Preparing the School for Your Child With Dandy-Walker Syndrome

Parent teacher conference

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Teachers can be great allies in keeping your child with Dandy-Walker Syndrome safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. I asked Terri Eldridge of the Dandy-Walker Alliance what teachers need to know about kids with Dandy-Walker, and she took the question right to parents, surveying them on their children's school issues and asking for specific things they'd like to tell teachers. The list below is based on their responses; pick the suggestions that are appropriate for your child, add some of the printouts linked to below, and create a information packet to bring educators up to speed.

1. My child has coordination problems with both fine and gross motor skills that may affect schoolwork and mobility.

2. Repetition is often key in helping my child learn, as he creates new pathways in his brain to compensate for damaged ones. Patience and repetition are required. My child may know something one week and not know it the next. Things may need to be re-taught before they really stick, but in most cases my child will eventually retain the information.

3. My child may tire more easily than other students. Please be sensitive to this and understand that it is not a trick to get out of work.

4. My child has sensory issues and needs a stable environment to avoid meltdowns. At times her brain may not process sensory input -- things like noise, touch, or visual input -- correctly. Or just the opposite, she may seek sensory input to stay centered. Please understand that this is an issue related to her disability, and not a behavior issue.

5. Processing of information may be delayed for my child. It may take him a moment or two to understand a question and reply. Please be patient; this is not defiance, it's just a little extra time needed for full comprehension.

6. Changes in routine can be disruptive for my child. Please try to give us advance notice of changes if you can so we can prepare her.

7. My child may have trouble interacting socially due to challenges with interpreting information correctly. Please help make peer contact easier when you can.

8. Visual perception and vision in general may be a problem for my child. Please let us know if this is causing difficulties in the classroom.

9. My child has hydrocephalus and a shunt. It is imperative that you know the signs of increased intercranial pressure, which include lethargy, headaches, and vomiting. These may appear to be nothing more than a "bug," but in fact it is a life-and-death situation, and symptoms should not be taken lightly.

10. My child may have a seizure while in your classroom. Please be in touch with the school nurse to review procedures for dealing with them.

11. It's okay to let my child's classmates know about his condition as long as it is done in an appropriate way. I'd be happy to help prepare a program.

12. My child has a serious health condition, but she is still a child with ordinary interests and hope and dreams. Please help us keep her life as normal as possible.

13. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.

Printouts to Share with Teachers

Fact Sheet: Dandy-Walker Syndrome (pdf)
Source: Colorado Services to Children With Disabilities

A Teacher's Guide to Hydrocephalus (pdf)
Source: Hydrocephalus Association

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