Tuesday, April 5, 2011

use SpongeBob, Trevy



I have been wracking my brain for a creative way to make sure Trevy uses his weak side consistently.  Because unless we (meaning everyone who plays any part in Trevy's developmental progress)  force encourage him to use it...new pathways cannot be formed.  Eventually the plasticity clock will slow or stop altogether and we'll lose this time.  This amazingly miraculous time of new pathways forming where they shouldn't.     


But it's just so easy to miss.   Left.  Right.  Left?  Right? 


I (along with Grams and others) have witnessed professionals missing it.  They'll comment to me on how well he's using his right hand or foot.  When I'm watching him only use his left



Sometimes it  absolutely blows my mind too.  Especially with the hand, which is clearly hanging dead by his side. The thing is...I know he has the ability to use it.  All it takes is a gentle restraint of the left arm in tandem with a gentle nudge on the right...and he'll engage.   


See Daddy squeezing Righty?  Yeah, we're so committed to this we do it in our sleep! ;)


I do this all the time at home.  Because I'm mommy.  Which means by definition alone that I'm fully committed to drawing out his fullest potential.  Every decision I make regarding therapies and what-not carries with it the weight of his future. There is no one (outside of immediate family members like Daddy & Grams) more entirely pledged to his very best than me. 



Now see Trevy engaging Righty!  Although he was being very cheeky during this photo shoot!



Now...Trevy is surrounded by teachers and aides and therapists who deeply care for him.  And I am so very thankful for those who are invested in him so much!  But the reality is...at the end of the day they punch out.  And go home to their lives without Trevy.  I never get to punch out.  He comes home to me.  They don't have to spend hours upon hours wondering just how many nights he'll come home because he can't take care of himself.  Or wondering if we had just pushed a little more...maybe he could have been more.  That is mine to wear.  And it shows in the ever deepening lines around my eyes.  Which thanks to Picnik I can "soften" away in pictures.  It is mine to advocate.  And it shows in the perpetual exhaustion that I carry with me all the time.  Wish Picnik could do something about that too because the four cups a joe a day aren't really doing the trick.   






This post is getting WAY wordier than intended! 


So I'll cut to the chase.  Which by the way...isn't about bashing his therapists.  It's about stimulating everyone in his life see him with more clarity.  Because one of my greatest concerns is that many of his deficits (especially in both fine and gross motor areas) are so very subtle that they're missed altogether.  Or eclipsed by his bright smiles and silly sense of humor.  But we need to see the weaknesses.  Because they are there.  And missing them is only stealing from Trevy precious, amazingly miraculous time.  And I deeply believe seeing...really seeing...his weaknesses will only help all of us push him just a little further.  All.of.the.time.  


Clearly I have spent lots of time mulling this.  Chewing it.  Spewing it.  Fretting it.  Trying to just think of something (outside of me being with him every single moment of every single day) that could help provide clarity.  
When I look at Trevy I never ever mistake one arm for the other.  One leg for the other.  I rarely make such pointed blanket statements.  Rarely.  I don't like making such matter of fact statements because I don't like to give myself that much credit.  


But in this... 


I do.  I never ever never mistake one arm for the other.  I never ever never mistake one foot for the other.  I notice the most minutest of details about his movement. 


It's almost like when I look at Trevy his right leg and arm are pulsing bright red lights.  Unmissable.  


But I'm mommy.  I'm Designed to notice such things.  


And then I had the best idea!  Mark his right arm and leg for them too!  Make it unmissable.  Unmistakable.  


Have I ever mentioned that I like to complicate things?  Oh gosh.  The ideas that blew around in my head ranged from sewing bright red patches onto the right arm and leg of every single piece of apparel he owns to tying a bright red bandanna onto his right arm and leg during therapies.  It was Grams who finally said...


what about these puppies... 



Wrist / Sweat Band: Disney's - MICKEY MOUSE (Winking)




Holy Smokes!  Is that brilliant or what?!  


Adorable brightly colored sweat bands with his favorite characters (which is all of them) already sown on them!  I may have to purchase Mickey eventually.  But I started with a pack of four bright yellow SpongeBob Squarepants that I found in the sports aisle at Target.  For ,like, $3.99.


I sent them to school with him today.  To put on during his therapies.  Or all day if he wants.  Because the beauty of it is...it'll help him too!  Instead of saying "use Righty" - I can now say "use SpongeBob".  And I think it'll be more effective for him too!  


I don't know.  We'll see.  I may have to sew them on after all if he figures out how to take them off!  


Because he is cheeky, after all!  

16 comments:

love2teach2day said...

I think you are a brilliant mommy and advocate. They say that it takes 10,000 hours at something to make a person a professional/specialist. We mommys of kids with special needs can quickly rack up those hours. When I was a teacher, I thought I knew more than parents. Now I'm a parent and know how naive (ignorant/stupid!) I was.

Thanks for your post and for following my blog.

Anonymous said...

Sounds like a FAB idea to me, let us know how it goes :)

kt x

Kevin Jordan said...

Wow what an awesome idea! Zac has a lot of trouble using his left arm since his right works so much better. He loves Blue's Clues, so I want to try this with him too! Thanks!

The Lundgrens said...

Danielle!!! Truly brilliant!!
Luke vision impairment requires us to start early with Left and Right, since he'll be very dependent on directional words for independent mobility. We'll work on Right for a while and then target Left. I'm thinking a bright red Elmo one is what we need. Headed to Google right now!!

Housewife said...

Great idea!
Easy. Fun. Inexpensive. Fun.
Recognizable.
Love it!!

Sinead said...

THAT IS SO PERFECTLY AMAZING.

happy's mommy said...

So the home-report from yesterday came in that it works great for his therapists!

I'm a Kinesthetic Learner by nature anyway. Which is really just a fancy way of saying I need input from ALL areas...so the visual cue would be GREAT for me if I were the therapist. Especially when working with multiple kids with various areas of need...

it can only help if you ask me!

...d

Jennifer said...

Yes, a parent CAN do so much much more than a therapist because of the time you are with a child, in tune to your child. I actually tell parents that the first time I treat their children- my 30 minutes compared with their 24 hours a day...
Great idea Gram!

TherExtras said...

I like the wrist bands VERY much. Glad they got reviews at school.

More, I like your tiny L restraint coupled with the tiny R nudge. Too bad that method was not picked-up by others.

BUT, I find verbal prompts to be less than effective. Those cerebral connections are developed in the direction of thought -> movement. As in he moves as directed from within....

And so, I offer you this bit of information:

http://www.cincinnatichildrens.org/assets/0/78/1067/2709/2777/2793/9199/fa42566b-64d7-4d5b-8c38-62a82d660937.pdf

Barbara

happy's mommy said...

Thanks everyone!

Barbara...specifically for you. Thank you for sharing that article! I'm going to add it to my resource list. We have Constraint Therapy offered at our local children's hospital; however, it is VERY expensive ($15k for 8 weeks). And not covered by insurance. A friend did offer to help us fundraise...but I just couldn't bring myself to that point.

However, after reading over the article you shared...I can't help but think it's possible this is something I could do on my own? I can purchase an arm brace and an ACE bandage...and wrap him up for 2 hours a day...easy peasy. But I thought I'd let you weigh in on pros & cons of such a path? Being the resident expert that you are!

...danielle

Andi S said...

Just a thought....

You could ask your OT/PT for a script for elbow braces. Or you could just get a pair, I think they are $30 or so. We got Emma a pair for at-home OT use, but I mostly use them to restrain her arms when she's hitting herself. But you can use them so he can't bend his arm and maybe use the other arm instead.

I've also seen the therapists take an ACE bandage and wrap it around to pin the arm to the body so it's immobile.

Barbara said...

I would choose CIT for my own child. Were there any contraindications in that article? Seems to me that a cast (used by many CIT programs requires more oversight by professionals ($$) than a soft 'constraint'. Also, what a parent does not have is a 'toolbox' of specific activities. But like homeschooling, children often do well enough under the direction of a parent. :)

Barbara

happy's mommy said...

Good stuff, Andi...thanks!

Oh Barbara...so your thoughts can only lead me in one direction. Right? Yikes. Since the one thing I'm lacking is the "toolbox" of specific activities...and since your "toolbox" is overflowing, I'm sure...

...danielle

happy's mommy said...

I should add...I didn't see any contraindications. I DID see tons of educating the parents and making sure the parents are following through at home...

I really think if I had a little guidance I could do this at home...on my own. And I can't say I haven't already thought to do it. In a way I do do it...by holding his left arm and nudging his right. A brace would just make it easier...for mommy. :)

Anyway...

...danielle

TherExtras said...

If I were going to design my own CIT program I would be sure to spend part of the time working the shoulder - variations on tether ball. And then the muscles of the elbow - build some 'guns'!

'Fine motor' is so easy to find - betting that both his teacher and the school OT would be willing to share....
Barbara

Andi S said...

Oops. Guess I should read the comments before I write my own.

I've seen the regular private PT doing the ACE bandage. If you are going that route, maybe they would be willing to look into it and try it out if they aren't familiar with it.