Monday, March 14, 2011

{A Girl And Her Pony}


There are some days where the intensity of Angela's needs are so overwhelming.  If I said the opposite I would be telling a rather huge lie.  That fact that I love this beautiful little girl beyond words really doesn't change that fact that her needs are great.  Angela has amazing potential.  Adam and I have been blown away by the things that we see come out of her little mind.  The biggest issue with Angela's care is that she needs to be engaged at all times.  She needs to be touched and talked to almost every second of the day when not sleeping.  If she is not being engaged she reverts to self-stimmulating behavior that causes the sweet Angela we know and love to temporary go away.

I know without a shadow of doubt that we will be able to help her find a way to stop these behaviors and find a way for her to bring this wonderful world to her in a life enriching way.  With that said -- we have a long road ahead.  We are ready -- but today I'm a little tired.


Then I look at these photos.  This is Angela's new gait trainer.  Just a few months ago there would be no way she would have been able to tolerate bearing weight on her little legs, not to mention holding herself up so big and strong.  This girl is amazing.  She is so smart and is catching on to so many new skills faster than we can teach them.  



This one photo is of Angela playing so big with her arms.  Do you realize how difficult this is for a child with CP and blindness -- not to mention she is upright in the gait trainer balancing her body weight.  This leave me speechless and is such an amazing reminder of just how far she has come.  I found these great bells that I attached to each of her ankles at the gift shop in the hospital.  Due to her visual impairment, the bells help her to see her feet by simply hearing them.  They also provide some great fun motivation for those little legs to get moving.  


We will begin the process of purchasing a KidWalk this week.  The Pony is great but I've heard such amazing reviews on the KidWalk and can't wait for Angela to have one.  The Pony we have was given to us by a friend who also received it as a hand me down.  Some of the adjustments are no longer adjustable so we are hoping the process will not be too long.  We are still waiting on her wheelchair to come in as well -- nothing ever happens fast. 


We are taking one day at a time.  Usually by this time each day I'm tired beyond tired, but each morning when I hold this sweet little one in my arms, giving her my good morning kisses and hugs the tiredness of previous days just melts away.  She is so worth everything.  

Really worth everything.


Shelly said...

Aw, your love never ceases to amaze me! I hope you find a good way to redirect her stimming! Have you talked to her OT for ideas? I'm sure you have, as an OT I love giving ideas for redirection :)

Missy said...

It is tiring and hardwork, the constant therapy merry-go-round, waiting for equipment and funding.
However it is so worth every bit when you see your child achieve and master skills. I see every achievement of a goal or a milestone as a momentous occassion. My child has taught me to value every little goal she reaches, gain she makes. I think of my life before disability and I dont think I would have cherished moments such as these as much as I do now.
So tiring yes but worth it, so definitely so!

Brittney said...

She is a beautiful little girl and is so lucky to have joined our family! The bells you put on her ankles are ingenious. :)

Phyllis said...

love this post and the pictures! She is really getting around!

jocalyn said...

oh, girl...i feel your pain! my sweet kendall has to be entertained every minute too! (that's why i love that she has an older brother to help out!)

we have a kid walk too, but kendall doesn't really pick up her feet much in it. i'm not a huge fan of it because she tends to just hang there.

some of the disney ipad story apps allow you to voice over the story. that helped kendall a lot. hearing familiar voices reading a story engages her and enables me to at least go to the bathroom or take a shower if i'm lucky!

we also started using a timer and leaving her alone. then when the timer goes off, we come back. sometimes she'll cry it out, other times she's pulling her hair and arching herself into a sweat. but she's getting better than she was! we can leave for by herself for 3 minutes now :)

you guys are doing an awesome job. everyone has those days. as she gets older, i've been told it gets better.

Karen Owens said...

@Jocalyn -- does Kendall stimm at all? This is why we can't leave her alone -- she goes into this deep place and it's hard to get her back. Also her CVI plays a big part in this as well -- she sees a light and girlfriend goes into la la land.

Kristina said...

This is a very hopeful post. Just what I needed to see today! I am amazed at how much strength Angela has gained in such a short period of time. She really is blossoming with all the love and support she has.

Today I am feeling overwhelmed with how much work we have ahead of us. We had an IEP meeting to update Emma's goals and they all seem a bit overwhelming. Focusing on all the progress to date and potential over her lifetime makes it a bit easier to digest and this post put me back into that mindset.

Thanks for sharing!

JayCee said...

Cool post!
(Keep up the good work, or should I say God-work!)

jocalyn said...

yes..kendall definitely does a lot of stimming. her hair pulling, biting, and teeth grinding are really the only things that could inflict injury on her though. she licks, pats and scratches pretty much all the time.
kendall has cvi too, but once her seizures stopped her vision improved tremendously.
she zones out all the time, but honestly i've never really thought of that as stimming?!

Just Another Ordinary Miracle said...

She reminds me so much of Ivey. Ivey even has the pony. that curly hair. They even look to be similar in size. But sounds alot like Ivey and how we have to engage her all the time. It can be exhausting. Signs have made all the difference and tactile cues and prompts. Give her communication skills - expressive. It'll make a huge impact with the self-stim. Don't know where you are on the spectrum yet, but I have tons of suggestions for engaging to avoid self-stim. Let me know and I'll tutor :) I've got five years of expertise!! in house, 24/7!
You are doing awesome sweet friend and the family sounds so happy. Great things are in store for you.

Karen Owens said...

@ Jocalyn & @ Gwen If you all ever have time I would love to hear how you redirect and stop the stimming. For Angela she does the same thing all the time. She grabs her hands and they flicks her eyes at the light, looks just like nystagmus only she twitches her muscles as well. The difficult that I have it that she can't really use her hands to play so unless I'm right there to move her and engage her she reverts to this behavior.

I know some parent allow their children to continue with these behaviours but for us we see a bright little girl with lots of personality, when she does this behavior it's like she just leaves us -- there is no sign of the "real" Angela.

I knjow it's gonna take lots of time, but I would love to hear some techniques other parents use.