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

Just Kidding

Today's gift is just kidding.

As you know we are still learning PODD....all of us.  It really is like learning another language.  And it takes time.

This evening we were having dinner and she was being a little stinker.  In between bites she was swiping the napkins off the table and trying to get me to look in one direction and then pull a fast one on me in another direction.  All while I am not only trying to feed her, but also myself.  I really did feel like an octopus at times as my hands and arms where going in too many directions.  She thought she was being quite funny.

I talked to her with her iPODD and told her "you stop".

Then she told me, "I have to tell you a secret".  To which I said, "you do".

Then she told me, "I'm just kidding"....and starting laughing!

She did this twice.

I love how she was able to have a sense of humor using her iPODD and how she knew she was being funny.  But then again, I wonder if she truly has the last laugh.  I wonder if she does have a secret, but isn't telling me...just like a typical tween!

Here is a quote for today...

If you obey all the rules, you miss all the fun- Katharine Hepburn




© copyright 2012 – All rights reserved
365 Days Gift

iPodding with Friends

Today's gift is iPodding with friends.

Every day I get "Notes and News" home from my daughter's school.  I love reading about her day...it is always a highlight of my day.

This afternoon I was so excited when I read what it said!!!!!  Here was the note...."she had speech today with T using her PODD and the children used her PODD today to say various things to her!  AC sat with head phones on while watching a video after she requested an item using her PODD"!!!

Wow...just wow!!!

I don't even know what to say.  So much excitement in one note...and that was only part of her day.  I love how she wants to use her iPODD and sees how when she requests something, she is given it.  This helps her to realize...we understand...we hear her.

I love it even more that her friends want to communicate with her using her iPODD!  This is a huge bonus to my daughter...she sees them use it and thinks...wow....they can communicate to me using my communication book....which only makes her want to use it more too!  I would love to know what they talked about.  I would have loved to have been a fly on the wall.

Just like the speech therapist from NYC said...it will take baby steps for my daughter to start communicate with her iPODD, but once she "gets" it she will take off.  She is taking baby steps indeed, but I have to say she is further along in 10 days than I thought she would be.

Wow, I can't even believe it has only been TEN DAYS since we introduced PODD to her and she is doing so well.  I can't wait to see where we will be in TEN WEEKS!!!

I am one happy mom tonight and couldn't be more proud of my daughter and her friends. The iPODD took on a new meaning to them today.  I hope they understand the importance of this iPODD....while it doesn't play music and you can't watch movies on it....it opens up a way for their friend to communicate to them with her voice.

Here is a quote for today....

I thank you for your part in my journey- Author Unknown


© copyright 2012 – All rights reserved
365 Days Gift

Inspiring Others

Today's gift is inspiring others.

Whew...what a day!   Today my daughter's team (her amazing "Anne Sullivan", her two school speech therapists and two AT therapists from the school system and I) all attended a six hour training on a new system to help her communicate with us.

It is called Pragmatic Organization Dynamic Display (PODD).  It is very popular in the Rett community and I see why!

We were very lucky to have a speech therapist from NY come to our home to train us on this new method!  We are extremely blessed to have an amazing team give up their weekend with their families to help someone in mine!

My daughter truly is inspiring...not only to me, but to all who know her and work with her.  I could tell today by the filled room how much they truly want to help her the best they can.  The energy in the room was amazing!!!

It isn't going to be easy.  It isn't going to happen overnight.  But we all know this.  Just like everything else patience and repetition is key.

However, being the amazing child she is, we all know she will take off with this new way of communicating and we can't wait to hear what she has to say!!!!

I can't wait for tomorrow's session....all of us with my daughter.  All of us learning how to use it with her.  Including her siblings!  

Instead of a quote...I would like to ask you a question...we were asked this today too....and it really hit home.

Right now, I want you to think of two things you would rather be doing than reading this blog post.  Don't say them out loud....just keep them to yourself....













Now...here are your choices of what you can do.....

Is what you were thinking one of these pictures?  No...

The choices we think my daughter wants to do is probably not what she wants either.  I can't wait to unlock her voice!!!