Looking for a holiday gift that will help support Rett Syndrome research? Check out this DVD! I had the privilege of viewing this movie at a screening last summer and it is wonderful. Chock full of all kinds of emotions. A beautiful glimpse into the world of a girl dealing with Rett Syndrome.
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!
http://www.nikkithedocumentary.com/
--Ingrid
Thursday, November 6, 2008
Thursday, October 16, 2008
"She just took off!"
OK -- Can you feel my huge grin strrrrrretching from ear to ear? Today is a banner day and I want to share it with you!
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.
Ingrid
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.
Ingrid
Wednesday, October 1, 2008
October List
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,
Ingrid Harding
President and Founder
Friday, September 19, 2008
To infinity....and beyond!
I never thought a quote from a Disney movie would be my latest inspiration. But I guarantee it will be yours too after you read this story!
http://www.cnn.com/2008/US/09/10/rescue.at.sea/
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.
--Ingrid
http://www.cnn.com/2008/US/09/10/rescue.at.sea/
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.
--Ingrid
Saturday, August 16, 2008
School Time!
Time to get back into the school scene! While it is nice to have a routine back in place, it is also a super anxious time for our girls as we try to get everything in place to make their time at school a success.
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!
Update
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!
Great news!
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 kelly@girlpower2cure.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!
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!
Update
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!
Great news!
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 kelly@girlpower2cure.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
The Summer Book
Summer is here! Well, about half over for those of you who start school in early Aug! Now I know you will cringe at the thought of a project -- but I hope you will find this one beneficial!
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!
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
Celebration Ideas
Wow. Mother's Day is a powerful day. The spotlight right on all of my motherliness... I faired pretty well. A pretend tea party and lots of homemade cards -- a little frisbee in the yard. It was a special day.
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!
PREPARATION:
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.
HELP:
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.
ADAPTATION:
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!
And FINALLY:
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!
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!
PREPARATION:
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.
HELP:
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.
ADAPTATION:
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!
And FINALLY:
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!
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