Tuesday, December 30, 2008
When it comes to food that goes into my kids, especially Sarah who has Rett Syndrome, I am a complete Grinch.
I find it crazy that people were rushing to trade in trains with red paint tainted from China, but would still FEED their kids food with Red dye #40... most of the artificial food dyes are made from petroleum from CHINA.
The FDA says that 59 mg/day is safe, as opposed to the 12mg/day they said was safe a few decades ago. My question: how do they know how much I am eating in a day? How am I supposed to keep track? There are no amounts listed on the labels.
Countless studies link dyes to hyperactivity, nerve damage and other awful things. The UK is phasing out all dyes in food. The McDonald's in the UK is now using real strawberries to color their strawberry sundaes. Here in the US? We get Red #40.
My New Year's wish to all of you is to treat the colors IN our food as seriously as you worry about the colors painted ON our toys. Especially for our Rett girls who are already battling enough issues.
OK, done! I am climbing off my soapbox now.... hee hee! and truly hope you all consider nixing foods with any type of artificial dyes/flavors for 2009 and beyond.
Have a Happy and Healthy New Year!!!
Tuesday, December 23, 2008
Click here to visit the RSRT Blog!
Friday, December 19, 2008
Here is a link to a very inspiring story of a little girl with CP who is performing in the Nutcracker!
And a quick tip for wrapping gifts for someone with special needs:
Go over to your local wallpaper store and get some free samples of cute wallpaper (NOT prepasted). This makes the best wrapping paper for my daughter so she cannot bite a piece off, or get a papercut -- it is heavy enough for her to pull at and get the feeling off unwrapping a gift!
Happy Holidays to all of you from me and Sarah and everyone at Girl Power 2 Cure!!!!
Tuesday, November 11, 2008
In my last blog, I mentioned the DVD documentary called "Nikki" about a girl with Rett Syndrome. Be sure to order before Dec. 1st in order for the $5 donation to go towards research. (details in last blog entry)
More holiday gift ideas for you!
Print out these cute holiday cards from our website (www.girlpower2cure.org/holiday-card) and make a donation in the name of all of your family, school teachers/therapists and friends this year! There is a place to put the name of an honoree as well.
Also, you can save $20 on a 10-pack of Girl Power CDs! These are terrific gifts for therapists and young girls of all abilities. Spread the Girl Power this Holiday Season! Click here to listen to song samples and to order: www.girlpower2cure.org/cd.
Feeling crafty? We have some really great craft ideas that make great holiday gifts. Attach one of our holiday cards to the item so they know all about your efforts to help support Rett Syndrome research. Click here to head on over to our craft gallery: www.girlpower2cure.org/gallery.
I wish you all the blessings of the season and joy of all joys as you share good times with friends and family this year!
Thursday, November 6, 2008
Here is the info! (be sure to order by Dec. 1st in order for the donation to count!)
7A Productions and Producer Michael Knowles have created their first documentary, NIKKI: A Girl Who Has Rett Syndrome. It is now available for DVD pre-order (through Dec. 1st) for only $14.99 with free domestic shipping.
They will be donating $5 of every pre-ordered DVD to the Rett Syndrome Research Trust. Please order your copy now and spread the word!
Thursday, October 16, 2008
First, Sarah just got a new walker last week.... really her first one, because the old one just gathered dust since she hated it so much. Well, she loves this one. It is called an "Up N Go" (www.easy-walking.com). You can see Sarah using it on her YouTube page. I highly recommend it to any of you looking to help your daughter learn to walk!
Today, after school, her aide told me that she let go of Sarah's walker for a brief moment to get a book, and Sarah "just took off!" She "ran" away across the room!
So this is her very first taste of freedom. Well, once about 4 years ago, she took 10 steps in a walker, but it just wasn't so deliberate --- today Sarah new exactly what she was doing and she was beside herself!
Along that theme..... you must watch an amazing video of another little girl. Her name is Teya. She does not have Rett, but she does work her tail off to learn to walk after many years of therapy using the Cuevas Medek technique. It is truly a beautiful video to watch. Grab the tissues and go to www.teyawalks.com or www.cuevasmedek.com/teya_mov.html.
Wednesday, October 1, 2008
It's October, folks! And that means Rett Syndrome Awareness Month. Let's make it more than “awareness” and take some action.
Don't know where to start? Here is your Rett family "to do" list for October. Not a Rett family? You can still help with #3 and #4!
FIVE THINGS TO DO NOW TO HELP YOUR DAUGHTER:
1. Sign up for the Rett Syndrome Research Trust (RSRT) newsletter. The "register" link is in the "Families" section at www.rsrt.org.
2. Join Girl Power 2 Cure with a Family Membership -- it is just $5/mo and you get cards with your daughter's photo plus a web page for accepting donations in her honor, plus more! www.girlpower2cure.org/membership
3. Get your school (and other local schools) to host a Dress Up 2 Cure Day on April 1st. www.dressup2cure.org
You have to approach them ASAP to get it on the calendar... see if a group at school or a girl scout troop will take it on as a service project. All the info, plus a step-by-step school guide is at: www.dressup2cure.org/schools.
* if anyone is looking for a part-time job, you can get paid to do this! www.girlpower2cure.org/recruiter
4. Get at least 10 people (including yourself) to Sponsor a Drug in your daughter's name ASAP -- www.rsrt.org/news/
RSRT has an incredible opportunity for families to make a direct impact on this crucial research project to test 3,000 FDA-approved drugs/compounds on the Rett mice. Imagine there might be an FDA-approved drug sitting on the shelf right now that could help our girls!
*** 3,000 donations of $168 each will fund this project in its entirety - let’s get it done.
5. Forward this list to all of your Rett family contacts --- and then get started!
Thank you for doing your part in finding a cure for our girls,
President and Founder
Friday, September 19, 2008
Go ahead and read it first, then come back to read more here.....
Amazing, isn't it? The love this man has for his autistic son is so beautiful. The sheer determination of the pair is beyond belief. As I read the story, I felt like I was reading an analogy of my life with Sarah and Rett Syndrome.
Getting swept out to a place I couldn't get back from. Feeling in the dark, yet empowered by the spirit inside my little girl. Feeling the pain. Feeling like I wanted to give up. Calling out, but to have no response. Wishing on the stars. Surviving the night by sheer will. The doubt. Then the triumph that Sarah is surviving day by day through bravery, patience, and love.
If you feel "swept away" --- call out "To infinity!" ---- "And beyond!"
They battled for 14 hours. You may have already battled 14 years or more. Keep paddling. Take moments to float and look at the stars. And keeping reaching for the "beyond."
Our girls will be survivors one day because of it.
Saturday, August 16, 2008
Here are some things to try:
(the info mentioned here is all available for your use at www.girlpower2cure.org/resources)
Create a school guide
Visit the link above to view my daughter's guide. Her teachers and therapists refer to it more than I ever imagined. It is all about how Rett Syndrome and Sarah's needs in the school setting.
Send home a letter to parents
I had to jump through bureaucratic hoops to get this OK'd, but it was really worth it. It is just a simple letter explaining Rett Syndrome and Sarah, plus our family contact info for questions. This is how Sarah made her very best friend, Mara... her mom read the letter to her and Mara sent Sarah an email. They have had a special bond ever since.
Present to the other children (up to grade 2)
There are two great things that helped set a great tone with Sarah's class. First, I read "It's Not Easy Being Big" (a Sesame Street book). It is all about how Big Bird cannot play many of the games with the other kids because he is so big. Then the book goes on to show how they "adapt" their games to help Big Bird out. Like tying two jump ropes together to make it big enough for him. I went on to explain how Sarah's helpers would be coming up with ways to "adapt" things for Sarah...and that they could come up with ideas too! Throughout the entire school year, those kids were always trying to figure out how to include Sarah.
Second: I played a simple game with the kids. I spoke about how Sarah can hear and understand, but cannot speak. Then I asked them each their names...BUT they were not allowed to say them aloud. I remarked, "see, you know your name even though you didn't say it out loud!" They thought that was pretty cool. Then I brought in a color board with six colored squares made from felt (3 on top and 3 on bottom). I talked about eye communication, then had them each tell me their favorite color with their eyes. It was really fun to see them get excited when I knew their answer just by looking at where they looked.
These ideas are so simple, yet incredibly powerful. I wish you all the best of luck as the new years gets started!
An update on my last entry about creating a "Summer Book." Well, I have to confess even I did not follow through with my own suggestions. But we did have a great summer. Funny, but Sarah helped me out without my even knowing it! On my list was to grow something I could eat -- I did not -- but Sarah grew parsley, basil, and tomatoes in her summer school garden!
On behalf of Girl Power 2 Cure, it is with great pleasure that I announce our newest team member! Kelly Butler, a Rett mom from Indiana, is our new Program Director. She will be helping us take Girl Power 2 Cure to new heights! Be sure to send her an email at firstname.lastname@example.org if you would like to take advantage of new programs that we are putting together. We will have some cool new opportunities for you to check out in the next week or so!
Tuesday, July 8, 2008
Day to day with Rett Syndrome usually evolves around our daughter's comfort, therapy, trying to communicate, reading, and lots of hugs....but, there are some important things that may go missing -- learning about things like planning, anticipation, memory recall, and creativity.
Here is a project that brings all of these things together for a fun summer-long activity! (or anytime, really!)
THE SUMMER BOOK
Here is what to do:
TASK ONE (planning): Get the whole family together and each come up with 3 things they want to do/accomplish over the summer. Write down on a big sheet of paper so everyone can see.
Ways to get your daughter involved:
If she is good with her eyes/touch to make choices: give her some choices using your voice or a photo off the internet or cut out of a magazine. Or if someone has more than three things, have her help them decide which to cut.
If you have a voice output switch: when you are done with the lists, read them into the switch for her to "recap" for the group what the final results are.
Our family's results:
Mom wants to: grow something she can eat, paint a watercolor picture, take a canoe trip
Dad wants to: visit his mom and dad, take a trip to Boston, visit the cranberry bogs
Pierce (big brother, 10) wants to: learn to body surf better, start to learn the guitar, visit the zoo
Gretchen (little sister, 5) wants to: go to the beach, see Grandma and Grandpa, play miniature golf
Sarah (with Rett, 7) wants to: go in a sailboat, ride in a train, visit the aquarium
TASK TWO (anticipation): when a time is approaching where some of the things on your list are feasible, write each one on a card (add a photo representation to help!)
Let her pick what your family/ or a family member will do that day! After she picks you can all talk about how to prepare for the day. You can make a picture list of things to bring and even have her help you 'check off' the list the day you are getting ready.... ie, do we have this? "yes or no?"
TASK THREE (memory recall): Be sure to take pictures of your day!
Ways to get your daughter involved:
Invite some friends or family over for her to tell all about the family's day and share the photos... or have her tell all about it at school show and tell. Read descriptions of each photo into a voice output switch or make a power point presentation that she can advance from slide to slide herself.
TASK FOUR (creation): Put all of your photos into a book! Keep it simple with some captions or go hog wild with the whole scrapbooking gig. Since I know I never have time for that, I cheat and upload photos to an online bookmaker site like picaboo.com or mypublisher.com. When it comes in the mail, the kids can color on the pages/add stickers and you can write the captions in yourself to make it more personal!
Now you have a book you can read over and over with your daughter, and she will feel such a big part of the whole process!
Ways to get your daughter involved:
Record messages on her voice output switch to retell a story from each page of the book. She can then hit the switch as you turn the pages. She can share with friends, relatives, teachers, and neighbors all about her summer!
We take these kinds of mental skills for granted. Even if you do not accomplish this project, look for little ways during the day to have your daughter exposed to planning, aniticipation, memory recall, and the art of creation. Plan a meal a few days in advance and do the shopping together, make up a story together using magazine photos and retell to the family after dinner, etc.
Even simpler, just remember to talk to your daughter about the future and the past. It will help you add in more conversation topics and make her connection to what is going on around her even stronger.
Have a great time!
Monday, May 12, 2008
Special days are tough, too, though... sort of milestones... also days when Sarah's daily struggles are illuminated as she cannot really join in on the fun. And her pain seems to shout out even louder.
So, I have been thinking about the months to come --- picnics, birthday parties, 4th of July, weddings, baby showers, etc. What are some ways to help make these days better for her?
These things are a little "all over the map" -- but I want to share them with you!
Try a trial run. If you know you have a picnic event or other event, take your daughter there the day before just to walk around and talk about what the next day will be like. Tell her about who you will see, what will happen, where you will eat, etc. Anything to give her time to know you have it all planned out, so her anxiety levels may be less on that day.
Twice now I have brought a volunteer helper with us to an event. She is 14 years old. Having that extra set of hands is amazing. Even if it is just to stand with Sarah in her wheelchair while I take our littlest to the bathroom. The less juggling I have to do, the less stress from me that Sarah will pick up on.
If you are having a birthday party for your daughter or attending another specials needs party, consider wrapping your gift in vinyl wall paper (available as free samples at any wall paper store)! Not prepasted though -- just plain. This way Sarah was able to unwrap a present without papercuts or getting pieces bitten off into her mouth!
Why not help get the word out about Rett Syndrome with a special contribution page on the Girl Power 2 Cure website! When my friend Jen got married last summer, she asked if I could do this for her wedding registry --- of course! We have also set up pages for baby showers, graduations, and birthday parties. Here is the link to Jen's page: www.girlpower2cure.org/Reid-Andrade.
I can put up photos, a custom message, most anything that will make the page extra special.
All of the funds raised go directly to our 2008 Research Fund for Dr. Adrian Bird.
Hope you all had a great Mother's Day and will have many great outings with your daughters this summer!
Sunday, March 23, 2008
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.
***Note: I have added a quick "resource" list on the right... please email blogATgirlpower2cureDOTorg with your additions!
Monday, March 17, 2008
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 http://www.easy-walking.com/!