, I just cringe. I have often said to people, try immobilizing one of your arms and one of your legs and then go about your day and see how that works for you. Throw in a cognition issue and well, you have just brought the difficulty to a whole new level. The idea that Zoey will dress and undress herself, unassisted, is, in my opinion, asinine. Just saying. But I will play along with the powers that be, but on the home front and in my time, I do things that I think are more within reach. Like how about we hit the feeding front.

Zoey receives most of her nutrition via her g-tube. After, kicking the oral feed habit after seizures and chemo, food to her, was a no go. Until 6 months ago that is. I finally have her where she eats 3 packets of  baby food, three times a day, and another is fed to her at school. HUGE progress. At school, her amazing aid, whom by the way, I would do anything to have with me for well, forever, she decided it was time to try hand over hand feeding and Zoey has been agreeable and on occasion, she will attempt to do it all by herself.

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Look at her eyes crossing because she is concentrating so intently.

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Look at her little left stroke hand fisting, because her right hand is engaged. Hate that.

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Switched to the maroon spoon with a bigger bowl surface.

So we gave it a shot the other morning at home at the end of her feeding and she managed to hang with it, until the very end, without hurling the spoon across the room. Stand by for the video however, and see how things go when she grows weary with playing along with this particular life skill practice.



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20 comments:

Elizabeth said...

You know -- that is HUGE. And I'm not sure why you're shrugging about the dressing herself. We need to talk.

Karol said...

I just had to smile through that entire video. She'll get that eating thing down when she's good and ready. I love the occassional word that I heard. Talking....now there is a true life school, one that we will never achieve with Mr Moise. So who says she doesn't have life skills?

My 6 Beautiful kids said...

Zoey is an amazing beautiful little girl..Her face just make me smile.. Love this little girl..

Anonymous said...

love hearing her words! Way to go Zoey Grace!

Aunt Bluebelle

Cammie Heflin said...

That is wonderful!!!! HUGE! She is such a little miracle, doing things in her own time, I love it! Makes me sit back and realize that Addy is the same way. Addy's verbal but not as communicative as Zoey and the feeding thing, waaay behind! You go Zoey!!!

stephanie said...

AMAZING!!!

And in Zoey's defense, she said "NO", before she threw the spoon. She was making it quite clear she was done:)

I'm still amazed she is eating!!! Such a huge accomplishment.
And as far as the CCE services screw them. How can they help her anyway if they don't think she will walk. How do you put a cap on a childs ability and progress.

Hugs!!

The Annessa Family said...

This is so awesome! And the video made my day! She has amazing life skills...she is a fighter! She FOUGHT like hell for her life...sounds like one awesome skill to me...the ultimate skill in fact.

Brooke
www.TheAnnessaFamily.blogspot.com

Catherine said...

Hi friend. Just thought I'd let you know I'm still around - watching beautiful Zoey take on the world. I'm reading a wonderful book right now. It's a bit controversial to some, but I think, because of your frustration about "life skills", you'd get a lot out of it. It's called Disability is Natural. It's changed how I think about my boy -

Mary said...

My goodness, she is absolutely adorable! Way to go Zoey!

Anna said...

She is doing incredible. I am choosing to be thankful for all the things the medical community told you in the beginning that havent come to pass. Thankful for seizure control- infantile spasms being a thing in the past. Baby steps.

Scrappy quilter said...

This is HUGE...she has really come a long way. I love that she is starting to feed herself even if at the end she's telling you she is done. And saying some words....M at 21 still doesn't. WTG Zoey!! Hugs

Becca said...

I just want to scoop her up!!!! Love her!!! Seriously, this IS HUGE!! Just think about how much she has accomplished in the last 6 months, and how much more she can accomplish in the next 6. Can't her progress in one area ensure that her services are not cut in others? Wouldn't that show that something that was previously considered unattainable actually IS attainable, and that services should be continued to push her to that point? Yeah, yeah, I know, counties don't see it that way, and are probably only too happy to cut back wherever they can, one person at a time. :-( Keep fighting the fight! Smooooooches to sweet Zoey!!

The VW's said...

AWESOME job Zoey! You are so inspirational! My favorite part of the video?....When she threw her spoon! I love the spunk! :)

Lacey said...

I remember when the PT was trying to say in any way that Jax was making some progress, so he wouldn't lose services either. In the last year he did finally make some very small progress, and we all rejoiced!
Zoey is so amazing, and I love seeing her eating like that! Way to go Zo!

Shelly Turpin said...

Absolutely beautiful! Way to go Zoey!

Have you seen those bowls that suction onto the table? But maybe then she couldn't scoop so easily. Sorry - always on the look out for ways for my girls to be more independent.

Loved her talking - and telling you when she was finished!

blogzilly said...

I understand.

Peter Olson said...

You must have a patience beyond imagination.
I pray that your efforts will be rewarded with progress toward those "life skills".
Zoey demonstrates a very strong will.
Keep up the great work! :-)
You guys continue to amaze me. :-)

colleen said...

I worked with the woman who invented the idea of looking at "life skills" ability AKA adaptive behaviors in children. Prior to her invention of an adaptive behavioral assessment ( Vineland) the ONLY thing professionals used to evaluate children with special needs was based purely on the results of cognitive testing. She would be horrified, but probably not surprised, at how these "life skills" are now being manipulated by the state system as a way to save money and deny services to the very children she was attempting to show had abilities missed by solely relying on cognitive testing. Ignore most of the world, love your child as you so clearly do, and provide her with everything she needs to do her best and listen selectively for those who "get it". Choose those people as Zoey's teachers. As you always say, Zoey will lead.

Michelle said...

She looks so determined! What a great accomplishment!

TherExtras said...

'Huge' in my book, too!

My whole series of posts on eating and feeding are linked in the right column.

I'm with Elizabeth on not giving up on dressing.

Barbara