Article - The School and EDS

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School and EDS

By

nne Karwowski Hoppel

Through a cooperative spirit, open dialogue and common sense, you can help

your child gain the most that your school has to offer. It takes diligence

and hard work to find all the avenues open for your particular situation,

but the rewards are great.

Ten Hints to Help Your EDS Child in School

First and foremost, be as thorough and honest as possible in discussing the

diagnosis of Ehlers-Danlos Syndrome (EDS) with your child. Children,

especially young ones, will often think that it was something they 'did'

that brought EDS. Your physician(s) can help you explain that it was not the

child's 'fault'. An explanation using easily understood genetics, like blue

eyes for the recessive forms of EDS and brown eyes for the dominant forms of

EDS will help them understand that they had no control over the presentation

of the gene. For more help, the Arthritis Foundation and major teaching

hospitals may have support groups where children can go and ask questions,

and also meet some other children their age who share the ED syndrome.

Second: As soon as your child as an established diagnosis of EDS, schedule a

group meeting with all or your child's teachers, and, if possible, any

auxiliary staff at the school. The auxiliary staff would include the school

nurse, social workers, occupational and physical therapists, special

teachers of gym, music, and art, principal and/or assistant principal and

the para-professionals. Ask to schedule and hour of their time, so you won't

feel rushed.

Third: At your initial meeting, have all diagnoses and recommendations on

paper. Be sure to have copies for the school's permanent health file, and

keep the originals for yourself. During the meeting, you will probably have

to explain what EDS is and what it means to your child. The Arthritis

Society and the Canadian Ehlers-Danlos Association have a general

information booklet on EDS which can be distributed to those at the meeting

and one should be included in the medical file. In some instances, some

children will not need special help only the awareness of the teachers that

if they dislocate, or if they cut themselves, immediate medical attention

will need to be sought. Sometimes rest breaks during writing of physical

education are prescribed to alleviate painful joints. This is usually very

easily handled without disruption to the class by the instructor. In other

cases, classes and curriculum will need to be altered to fit the child's

limitations. If the latter is the case, you and your child are protected

under public law to have these alterations made. For instance, if jumping is

not allowed during gym class, your child will not be allowed to jump.

However, this does not mean that your child will be excused from gym. An

alternative should be worked out so the child is participating in gym class.

Alternatives to gym class are doing their home physical therapy during the

class, acting as a score keeper during a game, or serving as a statistician.

The physical education instructor should have more suggestions. Having your

child actively involved serves two purposes; one, the child will be

receiving some physical education, quite possibly for the strengthening of

the gross motor muscles and two, he or she will continue to feel like a

member of the class.

Fourth: During the meeting, ask if you or a member of the staff could

address the child's class to explain what EDS is and how it limits the

activities of your son or daughter. This helps the rest of the children

understand the special needs presented by your child. It will also help to

curtail any type of teasing as the children will empathize with your child

rather than antagonize him or her. Furthermore, if your child will be

needing help during the day, the children can help out in their own ways,

thus freeing the teacher of these tasks.

Fifth: If EDS is severe, your child may need an adult assistant available to

help him or her throughout the school day.

Sixth: Some children take special delight in amusing their classmates and

parents with their 'double-jointedness' or 'skin stretching'. A good rule to

follow is that they only can perform if a medical doctor is present. This is

important for two reasons: the first prevents any injury your child may

suffer doing these 'tricks,' and the second will help the child from feeling

'different.' It is important that the child is judged for who he or she is,

not solely on physical appearance or limitations.

Seventh: If you have problems with specific medical recommendations being

implemented, schedule a meeting as soon as possible with the classroom

teacher, or, in the case of older students, the school counselor. During the

meeting, ask some of these questions: Did you understand what Dr.

prescribed? Is there a reason why these recommendations can not be

implemented? Can the district find the necessary equipment? What can I do

to help?

For instance, if your child needs to type rather than write because of hand

problems, and there is no keyboard available, offer to help find a suitable

donor. Usually the schools have access to charitable foundations to supply

special needs. If you are in need of equipment for home use, the school

should share with you these agencies so your son or daughter will be

successful in their educational pursuits. If the classroom teacher or

counselor cannot help you, do not hesitate to 'climb the ladder' of the

school administration. There are many parent advocacy groups that will

assist you if you need to leave the school administration and talk with the

board of education.

Eighth: Strongly encourage your child to speak up when he or she feels that

they will not be able to continue an activity. EDS is a lifelong syndrome,

and early protection of joints and skin may help prevent the onset of the

more debilitating aspects of the syndrome. A gentle reminder, though, is to

not let them use EDS as an excuse to avoid doing things. If this is the

case, a simple phone call to the parent from the teacher will help the

instructor decide whether the child is or is not capable of doing the task

at hand. Remember, the parent is the expert with his or her child and

child's behavior. Although this may seem bothersome at the outset, the child

will learn that the educators and parents are working as a team for the best

interests of the child.

Ninth: If your child is injured at school, immediately take the child to a

medical facility or your physician. Suturing, dislocations, sprains, breaks

and so forth are more easily handled early on. Talk with your child and ask

what happened. Take notes, and when the trauma has passed, talk with your

child again. The school has an obligation to provide a safe environment for

your child. If your child was injured due to the school's negligence, you

may choose to contact a lawyer to investigate your and your child's rights.

A note of warning: the school district can stall for many reasons, all of

the legal. In this litigious society, the school is well armed to fight

'frivolous' or 'little' issues. It is a rare instance for a school district

to knowingly defy a physician's orders. Hopefully, with all the groundwork

that you've done, this will not be an issue.

Finally, the most important aspect in dealing with the school district is

assuring them that you have the welfare of your child's education in your

best interest. There will be times of trial and error, and times of great

joy. Carry a sense of humor in your back pocket and remember on important

fact: your child may make a difference one hundred years from now.