Sunday, October 11, 2009

Things they dont tell you about Rett that you have to learn.

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 your 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 dont 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 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.

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.

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

Communication Strategies

Websites and support


Girlpower 2 Cure


Blue Bird Circle Rett Center


Peace and Love

1 comment:

Kelly said...

LOTS of great info Terri! Hugs....