Monday, April 11, 2011

Things they dont tell you about Rett Syndrome That you have to Learn

This is a repost from 17 months ago. I thought it needed some revisiting for my new readers

Girls with Rett Syndrome have so many struggles. When first diagnosed parents are usually told to take them home and make them comfortable. Don't let this get you down. The genetic scientists are clueless. Sad but true.

For the parents:

She is still your daughter and the same baby you had the day before the diagnosis.

Do not take her home and give up. Through therapy she can be strong and through persistence and education you can learn to communicate with her.

You have to learn to dream new dreams for her and for yourself.

It's OK to grieve. This is going to be a long hard road. And she is going to give you more joy and love than you ever thought possible.

It's OK to let others help. You have to take breaks or you will be worthless to her.

Most important....You have to CHOOSE to be happy. Remind yourself of this in the down times.

The girls

Just because they can't talk doesn't mean they don't have anything to say.

Invest in eye gaze equipment and picture symbol software. You will find that though she may not be able to touch or say the right answer this doesn't meant she isn't looking at it.

Give her time to answer in her own way. Most thought processes take 30 seconds or more and it is very important that you don't ask her the same question over and over.

Our girls have very low muscle tone and low body awareness. Physical therapy is a must.

They quite often suffer from vertigo and equilibrium issues. This is why they pause in doorways,at pattern changes in the floor and why the seem unable to step down. A light floor to a dark floor looks like a drop to them. A 6 inch stepdown looks like 3 feet.

The process in their bodies that makes melatonin(the natural hormone that makes you tired at night) is not completed in them. Melatonin can be purchased anywhere. Check with your doctor for dosage instructions.

The screaming that occurs during regression is due to many factors. Such as Lack of sleep,confusion,frustration and gastro problems. Most suffer from some form of Acid Reflux or extreme stomach pain that can be controlled with medicine and diet.

When she stares at you and leans forward and then does it again..consider that because she can hear her thoughts in her head she thinks you can too.

For the Educators and Caregivers:

Please read all of above. Especially the last paragraph.

She has a movment disorder..not unlike ALS. She is trapped in a body that doesn't work and is weak. Her brain is in tact. She will take longer. You have to have more patience with her then you thought possible. She will show you if you let her. You have to learn her language which includes eye gaze,body language and movement.She will not perform for you. Her body does not work! Educate yourself and when you do..think of this student or patient as if this were your own child. You must imagine yourself or child waking one day and having invisible tape over their mouth. Your hands are tied behind your back. Your legs don't work. Your tummy hurts all the time and you have trouble breathing. How would you function? How would your own child? Empathy is a must.

Please please order a copy of The Rett Syndrome Handbook by Kathy Hunter....It will be one of the most helpful things you ever do.

Pathways To Learning In Rett Syndrome- A book every school with a Silent Angel should have

Please print this out and read it. I learned so much here:

Communication Strategies

Websites and support

Girlpower 2 Cure


Montefiore Rett Center

Blue Bird Circle Rett Center


Peace and Love

1 comment:

willg said...

Great, inspiring post. I've been working with a physical therapy software company, and I'm unofficially doing research so that the software can be more encompassing to all of the different needs out there.