Sunday, March 23, 2008

Save them Horton!

Has Dr. Suess ever made you cry? We'll there's a fist time for everything. Today I took the kids to see "Horton Hears a Who."

I am obviously completely obsessed with Rett Syndrome, because this movie is about OUR GIRLS! No, I am not high on chocolate eggs....I was bawling when all the little Whos in Whoville were shouting out "We are here!" and no one in the jungle could hear them, except Horton...because of his big ears.

No one can hear our girls. That "jungle" world out there is whizzing around so fast, they don't know we exist -- how special these girls are, even if they are just a "speck" in the grand pile of problems people are facing.

We need to get louder, folks! We need a Horton to hear us and tell the world. Research on Rett Syndrome is further along than most other disorders. It is the Rosetta Stone of all neurological disorders. Our girls are saveable. There is so much hope! We need to shout it from the rooftops!

And as a back up, I plan to appeal to Horton as well. I mean, why not dream a little that a huge cartoon pachyderm might come through?

Horton! We are here! We are here!

A person is a person no matter how small..... a voice is a voice no matter how small.

With love,
Ingrid Harding

P.S. And more proof the movie was about Rett Syndrome: the mayor of Whoville had 96 DAUGHTERS and just one son! :-)

***Note: I have added a quick "resource" list on the right... please email blogATgirlpower2cureDOTorg with your additions!

Monday, March 17, 2008

Jobs and tasks

Welcome! This is the first posting to the new Girl Power 2 Cure blog! The goal of this blog is to share anything and everything that will help anyone connected to a girl with Rett Syndrome. Please share your ideas and successes! At the bottom of each post, I will add a "favorite find" or tip as well.

I have been inspired today to write about kid responsibilities by my 5-yr-old "typical"child. We made a good milestone tonight: after her bath, I went to get her PJs while she was wrapped up in her towel. When I came back, I just opened the door and set them on the toilet seat. She got dressed herself. This is HUGE. Well, it would have been Huger (word?) if Sarah (our Rett girl) did that, but still huge in the moving ahead with our littlest.

This got me to thinking about things I actually ask and let my kids do....or am I just getting from task to task. I do need help, and I have two kids who can. And I am tempted to say, plus one kid who can't, but this is what this post is about.

I ask a lot of Sarah. Be strong for therapy. Swallow yucky supplements. Please sleep through the night, etc. But these are not actual tasks like I ask the other kids. Lately, I've had my other two (ages 9 and 5) transferring laundry from washer to dryer and making their own lunch. I admit I felt silly after realizing my almost 10-year-old son couldn't even use a knife to cut an apple. Not long ago, boys could use knives for all sorts of things. So I find myself having to get creative with all my kids of all abilities.

And I have to be careful not to leave Sarah out. So, how does one "ask things" of a child with little to no body control, voice, or hand function? Here are some things we've been working on these past few months. We have had more success than I thought....and the rewards are grand. The beam of pride in her eyes says it all.

*Note: These have taken months of slow step-by-step introduction, except two things that she did tonight!

1. JOB #1: Push or pull a door open. Sarah can walk with major assistance. When we approach a door, she can now figure out if it needs to be pulled or pushed! And she can do this all by herself now. For the first two weeks, we would walk up to a door and I would praise her if she just moved her arm a little. Then, I would take her hand and help her open the door. Soon, I waited until she actually reached out enough to touch the door, then I would take her hand and help her open the door. Next, she touched the door knob, then I would help her finish. Then she pulled a little and the door would wiggle, then I would help her finish. Soon she "owned" pushing a door open. But then we encountered that the door would need to be pulled if coming from the other side. She figured that out much quicker. Now it's a piece of cake! And it's her job. We had a few times of standing there for a few minutes, going nowhere. But now she knows the drill.

2. JOB #2: Flush the toilet. Now, instead of going right to the bathroom door and opening it, we stop and she flushes the toilet. Well, almost. We are still in phase 3. Phase 1 was getting her to realize that even though we were standing by the door, there was something else to do first. If she put her hand on the doorknob, I took it off and leaned it over to the toilet handle. Soon, she was able to do a large side swipe swat which could knock off the tissue box. She thought that was funny. I wondered if she would even be able to land her little fingers under the lip of the lid, catch the handle and push. We have been working on it for three months. Step by step, inch by inch, she can now with perfect precision, reach out, place two fingers on the handle and push. She just can't push hard enough to make it flush, so I am still doing the last part for her. So, I am hoping one day soon, I will be posting a hurray, she flushed the toilet blog!

3. JOB #3: Get ready for your bath. This one is super complex, so I have picked just one task. I seat her next to the tub and place her bath toys in a box next to her and ask that she put the toys she wants to play with in the tub. We've been working on this for almost a year. She usually knocks over the box and chews the toys, that's it. If I hand her one, she will try to hold it, but it drops after a second. So I help her hand over hand put a few toys in the tub. One day a few months ago, she surprised herself by slinging one up and over and in! The next week, she used this new skill to toss one into the toilet! She laughed so hard! But tonight, I put the box in front of her, she grabbed her favorite yellow ring and calmly reached her arm up and dropped it in the water! Go Sarah! So, I, the always push forward mom, said, good job! Now take your socks off. In my head, I knew this would probably take a year or more to master, but I was determined to start right then. Well, you will love this. She started rubbing her feet on the carpet and one sock slid right off! And she giggled!!!!

So, there is your inspiration to pick a task and follow through with it. No matter what your abilities are. Sometimes having to break things down to their tiniest parts and go ever-so-slowly gives us an amazing outlook on the rest of things that seem so daunting.

Frustrated with trying to find a walker and stander, plus a way to transfer your daughter? Check this out! I love this walker called the UP-N-GO. It is not in any of the catalogs or websites as far as I know, but our new rehab specialist that we saw at the Rett Clinic at Montefiore Children's Hospital in the Bronx recommended it to us! Go to!