Tuesday, July 9, 2013

Making Choices....One at a Time

Today's gift is making choices....one at a time.

It is really hard to wait for something when you really want it, isn't it?  I find this to be true with many things when it comes to my daughter.

First and foremost, I want a cure.  End of story.

That was the obvious one.   Looking back on her 6 1/2 years of living with Rett Syndrome (she is 11 1/2 and has been dx with Rett since 5) there are many "things" I wanted to happen for her way before they actually did.

I wanted her to be able to go to bed much easier and without us having to drive her around (took at least 2 years for the driving to stop and 5 1/2 for her sleep to improve).

I wanted her to be able to feed herself...with a fork (took 5 years) and drink from a cup which she holds on her own (took 3 years) and get a cup of water herself from the faucet (took 2 years).

I wanted her to be able to not scream (took 2 years) and for her behaviors to decrease significantly (took 5 years).

I wanted her to be able to swim...the best she could (took 6 1/2 years).

I wanted her to be able to navigate an iPad (or some sort of age appropriate technology) and this took 2 years.

There are plenty of things I wish she could do...just like her siblings or peers...run and play (alone with her friends), ride a bike, have sleepovers (AT her friends house), go to "typical" camp and play "typical" sports, talk back to me, etc....the list really is endless.

The one thing I really want is for her to talk to me.  Tell me about herself.  And we are still working on it!

As you know from previous posts we are working on her iPODD.  It takes time.  It doesn't happen overnight.  This is easier said, then done.   I wanted her to take to this new way of communicating immediately just like you would learn to brush our teeth.  But, asking this of her is not realistic or fair.   It is the equivalent of someone asking you to learn a foreign language and learn it immediately.  Not likely.

The speech therapist who taught us PODD said it could take 6 months to one year....for her to show consistent interest in her PODD book.   Repetition is key.  I know this.   I know this works with everything else we do with her, so why would this be any different?  It is not.

While she may not show interest every day, or every other day, but when she does she is spot on. Today, she expresses to her "Anne Sullivan" that she wanted to read a book...using her PODD.  Not only did she request it, but then went and picked up the book she wanted her to read!  Talk about communicating!

While the "gift" wasn't directly with me, it is still a huge gift.  It shows her using her iPODD the way she should.  It was natural and not forced!  It showed she made a choice....it was her choice and her's alone.

I know this road with PODD is a curvy and bumpy ride between learning all the symbols and learning the layout of the book.  It is hard for me too to learn all the pages.   I don't know why I expected it to happen overnight...maybe it is just because I want to know so much of what is inside her head...like 11 1/2 years worth!

Even though we don't have days like today every day or every week that is okay.  What is important is that she hears and sees us using it while talking to her.  Our repetition is going to help her want to use it too and before we know it....just like everything she has learned through practice over and over again, it will click.  And then she will be "talking" up a storm.

Until that day, I will listen to her "talk" through PODD on the occasions she wishes to "speak" through PODD.

Here is a quote for today...

Never let the things you want, make you forget the things you have- Author Unknown

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