Sunday, November 6, 2011

More on Kendall's Communication...

The past few weeks, since Kendall's initial Augmentative and Alternative Communcation Evaluation, my mind has been racing.

Seriously, just ask her teaching team.

I wake up in the middle of the night and send e-mails. I think about it constantly. I can't help but feel so elated and hopeful for her future.

Let me back up... Kendall has been hugely frustrating to me lately. She says no to absolutely everything. Well, she says uh-uh and shakes her head.

We've initiated her low tech device at home. She's way past it. She looks at me and grits her teeth and sighs when I ask her to make a choice between two objects.

It is so very clear that she has something to say and gets seriously upset when we can't understand.

On Tuesday night, when she was awake for 3 hours in the middle of the night screaming, and shaking her head from side to side, I decided enough was enough. No more me being patient, no more me not wanting to step on toes. My job is to make sure my daughter gets what she needs when she needs it. My dream for my "special" child is no different from any other parent's. I want her to be happy, healthy, and her own person. For her to have original thought and stand strong in her convictions. And communication is the MOST IMPORTANT stepping stone toward that dream.

Our private SLP attended a seminar in PA. a few weeks ago. She invited Holly, Angie (Kendall's nurse) and I over for a movie night last Wednesday. The featured program was this documentary: (this is the trailer)


It couldn't have come at a more perfect time. After reading the book mentioned in the previous post, her AAC evaluation, and the newly initiated plan in her IEP, I finally had some clarity.  Kendall's life doesn't have to consist of a yes or no guessing game.  There is a possibility of her gaining independence, graduating from high school, going to college, and choosing a job that she wants to do. 

I'm sure some of you, especially those in education, may think I'm a little premature in this thinking. Three and a half is early for a high tech communication system.  At least it has been early.  But today kids are using cell phones, iPads, iTouches, etc... before they're two.  There wasn't any mention of the timeline for these people featured in the video.  But honestly, I don't want to know.  The truth is, we live in a time where technology is available and quite amazing.  Doors are opened for our kids that were closed before.

My goal is for Kendall to have an established communication system (after this documentary, PRC with MinSpeak is a front runner) before Kindergarten.  I know it will require a lot of work, but I know we can do it. 

Last week I went to a school district nearby to observe a Functional Vision and Learning Media Assesment.  I entered a Resouce classroom where the children were sitting at tables doing absolutely NOTHING.  Seriously, sitting there staring into space.  And this wasn't a Life Skills class.  This was a Resource class.  But either way, it was sickening.  Obviously, I wasn't in a position to judge or comment, but it really ressonated with me.  If nothing else, it made me decide that there is absolutely NO WAY IN HELL my daugher will be sitting in a classroom wasting away because some teacher doesn't think she understands or can express herself. 

Times are changing, and I fully intend on making sure Kendall benefits from those changes. 

The full documentary is actually on YouTube.  I've embedded it below.  It's a little over an hour, but so worth the time.  At 42:50, they mention that some would call these people "savants" but go on to say that the reality is that at some time, someone determined that they get a device that would enable them to be spontanious and interactive.  (something like that)  

My promise to my girl is that we find the device ASAP which will allow her to have a voice and continue her education fully mainstreamed (with support.) 

And by the way, I'm not afraid to step on any toes in the process.  Those who have the opportunity to get to know and talk to Kendall Ann will be better pople for it.  She's going to change lives.  Guaranteed.



The Henrys said...

Yes! Go and step on anyone's toes, as many times as it takes! I agree with everything you wrote here. I think it is unbelievable that they want kids to wait and I wish I had never listened to them. I was told that over and over again, and waited too long. My daughter was about six years when I started the process of getting a device. She was eight when she finally got it and I wish we had one years ago. Good luck and don't give up!

Ryntales said...

I agree go for it. We were told it was too early too despite Elllie's excellent direct selection abilities and use of letter boards. I wish I had fought harder earlier.

Zoey's mom, Heather said...

I am definitely going to watch this. Thank you for sharing it.

I am at a crossroads with Zoey as well. Just had an IEP and I looked at everyone and said, please do not view Zoey as just a child with Down syndrome. Therefore automatically putting a cognition limitation on her.Look at her as a brain injured child. A massive stroke. A child frustrated that her tiny body fails her but that beautiful brain,perfect or not, has so much to share.

Keep up the amazing job Jocelyn. You are her best advocate and the one that knows her in ways no one else does. I have no doubt that she will do all the things you dream for her, and in the process teach the world.

Tara said...

K, so I had this saved in google reader for when I had time to watch it. Silver lining to being in the hospital -- time!


I'm sharing the videos on kidz next week and giving you props. Hope that's ok, let me know if it's not. Thank you so much for being an advocate for your daughter and an inspiration to me. Love you!