I have been receiving lots of questions from teachers, parents, caregivers, friends and family of females with Rett Syndrome all over the world. I have heard from Sweden, Italy, Australia and the UK, so I decided to answer some of them on this page. They may be of help to you. We are going to summarize the questions so no names are here, just my answers.
So, here we go….
From a Mom in Sweden:
I am so happy i found your blog. I live in Sweden an my daughter who has rett syndrome. She is 15 now. I have always said to others that she understand so much more than they think but not many believe me. You lifted my heart and spirit by telling the world you du NOT funktion in an early infant level!
I will tell my girl about you and i know she will be happy to hear your words! You are a brave girl and will, i am sure, help many many silent people around the world and hopefully change the way others think silent is the same as ignorant. Take care and I hope you will find caregivers who will see what a wonderful and precious person you are!
My response: “I am so glad to hear from you. I want to tell you that I am amazed at the people that are responding to my blog. I think that those of us that are silent need to have people that believe in us even when all the evidence says we are not capable. It would change our lives. I know your daughter is capable. The reason I know that is that most girls that I ‘ve met with Rett have great intellect but are unable to share it. I loved that you responded. Keep checking back!”
Questions about how I communicate:
My daughter, _____, has RS. She is nearly 5. I am interested as to how you type. She has a touch screen computer, but she struggles to make choices on it as she uses her thumb to press, and her whole hand ends up touching the screen – she can’t be precise. She is starting school in September – at our local mainstream school- and I am considering buying Intellikeys so I can create her own keyboard – but I would only be able to put a few letters on it as she essentially uses her whole hand to make her choice. I would be grateful for your advice.
My response:
I am so glad for____ that you are her mom.
I had an Intellikeys when I was younger. I think it was too limiting for me. I know there are females with rs who are able to be more precise than others. I am not able to type without facilitation because I am not able to hold the keys for the right amount of pressure and time. It was frustrating for me when I was expected to use a keyboard independently. My hand curls up too, but if someone holds my right hand and helps me isolate my pointer finger, i can type very fast. It doesn’t happen with everyone who tries, but for those who are persistent, I am eventually able to express myself freely. If _____knows you believe in her she will try everything she can to can to communicate with you.
I think girls with rs are often labled as having low intellect because we are expected to operate independently. It is usually not possible for us, because our hands don’t listen to our brains very well.
Give _____ a hug from me. I hug by bumping people with my head.
Karly
My response to another Mom about FC:
This may be surprising to you, but I am communicating using facilitated communication. (FC) I have Rett syndrome and I am 22 years old. I had no way to communicate before I was nine years old. If you are interested in your daughter using FC, I would encourage you to go to this website. www.williamstillman.com There is a lot of information there. Bill is my friend and he has Asperger’s. If you want to know more about me, go to my blog at www.spiritdances.wordpress.com I just started it two weeks ago and it has been amazing to me that people are interested in what I have to say. Please don’t let your daughter live in silence. With FC, I have become a happier, healthier, involved person. I’m not feeling well today so I don’t have a lot of energy, but please don’t worry about costs for FC. I use an old detached computer keyboard that was given to me. You can use a paper with a keyboard printed on it. Don’t worry about what others think of FC. Try it for your daughter. It has given me a life.
Question from a grandmother about what to get her six year old granddaughter who has Rett Syndrome for her birthday:
I have a question about my six year old granddaughter. She is so sweet and beautiful. She said a few words when she was around two, but none since then, and never in front of her parents. Also, she has almost no muscle control – and it’s getting worse. I’m at a loss as to what to get for her birthday. Do you know what I can get her? I want to make her happy. We love each other so much. She also bumps heads. I’m glad to know it’s a hug.
My Response:
I remember when I was six. I was scared about a lot of things. It was at that time that teachers were deciding what I was capable of doing. I was so much more intelligent than they knew. If you give your grandaughter gifts that are for someone her age she will likely not be able to handle them like someone her age. It doesn’t mean she’s not intelligent. I still have things I chew on because I can’t stop myself from chewing. I have a miss Piggy in my bed for when I wake up and need to chew, and I wear bandanas all day long so my clothes stay dry and i can chew on them. I think getting her something that is inspiring to her like a movie for her age and something to fiddle with, will give her mind and her hands something to do. I fiddle a lot and it calms me. I like shiny objects.
From a Mom in Oxford England:
I have a 21 year old daughter who has Rett Syndrome. We found out about Facilitated Communication when she was 5 and you will know what difference it made to our lives. I kept saying that I couldn’t believe she was the only intelligent girl with Rett’s and I am delighted to hear that you are broadcasting that loud and clear to the world!
I am intrigued by the fluent and grammatically correct and wordy style to your writing. Have you always written that way? My daughter’s writing is not nearly so fluent and the way she uses language is distinctive. She likes complex, old fashioned words and it takes so much effort to type that she is very concise and what comes out is poetry rather than prose. Words come out in the wrong order and it doesn’t always make sense. We have to work over and over on each sentence to clarify her meaning and to get it to end up saying exactly what she wants in the way she wants.
Would you be able to tell us how it is for you?
My Response:How wonderful to hear of another Rett girl who uses FC. I have a friend who lives near me with Rett who is also able to use FC. She isvery intelligent and we have great visits when we are able to see each other.
At one time I used to use words that were more complicated than I do now. As I listen to people I have learned how to imitate conversations that are spoken. I also have limited vision but I can see up close. I am so glad you wrote to me. It is frustrating to me to have people believe that girls with Rett have low intellect.
Karly
Your blog has reached out and touched us here in England.
I have been receiving lots of questions from teachers, parents, caregivers, friends and family of females with Rett Syndrome all over the world. I have heard from Sweden, Italy, Australia and the UK, so I decided to answer some of them on this page. They may be of help to you. We are going to summarize the questions so no names are here, just my answers.
norma boyd said,
November 30, 2008 @ 12:31 pm
Dear Karly, I am so happy to be reading all you have written…I always thought that you were very intelligent. I remember so well when you would come and visit with your family how you always turned the little books right side up….I felt so good about that…I would purposely give them to you wrong and watch you and sure enough you had them right side up….this was when you were really little and I knew you were to young to be reading but you sure were learning weren’t you…love you, Gram Norma in ND
Carol Araujo said,
January 21, 2009 @ 10:18 am
Hi Karley,
My 44 year old daughter Tammy has Rett Syndrome and has been using Facilitated Comunication for 16 years now. I was so excited when I found your website, finally someone is bringing Rett girls together who are able to communicate. THANK YOU from the bottom of my heart.
Today I read out loud to Tammy all your thoughts on “My Rett Body”
It brought back all our frustrations; the misdiagnosis, the crying spells, the screaming spells, the Doctor’s and teachers discouraging words, the panic attacks and anxiety, the allergies, not getting her hands to work,
people not believing she was capable of communicating, being attracted to sparkly lights, and Tammy’s special love for music and animals.
I showed Tammy your website pictures and then asked her to respond
Tammy typed: “Sa I am really impressed. I need a frend” Then she was c ompletely overwhelmed by everything and couldn’t continue.
We live in Rhode Island, Tammy moved into a group home with 2 women her age last year, and she is attending an Adult Day Prom 4 days a week. This new small group home and day program with the elderly has worked the best for Tammy. We have tried other group homes and workshops but Tammy was not happy.
My husband and I are visiting Florida for the winter. Tammy arrived with a worker from the group home, and will be leaving on Saturday. I will try to get her to communicate again before she leaves.
God bless you and your family.
Sincerely,
Carol Araujo
carol araujo said,
January 24, 2009 @ 8:11 am
Hi Karly,
I sat down with Tammy yesterday and asked her to send you an e mail.
Tammy was really impressed with your writings about your early years and this is how she responded:
Dear Karly, Subject: Earlier Tasks
Each Day I live I remember crass deaf ears on my life. Each dart thrown at me sailed me into troubled waters. Sad I easily slip away into my own world. Each day I call God to help me.
Dead was my life with no one to hear me. Each bear necessity masked by no assurance that I could get my body to respond. Each fear terrified me. Each easy task was years away from me being able to make my body work. Each fear let me get closer to God.
Tammy could not continue, her early years have been very hard for her to communicate.
Keep in touch and we can share our experiences.
Love, Carol and Tammy
Subbarao said,
February 17, 2009 @ 9:43 pm
Hi karly,
It was a delight to read your blog. Very inspirational.My daughter is 6 now and like you have mentioned ,we strongly think she has immense potential to read and communicate and my wife works hard everyday to impress upon this fact to all therapists involved in our daughter’s care. We just bought a touch screen for our daughter and working on the keyboard. Do you have any suggestions for beginner’s like my daughter and share some of your earlier stumbling blocks you have encountered in communication including reading and typing.
your story again is a great inspirational one for all parents and therapists involved in the care of our girls.
keep doing the great job
Subbarao
queenie said,
September 30, 2009 @ 1:44 am
Hello Karly,
I am from the southern part of the philippines. i am so happy when i found your blog, i was so surprised and blessed by it. I have a beautiful daughter, Katrina Julie, who we actually call kelly. She was diagnose with retts when she was 2 and now she is turning 6 by december. You gave me hope that she can learn a lot of things. Our family really beleives she is more intelligent than what the doctors said. That she understands a lot on what is going on around her. you inspired me and i thank God for that. you are indeed a light to us. thank you.
queenie
Lora Barrick-Ramirez said,
October 2, 2009 @ 9:23 am
Hi Karly,
First of all I want to tell you that you inspire me and my daughter Brenna. My 14 year old daughter Brenna was diagnosed with Rett’s on 6/11/09. Since then I have been on a mission to heighten awareness. Please take a look at my web-site and let me know if you have any ideas to share with me or if you would like to help. Myself along with 7 other Rett mom’s are working on this campaign, I would be happy for you to join our team. Take a look at the web-site and let me know if this may be something you would be interested in. Thanks so much and thanks for being the incredible person you are to share your gift that gives hope to all the sweet Silent Angels everywhere.
Lora Barrick-Ramirez Tx
http://www.rettsyndromeawareness.com
Jen Dalton said,
November 12, 2009 @ 6:42 am
Dear Karly,
I have been “quietly” reading your blog for some time now. My daughter Emma is 3 1/2 and was diagnosed with Rett in September 2008. I am on the Mother’s Advisory Board of Girl Power 2 cure with Ingrid.
When I read your words I can honestly say I understand. Emma is so smart and yet, we live in a world where people can be so ignorant. They don’t understand that she is trapped in a body that doesn’t work the way she wants it to. She understands everything going on around her and has an amazing sense of humor. Most of the time people prefer to see the things she is unable to do at this time. Notice I didn’t say “can’t”. We don’t believe in the word can’t.
In October we hosted a “Rockin For Rett” benefit concert and auction. We raised a bunch of money to help find our cure. We KNOW that cure is out there and please know we are going to get it. Rett Families are amazing.. I know you know that!
Please continue your amazing work. Thank you for helping everyone understand Rett Syndrome.
Jen Dalton
Mom to Emma 3, RTT