Common School Concerns for Students with MHE

Having Multiple Hereditary Exostoses does not affect a child's ability to think and learn. However, pain, fatigue, and mobility issues can affect both a child's ability to concentrate and a child's performance in school.  The following are just a few of the many challenges that might be present for a child with MHE, as well as some possible solutions. It is important to develop a partnership with your child's school to find the best solutions for your child's particular needs. Some schools will supply needed accommodations on an informal basis; other times it will be necessary, and often desirable, to obtain a 504 Accommodation Plan or Individual Education Plan ('IEP") for your child.  It is important to remember that some of the most valuable ways to help your child are communicating with your child's teacher(s) on a regular basis, and informing school personnel when there is any change in your child's condition. There may be times when modifications are required due to fatigue and decreased endurance levels, new problems with pain and/or mobility due to exostoses growth, scheduled surgery and  recuperation, etc.  Unless you let the school know what is happening, they will not understand what your child is going through.  Accommodations are not something that are just given. They must be requested and justified, and it is often up to the family to make appropriate suggestions as to what will best help their child. Remember that you are your child's best advocate, and that it will be necessary for you to teach your child's educational team (teacher(s), school nurse, administrators) about MHE and how it affects your child's educational needs. To learn more about your child's educational rights, contact The National Information Center for Children and Youth with Disabilities (NICHCY), P.O. Box 1492, Washington, DC 20012, 1-800-695-0285, http://www.nichcy.org

Difficulty:  Difficulty climbing stairs or walking long distances Strategies:   *Request elevator permit *Schedule classes to decrease walking and climbing *Request extra time getting from class to class *Use a wheelchair if needed

Difficulty: Inactivity, stiffness due to prolonged sitting Strategies: *Change position every 20 minutes *Sit at the side/back of room to allow walking around without disturbing the class *Ask to be assigned jobs that permit walking (collect papers, etc.)

Difficulty: Difficulty carrying books/cafeteria tray Strategies: *Keep two sets of books; one in appropriate class, one at home *Have a buddy to help carry books *Determine cafeteria assistance plan (helper, reserved seat, wheeled cart)

Difficulty: Difficulty getting up from desk Strategies: Request an easel top desk and/or a special chair

Difficulty: Handwriting difficulty (slow, messy, painful) Strategies: *Use "fat" pen/pencil, crayons, special pencil grips *Use a felt-tip pen *Stretch hands every 10 minutes *Use a tape recorder for note taking *Photocopy classmate's notes *Use a computer for taking notes, reports, etc. Many students with MHE have had good results with the AlphaSmart Keyboard *Request an alternative to timed tests (oral test, extra time, computer) *Educate teacher - messy handwriting may be unavoidable at times

Difficulty: Difficulty with shoulder movement/dressing Strategies: *Wear loose-fitting clothing *Wear clothes with Velcro closures *Get adaptive equipment from occupational therapist

Difficulty: Difficulty reaching locker Strategies: *Modify locker or request alternative storage place *Use two lockers with keylocks instead of dials

Difficulty: Difficulty raising hand Strategies: Devise alternative signaling method

This material has been adapted for children with MHE (c) 1998, Raising a Child with Arthritis. Used by permission of the Arthritis Foundation, 1330 W. Peachtree Street, Atlanta, GA 30309. For more information, please call the Arthritis Foundation's Information Line at 1.800.283.7800 or log on to www.arthritis.org

School Needs Checklist Issues to Address with your Child's Teacher and Other Staff The Arthritis Foundation http://www.arthritis.org

The MHE and Me Handbook - A Guide for Families, Friends, Teachers, and Classmates The MHE and Me Site Map Home