Maybe I am sad because I see how hard she is going to have to work to understand how the chair works. Maybe I am sad because perhaps, I am unsure she will ever even understand the concept of how the chair works at all. Don't think poorly of me because I say that. Try to understand and maybe, if you have a child with special needs, maybe you will even relate to why I say that to some degree. Maybe my sadness comes from the fact that I just dislike therapy altogether and seeing her in that environment makes me want to scoop her up and take her to the beach. To the ocean. Where she is happy and carefree. Even on a cold and windy California day. I need to find the balance between the two. I know I have to. But honestly, on somedays, I just don't want to.
“When you have come to the edge of all light that you know and you are about to drop off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught to fly.”~ Patrick Overton
Saturday, July 30, 2011
Powerchair video and a quick beach video as well ....
Maybe I am sad because I see how hard she is going to have to work to understand how the chair works. Maybe I am sad because perhaps, I am unsure she will ever even understand the concept of how the chair works at all. Don't think poorly of me because I say that. Try to understand and maybe, if you have a child with special needs, maybe you will even relate to why I say that to some degree. Maybe my sadness comes from the fact that I just dislike therapy altogether and seeing her in that environment makes me want to scoop her up and take her to the beach. To the ocean. Where she is happy and carefree. Even on a cold and windy California day. I need to find the balance between the two. I know I have to. But honestly, on somedays, I just don't want to.
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19 comments:
Awwww, Bless her!
Love to all of you!
Both of these videos bring back memories of Moise's younger days. We opted out of the powerchair because given his nature we were pretty sure he would get into alot of trouble with it. Yet I so clearly recall the mix of emotions when we put him in that chair the first time. Now he's up in a walker, though for how long I don't know. Hoping we don't have to go back to a chair. And the beach? How well I recall our beach vacations becoming increasingly difficult as he grew. We used to take a sled to the beach. Then he got too heavy for anyone to pull. Finally we discovered beach wheelchairs. They are ugly, for sure, but make the beach much more enjoyable once they are just to have to pull around anymore.
wonderful, wonderful! Isn't it great that you can scoop her up & head to the beach any day of the week. No snow or ice to battle..
great...
Aunt Bluebelle
PS I'm over-the-top about the boys' (big & small) trip in a few weeks. Everyone is so wanting to see them May be the "girls" can make it next time....
(or better yet - EVERYONE)!!
I understand.
Look at Miss Zoey make that chair go! I would run to the beach away from the world anytime! I think lately it is the dang trach that I want to run away from! Grrr!
YAY Zoey!
I absolutely LOVE both of these videos! She's going to figure out the chair, you can tell in her face! She's such a determined little thing! It's kinda cruel to post cool pix at the beach while we sit landlocked and sweltering that we lose our hair (two more chunks have come out :()! Working with Denise for October!! I am willing to come and get you guys wherever you are!!!
I get it... thank goodness you have the beach to escape to after the dreaded therapy.( unlike where we grew up!)
She is so smart! She's going to be zipping all over the place. How will you catch her!! LOL
It's freedom! And independence!
And can I ask just what is "cold" at the beach in July, in CA??
Hugs!
It is hard sometimes - you want so much more - and you feel like your constantly have to limit your dreams. But then I remember that we get a whole new special set of dreams and experiences that can truly be amazing.
It's a LONG road - Brad is 37 and I still find myself sad when i realize the limitations.
But remember - those limitations are NOT Zoey's, they are not Brads...they are OUR limits...society's limits.
To Brad, his life is beyond charmed. Pizza, Shirley Temple, balloons, family...the simple things make him happy and fulfilled...
If only we could ALL be so easily fulfilled by the simple things in life.
Love to you!
Brooke
www.TheAnnessaFamily.blogspot.com
It's a little of a protection principle, maybe? But maybe a perception principle.
You said your instinct is that you wanted to scoop her up and take her to the beach. Because you saw her struggling with something like the power chair.
I would ask you a question, would you say that you had a furrowed brow more when you were shooting the video? Or more when you were watching it?
Wheelchairs, power chairs. Those are heavyweights, things that when your child is in it, they tend to bring out...not the worst in people, but not the grace in people either. It's an awkwardness that I mean, and I don't know a good term for it.
I'm explaining this very badly aren't I? Sorry. OK let me try another way from a perspective of when I watch Bennett try to talk. I want him to advance in speech, and I love Bennett more than you can possibly imagine. Well, I know you can imagine it. Anyway, when he tries to say new words after I say them there is a joy to that I can't describe to people that transcend the joy I felt when Carter would say words. But there is a profound sadness to it too.
Because when I look at Bennett I know that no matter how much therapy we have, no matter how many hours we work, how many years we try, there will be very few people in his life that will treat him like he I want him to be treated, because he is different, and that will never change, and so I just want to keep that moment that he and I are having, in our living room, or in your case the beach, where we are sitting looking at a book, just he and I and no one else and no one judging him or looking at him strangely or teasing him.
But I know that I can't. That he will one day be out of my range and that I just have to come to terms with it.
But I do find that those kind of thoughts are always more difficult to manage when i am watching video of what he is doing instead of just 'being' with him, because the detachment allows for more introspection about his future, and I don't need to be doin' that crap! :)
BLOGJACK!!!
The videos were cool, though, from an OUTSIDERS point if view. :)
that's so cool! Go Zoey!
:)
I think Zoey did a great job in the power chair!!! I've seen kids who have had it for a while, do so much worse! Zoey seems to understand most of what you tell her...she's a bright little girl and she WILL get this! If Reagan could only do a few of the things Zoey does, we'd be head over heels!!! You see it all the time so it's hard for you to get perspective of where she was a few years ago and where she is now. She's come SO far and she's going to continue to make progress!! She's an amazing little girl!
WOW! She's doing great! I wish Gavin could learn to cruise around in one of those things! Great job Zoey!!!
Heather, may you be given peace and grace as you watch your sweet girl learn independence! I wish so much that Zoey didn't have to use a chair like that, but I have faith that she will go far in life.....whether in her chair, or on her feet! She is quite the little lady! Love, Hugs and Prayers!!!
Watching Zoey with the power chair was both magnificent, as I could see her delight at movement, and heartwrenching as she struggled to make sense of the controls. There is so much that has been said she would never do, I have faith that given time and opportunity she can figure out a way to navigate in this great big world.
The second video filled me with a joy that will last all day, seeing Zoey so absolutely happy and unhindered at the beautiful, magical beach.
Prayers for you, that the hard times and the trials are softened and Miss Zoey once again defies all expectations!!
Zoey looks GREAT in that chair! I really really love seeing little ones her age discovering mobility, it's such a privilege to see the video so thankyou. :)
Some waffling follows, please forgive my longwindedness, it's very late here so I'm just throwing a few thoughts together:
All evidence shows that kids from a developmental-understanding level of approximately 6 months can use a (suitably adapted) powerchair successfully - Zoey is already miles above the very first steps needed to be able to use one.
She might find it useful to have a bigger and brighter 'target' on her joystick - a bright colour and something that takes up a bit more of her visual field.
If you possibly can, take her chair to school, to the park, to the shops - for some kids the 'therapy environment' really isn't all that motivating compared to all the amazing things that the big wide world has to offer - interacting with other kids, chasing the cats, carrying shopping in the supermarket...
Incidentally I saw Zoey doing what a lot of young, new powerchair users do - peering behind to see who is making it go (pushing them)!
As an adult powerchair user I can already see how much potential that chair has for Zoey - developmentally being mobile on your own (in ANY way - chair, walking, whatever) is a huge and critically important element. It changes how you interact with people, and how they interact with you. You'll probably notice people treating her more like a little girl and less like a baby. She'll be likely to initiate far more interactions with you guys, too.
If she walks, great. Don't let anybody suggest that using the chair may delay her walking - it's a myth! Doubtless sooner or later some asshat will say it, though....
When Zoey grows up, as an adult stroke survivor she might still find a chair useful sometimes, it's an incredibly powerful tool for managing your resources with a mobility impairment. Basically, you have a finite amount of energy - if walking uses it up very fast then sometimes that means you'll find that using a chair means you can actually Get Stuff Done rather than spend all your energy just getting from A to B.
One more thing...could they have had her in a more crowded environment to test drive this thing?!?!? I mean, I would have had a hard time steering around all the junk in that room!!! That was ridiculous!! Next time, tell them to do it outside or something!
I can understand your sadness at the chair. But oh the freedom it will bring! And I love that you have the beach to escape too. Some days I could really use that.
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