Rett Syndrome

I have a very young student with Rett Syndrome. Since I didn’t know anything about it, and she can’t communicate much, I did some research…

What is Rett Syndrome?

“Rett syndrome is a rare inherited disease that causes developmental and nervous system problems, mostly in girls. It’s related to autism. Babies with Rett syndrome seem to grow and develop normally at first. Between 3 months and 3 years of age, though, they stop developing and even lose some skills. Symptoms include

  • Loss of speech
  • Loss of hand movements such as grasping
  • Compulsive movements such as hand wringing
  • Balance problems
  • Breathing problems
  • Behavior problems
  • Learning problems

Rett syndrome has no cure. You can treat some of the symptoms with medicines, surgery, and physical and speech therapy. Most people with Rett syndrome live into middle age and beyond. They will usually need care throughout their lives.”

From NIH: National Institute of Child Health and Human Development

More Articles about Retts

Here is some more in-depth information.

What is Rett Syndrome? by Debbie Schilling

Rett Syndrome” by PubMed Health

Rett Syndrome” by the National Institute of Child Health & Human Development

Rett Syndrome Fact Sheet” by National Institute of Neurological Disorders and Stroke

Communicating With Children with Retts

From what I’ve learned, the most important thing to realize is that often people with Rett Syndrome are fully intelligent, just trapped inside their bodies. They want to do one thing but their body does another, and the harder they try, the harder it is to do it. So treat them intelligently, be patient, and understanding. Understand that their symptoms may vary from day to day, and that often forcing an action can make doing it even harder, since automatic movements come easier than planned. Talk to them and love them. Try to figure out how to communicate with them. And don’t give up on them!

These are some articles I found extremely helpful:

“Multi-Modal Communication Strategies for Children Who have Rett Syndrome” by Linda J. Burkhart – this is a WONDERFUL resource for information on interacting and communicating with children with Rett Syndrome. This is a must read!

“Augmentative and Alternative” by Cathy Gaines, CCC-SLP, EdS. – a great comprehensive list of communication methods to use with Rett Syndrome

Rett Syndrome Stories

Although everyone’s Rett experience is a little different, reading other people’s personal stories gives me insight into what my students might be thinking and feeling. They also help me see the big picture of a disability and give encouragement for the future! Here are some good ones.

Spirit Dances – the blog of a beautiful woman in her 20′s with Rett Syndrome who rides horses, writes music, and speaks through facilitated communication. Her story is so informative and inspiring!

Claire’s Story – the story of another girl in her 20’s with Retts, as narrated by her mother, year by year!

What to Work On in Therapeutic Riding Lessons

From my minimal experience with Retts and from reading about it, these stand out as key things you can focus on. Note that every student is different and these suggestion may not be for everyone.

  • Riding skills, but you may have to modify them depending on the student’s capabilities (such as if she can’t use her hands, use a cluck for “walk on” and “woah”)
  • Purposeful hand use – holding the reins, thought it may be very hard as Retts makes their hands unable to grip
  • Balance – core strength, staying centered while circling and through patterns
  • Movement – remember that just movement on a horse is good for them, as it works the same muscles as walking
  • Strength – upper and lower body exercises, weight bearing in two point
  • Quality of life – riding is fun and freeing!
  • Relaxing, if the student has increased muscle tone – start with walking straight to relax their muscles, don’t force it but let the horse’s muscles reduce their tone, progress from straight lines with low impulsion to circles with more impulsion, if collapsing on one side track away from that weaker side to elongate that side of the body
  • Participating, even if they can’t speak well – have them make choices through eye gazing, blinking, finger pointing, or looking at pictures
  • Steering – if they can’t hold the reins, do hand over hand, or looking with their eyes where they want to go
  • Challenge their mind as much as their body
  • Depending on the student, consider Hippotherapy along with or instead of Therapeutic Riding

With my student we’re currently working on the “walk on” aids of using her tongue to cluck and wiggling her feet, holding the reins for half an arena loop, and choosing which activity to do by looking with her eyes, all with moderate success.

This is just my very little list! What experiences have you had with Rett students? What would you recommend for lesson plans and communication?

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Note: This is not professional advice, this is a blog. I am not liable for what you do with or how you use this information. The activities explained in this blog may not be fit for every rider, riding instructor, or riding center depending on their current condition and resources. Use your best personal judgement!

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One thought on “Rett Syndrome

  1. Hi i wanted to say i found your blog extremly helpful and informative. I am a qualified riding instructor and run my own small riding centre, I have thought children with mild disabilities over the years but today for first time gave a short session to a 3 year old child with rets syndrome. She has no use of her hands, does not speak very much at all but does try, cannot sit straigh unassisted and cannot walk. I really enjoyed the session and took so much delight seeing the happiness as her face lit up when she felt the sensation of the pony walking. Her mother was delighted to see her reaction trying to communicate with the pony with the use of cluck for walk on and woah for slowing down. Thanx again for the post and would love to hear how your follow on sessions are going…

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