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What is Rett Syndrome?


Rett Syndrome (sometimes also called Rett's Disorder) is a disorder in the brain that causes mental and physical problems such as with talking and motor skills, e.g., walking, crawling. Children with this disorder seem to develop normally until about 6-18 months old. This disorder mainly affects girls. The cases of boys having Rett Syndrome are very rare.

The first symptom is usually hypotonia (low muscle tone where the child's muscles are floppy). Children may not be able to control the use of hands and often have repeating hand movements that they can't stop. Your child may stop talking and lose the speech already learned. Other early warning signs are problems with crawling, walking, growth, looking people in the eye, sleep problems, seizures, breathing and chewing difficulties. Symptoms can be very sudden. In the beginning stages, Rett Syndrome can seem very similar to autism.

Remember, every child with Rett Syndrome is different. Your child will have her own particular strengths and areas of growth. With your encouragement, love and support, your child will find it much easier to have the fullest, happiest and most independent life possible.


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What are some common signs of Rett Syndrome?


Some things you may see in your child.
  • Does not make conversation.
  • Has a problem with learning and reasoning (intelligence).
  • Cannot control the use of hands.
  • Repeats the same hand gestures including hand washing, hand wringing and hand clasping, and puts her hands in the mouth often.
  • Head doesn't seem to grow as fast as the rest of the body.
  • Your child shakes -- in the legs, the body or both -- and more often when your child is upset or bothered.
  • Walks funny -- either stiffly, on tiptoes or with feet spread wide apart.
The following signs are very rare; only some children with Rett Syndrome will show these symptoms:
  • Problems breathing; may gulp air, causing the stomach to swell.
  • Seizures (shaking or convulsing), which usually can be controlled with medication.
  • May have scoliosis (curved spine).
  • Grinds one's teeth.
  • Problems sleeping such as sleep apnea (stops breathing or seems to hold her breath while sleeping) or not sleeping during normal hours.
Excerpt from the International Rett Syndrome Association



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What can I do to help my child?


You have made an important first step by reading more information on Rett Syndrome. You also can talk with other parents who have children with Rett Syndrome. They have gone through what you are going through and perhaps can help. You also can get great help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children, the better the results for the child and family.


Below are some checklists to help your child. Remember, you are not alone.

CHECKLISTS OF THINGS I CAN DO TO HELP MY CHILD




THINGS I CAN DO TO HELP MY CHILD WITH RETT SYNDROME

Getting Started

IN THE STATE OF FLORIDA:
 Get my child evaluated (tested):

If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps  program for free. Your child may be eligible for free services. You can contact one of the centers closest to your home.


If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he or she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS/South) program. They also provide testing for special education programs. (If your child is already in the Miami-Dade Public School system, your child must be tested through the school.)



Contact Children's Medical Services (CMS): CMS, with local offices, sometimes will refer children to medical centers that work with CMS. Services are provided to help care for children with disabilities, special needs or major medical conditions. These services range from early intervention programs such as Early Steps to ones for a specific medical condition.



Work with my child's service providers: A service provider is anyone who works with you and your child, such as a pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. Remember you know more about your child than anyone else. You are the main influence in your child's life. Here are some tips for speaking with service providers:
  • Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.


  • If you think your child needs something in particular (like a speech evaluation), keep asking until you get it or until you understand why it is not needed.


  • Work with professionals in early intervention or in your school to write your child's IFSP or IEP reflecting your child's needs and abilities. Be sure it includes such related services such as speech-language pathology, physical therapy and occupational therapy if your child needs these. Don't forget about assistive technology.
Get more information: Visit more websites. Read a book. Watch a video on Rett Syndrome. Include your child and family. Talk with another parent. Parent to Parent of Miami  can help you meet other parents and get services.

Contact UM/NSU CARD  for services for my child: University of Miami/Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD) provides services to families and children with autism spectrum disorders, including Rett Syndrome, and related disabilities in Miami-Dade, Broward and Monroe counties.

Main Office
5665 Ponce de Leon Blvd.
P.O. Box 248768
Coral Gables, Fla. 33124-0725
1-800-9-AUTISM
(305) 284-6563
Fax (305) 284-6555
Website: http://www.umcard.org/index.htm





 Help my child's physical movements and development: Take part in family fun, recreation activities, play and all parts of daily life. Having Rett Syndrome doesn't mean your child should miss out. You can encourage your child to learn and develop better movement and control of muscles at home and in the community. Many summer and outdoor activities are available to you and your child. (For a list of activities and programs see below.)

Dial 211 to find recreation areas and programs

 Help my child's speech and language skills: Talk with your child: Just talking to your child can encourage speech and language skills. Talk with your child. For example, while shopping in the grocery store name, name each item as you put it in the grocery cart. Talk about color and shape. Your child will learn how to talk from listening to you.

If your child tries to speak with you, give plenty of time to answer. He or she may have lots to say, but it may take longer.

Play with your child: Try to spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but often helps. Music tapes to which a child can sing along also are very effective.

Read with your child and point to objects in the pictures to develop language.

Ask your child's speech and language therapist what you can do at home. Have your child's speech and language skills evaluated (tested). Don't worry if your child is too young to talk. Speech and language therapists see very young children, even infants. It's never too early to get a communication (language) assessment (test).


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How can I deal with all of this?


First of all you need to take care of yourself! Having a child with a disability is hard work. While there are times of joy and celebration, there are times of heartbreak, too. It is easy to get overwhelmed.

You can make a difference in your child's life by working with your child and therapists, doctors and teachers. But before you can take care of anyone else you must be kind to yourself. Taking care of yourself is not selfish, but instead necessary. You can't help your child if you are overworked and overstressed.

Figure out how to take care of your own needs. The next time friends or family say, "What can I do to help?" let them babysit or lend a hand so you can have some time to yourself. Some things you can do to "recharge your batteries":
  • Do something that makes you feel happy. It could be going out with a loved one or friends, taking a long bath or a creative project.
  • Exercise is vital for your mind, body and spirit -- long walks, lifting weights, bike riding or an aerobics class. Make sure it is fun.
  • Talk with other parents of children with Rett Syndrome. Parent to Parent of Miami  can help with practical tips, cheer you up, and be a source of strength.
  • Stay hopeful. Many parents find the following poem, "Welcome to Holland," to be a comfort. Click here to read Welcome to Holland.

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Do many children have Rett Syndrome?


Rett Syndrome is quite rare, usually happening to about one child of 10,000 females. It can happen in any ethnic or racial group around the world. The risk of having a second child with Rett Syndrome is less than 1 percent.

RSRF, 2004



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What does this mean about intelligence and learning?


By definition, having Rett Syndrome doesn't tell us anything about a child's ability to learn and reason (intelligence). Having Rett Syndrome does not mean that your child cannot learn the same things as other children, but rather how much and how fast children learn may differ. Your child may need great support and more time to learn.

Sometimes a child with severe Rett Syndrome may have a lower intelligence because the part of the brain that controls thinking and reasoning is damaged A thorough evaluation (testing) by a qualified psychologist can tell you if your child's ability to learn has been affected by Rett Syndrome. An evaluation is painless and usually doesn't take long. You can have your child tested at several places.


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Is there a cure or treatment for Rett Syndrome?


There is no cure for Rett Syndrome. Treatment for this condition depends on what particular problems your child shows. Medication may be needed if your child has problems breathing, sleeping, moving or seizures. Some possible interventions:

Physical therapy: Helps children with the motor skills that use the large muscles in the body, the ones for sitting and walking. Therapy also is important to improve your child's muscle strength, and can prevent muscles from shortening.

Your child should get an evaluation (testing) from a physical therapist. A physical therapist can show you exercises that you and your child can do at home. Some assistive devices may help your child with problems in movement.

Occupational therapy: Can help your child develop such life skills as dressing and feeding. An occupational therapist helps your child train the small muscles in the body and can provide such assistive devices as braces, splints or casts.

Speech therapy: May be necessary if your child has problems speaking, communicating or swallowing. A licensed speech and language therapist, sometimes called a pathologist, will evaluate your child and help with language issues. Click on the following link for a list of speech therapists in your area.

Assistive technology: Assistive devices help someone with a disability or special need. Many devices are available to help your child do what a regular child can do.
Some examples:
  • Computer with a touch screen or board with letters to help your child communicate.
  • A spoon with large handle to help your child eat.
  • A leg brace or walker to help your child walk.


  • An assistive technology specialist will help select what devices or tools will help your child. Click on the following link for a list of centers that can help with assistive technology.





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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric physical therapist: A professional trained to help children make muscles stronger and joints in arms, legs and chest more flexible.

Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions. The therapist also helps figure out what problems with these joints and muscles will have on a child's daily living, e.g., getting dressed, eating. The therapist also can design and suggest assistive devices.

Pediatric speech-language therapist: A professional who evaluates and treats communication disorders (problems with speech) and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.

Pediatric psychologist: A professional who will test your child's ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child's ability to learn has been affected by having Rett Syndrome. An evaluation is painless and usually doesn't take long.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help obtain services and assistance.

Assistive technology specialist: A person who works with individuals with disabilities to provide assistive technology solutions. Those help a person with a disability to eat, speak, get around, work, play. An assistive technology specialist is familiar with many options to help your child live life to the fullest. Some services and assistive devices may be covered under Medicaid.

Pediatric gastroenterologists: A doctor specializing in treating children's gastrointestinal diseases. The doctor also treats bleeding, swallowing and other problems related to the intestines. Children with Rett Syndrome also may have such gastrointestinal problems as acid reflux and vomiting.

Pediatric neurologist: A doctor specializing in treating conditions of the nervous system and the brain in children. Seizure disorder can occur with Rett Syndrome.

Geneticist: A doctor or counselor who helps parents learn whether their child has a genetic condition causing a medical condition or disorder. A geneticist or genetic counselor also helps families understand whether future babies in their family are likely to have an autism spectrum disorder.

Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child's development and working with you to learn techniques to benefit your child.


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What are some websites where I can learn how to help my child?


International Rett Syndrome Association (IRSA) www.rettsyndrome.org Offers family resources, support, research, information, discussion forums and publications.

Rett Syndrome Research Foundation (RSRF) www.rsrt.org Lots of scientific information about this syndrome.

NIHCY http://www.nichcy.org/resources/rett.asp Fact sheet on Rett Syndrome.

University of Miami and Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD) http://www.umcard.org/index.htm Provides services to families and children with autism spectrum disorders in Miami-Dade, Broward and Monroe counties.


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What are some books I can read to my child or for myself?


Books for Children


Someone Special, Just Like You by Tricia Brown. This book shows preschool children with disabilities actively playing and learning. (Ages 4-8)

Don't Call Me Special by Pat Thomas. This delightful picture book explores questions and concerns about disability in a simple, reassuring way. Younger children can find out what a disability is, and learn how people deal with disabilities to live happy and full lives. (Ages 4-8)

Books for Parents


Keeping Katherine: A Mother's Journey to Acceptance by Susan Zimmermann. Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett Syndrome, and how she copes through obstacles.

Pathways to Learning in Rett Syndrome by Jackie Lewis and Debbie Wilson. Parents and teachers of girls with Rett Syndrome will welcome this book offering accessible advice on the special-education needs of these girls.

The Official Parent's Source Book on Rett Syndrome by James Parker and Philip Parker. This book is for parents who have decided to make education and research an integral part of treatment. Although it also gives information useful to doctors, caregivers and other health professionals, it focuses on parents and where and how to look for information covering virtually all topics related to Rett Syndrome.

Books for Siblings


Princess Pooh by Kathleen Muldoon. Jealous of her invalid sister's royal treatment as she sits in her wheelchair, Patty Jean tries out the conveyance and discovers life in a wheelchair is no fun at all. (Ages 4-8)

Living with a Brother or Sister with Special Needs: A Book for Sibs by Donald J. Meyer. This book lends the voice of hope, confidence and clarity to the experiences many people whose siblings with special needs have. It not only sheds light on many questions that often crop up, but also provides a safe forum to explore sibling issues.

Views from Our Shoes: Growing up with a Brother or Sister with Special Needs by Donald J. Meyer. A collection of 45 brief essays by children and young adults who have a sibling with special needs, ranging from mental retardation through a number of rare syndromes. The writings are arranged in chronological order, from that of a 4 year old to an 18 year old. They vary in quality as well as in insights into family relationships. (Grades 3-10)


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Ways to consider the needs of caregiving siblings


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