tag:blogger.com,1999:blog-17928203454195375312024-03-05T15:55:08.291-08:00Rett Girl BlogAnonymoushttp://www.blogger.com/profile/00006683182536287462noreply@blogger.comBlogger160125tag:blogger.com,1999:blog-1792820345419537531.post-78579216455350005822018-03-26T08:56:00.001-07:002018-03-30T11:33:11.665-07:00Spotlight Series: Rett Boys!
We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS! Read on to hear Kate and her son Colin's journey with Rett Syndrome!
What is one piece of advice you would give to a rett mom who is struggling?
Reach out to other parents of children who live with Rett Syndrome. It helps to know that you and your Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-22879682863578633822018-02-07T13:23:00.001-08:002018-02-08T08:23:04.401-08:00Spotlight Series: Rett Boys!
We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS! Read on to hear Maja and her son Tobia's journey with Rett Syndrome from Denmark!
What is one piece of advice you would give to a rett mom who is struggling?
I think we all struggle on/off because Rett does that to you. The feeling of being utterly lost Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-3614322776401243332018-01-10T18:32:00.004-08:002018-01-10T18:32:50.003-08:00Spotlight Series: Rett Boys!
We are so excited to highlight an extremely important group of people in our Rett family, our Rett BOYS. Rett Syndrome is well known as a disease that affects mainly girls, but we have some strong fighters among us and we think they and their family deserve to be heard. For the next several months we’ll be highlighting these one in a million Rett Boys, sharing their stories and how we are all Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-20002382764004975142017-11-28T20:41:00.000-08:002017-12-07T11:39:23.337-08:002017 Holiday Gift Guide!
2017 Holiday Gift Guide!
This is our 9th Annual Holiday Gift Guide!! We have so many exciting gift ideas for your special Rett child! We have covered every age, ability and BUDGET! Find direct links to all of these gifts by searching these products on RettGirl.org! Check it out, let us know what you think and ADD your ideas in the comments!
1. Beamz:Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-84296388835552043372017-11-06T15:18:00.000-08:002017-11-06T15:18:38.231-08:00Spotlight Series: Jenna
Meet Jenna, she has a contagious smile and has taught everyone around her the importance of enjoying the little things in life.
What is one piece of advice you would give to a Rett mom whose struggling?
Reach out to other Rett parents to talk with and share. It helps so much to just know you are not alone. If you have family and friends who can Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-47176305174710189612017-09-28T12:02:00.005-07:002017-09-28T12:02:50.053-07:00Spotlight Series: Kimberly
We hope you learn something different from each of our families that take the time to share their experiences into adulthood with their daughter on this Rett syndrome journey. When it comes to being non-verbal, some may think our girls or women don’t understand or they just don’t talk to them. Meet Kimberly, 32, who loves to stay active and social Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-18382113317755915712017-09-02T18:01:00.000-07:002017-09-02T18:01:55.972-07:00Spotlight Series: Tori
Rettgirl Spotlight Series
Meet Tori! Tori 19, is just a year into adulthood and this is a whole new experience for her and her family. Tori’s mom Elisa is an AMAZING advocate for Tori and as you read about Tori below, you’ll hear just how strong this family is and continues to be with new life changes ahead.
&Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-51239620601257339062017-08-15T19:16:00.005-07:002017-08-15T19:16:53.985-07:00Spotlight Series: Renee
Meet Renee who is 36 and her mom Rose. They have been on this Rett Syndrome journey for quite some time and have some great advice to share with all of us. We really appreciate the reminder of how important it is that we take care of our girls.
What is one piece of advice you would give to a Rett mom whose struggling?
Wow, that's a loaded questionUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-78253944460140686682017-07-11T08:07:00.000-07:002017-07-11T19:50:40.856-07:00Introducing our RettGirl Spotlight Series
We are excited to share a new spotlight series
of some of our beautiful young women and their families who have been on this
Rett journey for a bit. We know all our girls and women are different, but
we all have Rett in common. These incredible young ladies (and their moms)
share a little about themselves, how they fill their days and some sage advice
for living life to the Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-59097129729913524962017-06-06T14:19:00.003-07:002017-06-07T13:38:15.911-07:00Exceptional team gives tribute to a very special girl after a 12 year partnership
We have been blessed to be in a small, caring community. Tori started school on my campus at the age of 3. She was mainstreamed in a regular education classroom as much as possible. On the playground she was surrounded by kids who always wanted to help her out. When she was in kinder, she met our school's PEIMS secretary's daughter, Carly Bass. Our families had had a connection since Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-43119623678486764912017-05-08T08:34:00.000-07:002017-05-08T08:34:16.851-07:00Siblings in the Spotlight!
We love our Rett siblings! Today, we'd like to introduce you to JaeLyn and Kyla, sisters to Rett Girl, Brynlee!
What's your name? JaeLyn/Kyla
How old are you? 10/8
How old is Brynlee? 3
What grade are you in? 4th/2nd
What's your favorite subject in school? art (both)
What do you want to be when you grow up? Art teacher (both)
7. &Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-20250516055393806402017-04-06T09:24:00.000-07:002017-04-06T09:24:13.854-07:00Siblings in the Spotlight
We love our Rett siblings! Today, we'd like to introduce you to Hayden, sister to Rett Girl, Harper!
What's your name? Hayden
How old are you? 6 years old
How old is Harper? 3 years old
What grade are you in? 1st
What's your favorite subject in school?I think art and math.
What do you want to be when you grow up? I want to be a horse Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-52995822741379572232017-03-13T13:59:00.001-07:002017-03-15T12:27:32.157-07:00Everyone Deserves a Voice
SPRING VOICE DRIVE! VocaliD is excited to partner with Rettgirl.org to host a VoiceDrive [April 15 - June 15, 2017, follow us on Facebook and Twitter for more details].
The voice-to-voice interactions we share everyday are a bond as powerful as touch. Voice is intrinsically hardwired to our sense of "connectedness" and community. Our voice instantly conveys the unique and wonderful Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-1109454171001839552017-02-09T16:47:00.002-08:002017-02-09T16:47:50.907-08:00Difficult Decisions with Life Altering Benefitsby Nikki Dawson, Rett mom to Skylar
The past three years I’ve had to make some of the toughest decisions for my daughter, decisions that were truly life altering and not easy. Skylar was having seizures almost daily, had severe scoliosis, and chronic lung infections. She was on five seizure medications, had a vagal nerve stimulator (VNS), and seemed very lifeless. She had been seeingUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-68883177459939396812017-01-11T18:54:00.000-08:002017-01-11T18:54:19.040-08:00Siblings in the Spotlight!
We love our Rett siblings! Today, we'd like to introduce you to Ayden, brother to Rett Girl, Quinn!
What's your name? Ayden
How old are you? 8 years old
How old is Quinn? 4 years old
What grade are you in? 3rd
What's your favorite subject in school? That's a hard question, I would say science or math.
What do you want to be when you grow up? Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-67377446896353759542016-12-11T18:42:00.000-08:002016-12-11T18:42:39.028-08:00No More Ceilingsby: Duncan Millar, Army of Us
Duncan and crew taking on one of many challenges to raise awareness for Rett Syndrome.
There are many things about Rett syndrome we all wish we could change, but there are also some things we already can.
Somewhere along the line, somebody thought that because Rett syndrome affects the brain, it must affect intelligence. But, now we know that the intelligence Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-18034329663076465902016-11-03T12:13:00.000-07:002016-11-03T12:13:40.963-07:00First Words
by: Sarah Wilds M.S., CCC-SLP - Speech Pathologist/ Regional Consultant for Prentke Romich Company (PRC)
Those first words are everything. There’s nothing like hearing your child say
“mama” while grinning and pointing. But
when those words come and then disappear, or don’t come at all, there’s no
clear path for what happens next. As
parents, we’re not prepared for asking Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-76792159765237148042016-08-18T11:40:00.000-07:002016-08-18T11:40:49.510-07:00Rett Mom's Crafty Side Helps Daughter and Others!
Meet Shirley. She has a 15-year-old daughter Kaila who has Rett Syndrome. They live in Upstate NY with husband/father Paul and their other daughter, 7-year-old Kinley.
Shirley shares, "I have always been a crafty person. I enjoy scrapbooking, sewing, jewelry making, and many other types of crafts. I especially love making things that are Rett Syndrome related. (One Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-25344904431451255412016-07-13T12:21:00.002-07:002016-07-13T12:21:10.251-07:00Rett Siblings - They Need Inclusion TooGuest Blogger - Stephanie Millard
Rett Syndrome came into our lives about 14 years ago, when my daughter was just three and a half. We had been on a nearly two-year mission to figure out what had been taking away Allie's skills, her words, and her sweet temperament. I admit that during that time, and for a few years after, her brothers (one five years older, the other two and a half years Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1792820345419537531.post-86563148935769172652016-05-12T06:31:00.000-07:002016-05-12T06:31:35.880-07:00Teaching Math When You Can't Put Pen to PaperMy sweet Rett Girl is 11 years old. She is one super smart cookie! She is in a 4th grade general education curriculum and ROCKS it! Several years ago we made the decision to homeschool and haven't looked back since.
Annie LOVES science and history. We've been able to find some really great science lessons that hold her attention and of course she LOVES the Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-12633225339197905882016-04-14T20:51:00.000-07:002016-04-14T20:51:19.687-07:00My Child's Surgery was a Source of Inspirationby Nicole Puzzo
mom to Stella (age 6) and creator of zipOns™
You never can prepare yourself enough for watching your daughter at the age of 5 1/2 years old undergo double hip surgery, hamstring, adductor and calf lengthening as well as trigger thumb release all at one time.
Creator Nicole Puzzo with business partner Joanne DiCamillo
My name is Nicole Puzzo and my daughter Stella has Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-63568058244179081132016-02-05T09:49:00.000-08:002016-02-05T09:49:42.544-08:00Is Technology Affecting Your Rett Girl's Sleep?
by Megan Nunn
Many of our girls (like ourselves!) are highly motivated and
even calmed by devices like iPads and smart phones. I’ll never forget how
excited I was when one of Ava’s therapists opened our eyes to how helpful and
appropriate these tools can be for our girls. When nothing else motivates our almost
three-year-old, it is absolutely amazing the things she will do to watch a movie orUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-51286817418109560962016-01-15T13:52:00.001-08:002016-01-15T13:52:29.508-08:00Using Wrist and Ankle Weights to Address Physical Challenges
by Mary Jane
Baniak, DPT
The
following blog post is an excerpt from a blog by MightyTykes consulting DPT
Mary Jane Baniak. To learn more about how MightyTykes might help your Rett girl
and before beginning any exercise regiment, please consult your child’s
therapist or physician.
Using wrist
and ankle weights as an adjunct to therapy to help address a wide range of
issues and challenges inUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-36791841279281080102015-11-20T07:11:00.000-08:002015-11-20T07:26:56.667-08:007th Annual Rett Girl Holiday Gift Guide
We have so many exciting gift ideas for your special Rett Girl! In this year's Holiday Gift Guide we have tried to cover every age and ability level as well as every budget!
Bluebee Pals:
What a cool toy! Bluebee Pals are plush animals that connect to apps when paired with bluetooth and create interactive toys that "talk!" They can sing songs, read storybooks and Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1792820345419537531.post-82192728991093886792015-06-20T05:35:00.002-07:002015-06-20T05:35:38.006-07:00Looking Forward with Hope
Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
by AJ Tesler
I remember the day my daughter got diagnosed with Rett Syndrome. I remember sitting in the doctor's office and listening to her tell me about Rett SyndromeUnknownnoreply@blogger.com0