Article - School Statistics and EDS

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School Statistics and EDS

From the 127 questionnaires sent out, 72 were returned (57%).

As adults were invited to complete their children's form as well if they

wished, and if they too have EDS, total replies from all age groups was 95.

Of these 60% were female and 40% male.

66 returns were from children and young people 4 to 19 years. Of all replies

:-

70.5% reported problems with writing:-

51% have poor writing

54% found pain in writing

47% took a long time to write anything by hand

73% have or had difficulties in motor control i.e. using hands and arms:-

40% using tools

32% trying to put in a screw

41% find cutting up a problem

40%+ had difficulties in hand mixing, opening packets, peeling, lifting and

carrying.

88% have had problems in physical activities - what a surprise!

70.5% with running

59% jumping

57% in tackling in contact sports

45%+ experienced problems with - throwing/ball control, gripping,

hand-ling,bats/racquets,, lifting, ,balancing climbing

60% found body movements difficult

64% couldn't easily stand for long periods e.g. in Assembly, whilst 43%

found even sitting on the floor uncomfortable.

21% reported discomfort in sitting at a keyboard.

29% reported spilling or dropping objects or liquids.

Helpful attitudes in school were much more noticeable in children and young

people still there. The older people did not have much help and indeed a

number recorded rank antagonism to their disability whilst at school.

A number of people gave more information which can not be quantified as a

statistic, but is very helpful in adding details to the questionnaire

replies.

If anyone wishes to see the full break down of the figures, then Bill Rodley

will be happy to send a copy if you care to contact him at the address given

at the end of this report and enclose an SAE please.

I am most grateful for the excellent response of so many members of the EDS

Support Group UK to the survey. The notes of thanks and support were very

encouraging. There were some sad and some amusing anecdotes, and it was

pleasing to see that many of the young people had filled in their own forms.

I was surprised that so many parents were able to record, so very vividly,

their own trying times at school when few, if any, had been identified as

EDS sufferers.

ANECDOTAL EVIDENCE TO THE SURVEY.

Those who received the questionnaire package will be aware that parents in

particular were invited to add any other comments they wished, in addition

to completing the questions on the form.

Quite a number were good enough to do so, and I am most grateful to those

who sought to share concerns and experiences with me.

Though these comments can not be included in any formal way in the results

we present, they do add to our general knowledge of the effects

Ehlers-Danlos Syndrome can have on children at school and later in

further/higher education.

The stories confirm that more problems arise as children move into the

secondary stage of education. Big schools with many storeys, and therefore

stairs to climb, have caused problems. Ability to evacuate from higher

levels at speed for emergencies is a serious concern. This continued at

University for one young lady.

Fatigue during examinations, especially A levels was a feature referred to

by a number of parents. Many recorded frequent injuries during games and PE

activities, resulting in hospital visits, and legs in plaster. I have to

admit that I know all about this!

One overall impression from the letters and notes received is of a much

greater understanding amongst schools in quite recent times.

One correspondent compares the treatment of her two children. The older one

was treated with unbelievable cruelty, even being required to withdraw from

the school because it was suggested her difficulties were being concocted.

The younger child was being given help and understanding. Primary schools

are noted as being on the whole supportive; secondary ones do not pass on

information to the much bigger departments and many staff.

This greater acceptance of need and willingness to help will, one hopes,

give encouragement to those parents who so kindly and sweetly wrote to say

that their children were still little tots, not yet in school, and were

happily free from major problems at this stage.

PHYSIOTHERAPY AIMS

These suggestions are contributed by Aylott, MCSP.,SRP., a

physiotherapist who has had the opportunity to study Ehlers-Danlos Syndrome

patients in detail.

He was shown the survey statistics and invited to comment on the results.

ACTIVITIES USING HANDS AND ARMS.

1. For writing it is easier to use a 'chunky' pen rather than a fine one. A

sloping desk surface is also useful.

2. Dexterous movements are achieved by opposing the thumb to the index

finger and the middle finger (the dynamic tripod) whilst gripping a handle

relies more on 4th & 5th fingers.

3. When trying to perform a skilled operation with the hand, it is helpful

to support the forearm on the work surface if possible. This reduces to a

minimum the joints in use and the muscle work needed to control them. This

lessens fatigue.

4. Squeezing a rubber ball or using Playdough, will help to strengthen hand

muscles. As with all exercises GRADUATE your efforts. Small weighted wrist

straps can also help. (Note: Playdough can be bought sometimes from an Early

Learning Centre shop in just one tub, cheaply. They keep a few for physio

work. The wrist straps are available in sports shops)

5. If keeping handwriting to a straight line is really a problem (a few say

this is so) then the RNIB produce a writing aid which incorporates elastic

strips)

GENERAL EXERCISE.

1. There must be caution in any exercise that involves joint stretching.

2. Any attempt at building muscles should be done GRADUALLY. Resistance or

weights used should not be excessive. The emphasis should be on repeating

the exercise not using heavier weights. The use of 'Flexaband'** is helpful

for muscle strengthening. It consists of elastic strips of varying

thickness.

3. No activity should be performed after it becomes painful.

In school, a child will have to say clearly " It hurts, please may I stop? "

Standing or sitting on the floor, (found a problem by many) must be relieved

when it becomes painful. It is probably better not to get into the position

in the first place if, for example, the teacher will let the child sit at

the back or the side of the group, so it can move its position.

**FLEXABAND - an elastic exercise aid obtained from::-

TRIMILIN UK Ltd., Unit 16, St. ' Industrial Estate, Westhampnett Road,

Chichester, W. Sussex PO19 4JU

EDS - OCCUPATIONAL THERAPY AIMS AND INTERVENTION.

These suggestions are made by Alison Cairns B.Sc.(Hons) Dip.COT SROT,

Manager, Disability Initiative Resource Unit, Camberley.

AIMS.

1. To improve independence in activities of daily living through the use of

equipment.

2. To explore alternative ways of performing activities whilst keeping the

body working and the person independent.

3. To advise parents and teachers about the effects of EDS and so promote an

understanding of the disability.

4. To maintain the individual's physical abilities and at the same time

assess the needs of the whole person and how EDS affects them and their

family.

WHERE TO GO FOR HELP: -

Things you can do for yourself or for your child!

1. Contact the Social Services team in your area. Ask them for an

Occupational Therapy assessment from their Families and Children team.

2. Contact your local general hospital and arrange an outpatient appointment

with the OT Department. This would be for an assessment with the Paediatric

OT. You may have to do this through your GP or a Consultant.

3. Visit a shop in your area - (e.g. Boots), and see what equipment is

available (see listings below)

4. Some hospitals have an 'Aids and Equipment' demonstration centre which

you can visit.

5. Contact one or more of the independent services (listed below) or an

Information Service.

WHAT WILL AN OCCUPATIONAL THERAPIST DO?

1. Assess the individual's abilities and difficulties by asking them to

perform a series of tasks which highlight their problems. A statement of

needs will then be produced for School, LEA, or any other professional

involved e.g. a physiotherapist.

2. Ask the person about their daily routine and daily activities. Find out

what difficulties they encounter and how they manage them now.

3. Find out if there is anyone to assist them in their daily living at

school or at home.

4. Visit the school to talk to teachers, if possible.

5. Arrange a loan of equipment to try out and give advice on its use.

6. Arrange for re-assessments and follow-ups.

7. An OT can provide splints to aid the hand function through correct

positioning. They will have details of possible local groups, e.g. a sports

group or a toddlers group where there is an awareness of people with a

disability.

You may not have come across an Occupational Therapist before. We try and

look at the needs of the whole person and assess all the areas that are

affected by the disability. This can be the emotional effect on the whole

family or social effects on the individual. We do our best to advise and

help.

EQUIPMENT THAT MIGHT BE OF HELP IN SCHOOL.

WRITING

Try and see an OT first. There are a number of pens available which offer a

different hand position and give a larger surface for grip. (see suppliers

below)

Get an OT or a Physio to provide a specialist splint.

Look at possible alternatives e.g. a Notebook or laptop PC; tape recording

lectures in higher/further education; asking for someone to support you in

class or lectures(see Statementing) and certainly in long exams. This is

permitted by Exam Boards at GCSE and higher levels.

CRAFT LESSONS

Use an OT together with the teacher to see if there are ways of holding

materials, or redesign the grip on a tool that you need frequently.

REMAP (see below) helps individuals with one-off problems, by providing an

engineering solution. They undertake to make and design specialist tools,

clamps or other aids to help disabled people perform difficult tasks.

HOME ECONOMICS

Use catalogues of suppliers perhaps to buy specialist equipment to help with

chopping, cutting, opening packages, holding, lifting, turning knobs etc.

There is a lot available.

INFORMATION TECHNOLOGY

There are a number of specialist companies that provide equipment for the

disabled in the field of computers, e.g. trackerballs, joysticks, keyguards.

Many major software producers now make easy to use WP packages which do not

require keyboard dexterity. Word processing can be simplified by voice

activated systems, predictive typing and thesaurus options and touchscreen.

A local Special School for children with physical disabilities may also be

worth contacting for some ideas.

SCIENCE and ART

Handling problems are helped as above.

SEATING AND POSITIONING

It is important to work or sit in a way which helps you perform the activity

in a comfortable manner. A school ought to provide you with a desk and chair

that are suitable for your needs. The usual types may not be suitable for an

EDS sufferer and indeed, may make things worse. A multi-adjustable seat with

good lumbar support , arms, height adjustable, will serve most classroom

lessons. An adjustable work surface for height and angle would also help.

Obviously at secondary level and above, moving around the campus makes this

option less easy.

For drama lessons and other non-classroom activities, a supportive bean bag

would be useful, though you may need help from a teacher or a friend to

actually get up!

SOURCES OF EQUIPMENT

There is a comprehensive list of suppliers as part of this survey. However,

you may not know that there are some sources of free equipment mentioned

above.

Much equipment for people with a disability is expensive. It is therefore

wise to check and see if Social Services or the hospital OT's are able to

loan you something to see if it is helpful.

If you are buying DO try and get some professional advice before spending

your money. Some of the suppliers listed e.g. Keep Able have trained staff

at their showrooms to advise you.

If a major item has to be bought, especially for a child, then there is some

hope of getting a grant from a charitable organisation like the Rotary Club

or the Lions.

There are also many local fund-giving charities who may be willing to help

with smaller items. In making an application, it will help if you have an

assessment statement from an OT.

SOME SUGGESTIONS FOR APPROACHING YOUR CHILD'S SCHOOL

In the many responses to the questionnaire that we received, it was pleasing

to note that many reported schools were offering help and trying to

understand EDS. A few people said there was no help offered and little real

attempt to appreciate the problems.

We give a few suggestions here of what approaches might be made to a school

for any child who has EDS, and include some information on Statementing.

This is a formal procedure for those children who, unfortunately, have

severe difficulties. (See also the article written by Joan Benham)

If a child is starting either school for the first time or at a new school,

it is always advisable to contact the school before term begins. Talk to the

Headteacher, the Form Teacher or Tutor, and explain what problems the child

has. It would be useful to offer a copy of the EDS booklet, 'A Guide for

Teachers.' If you are able to write out clearly where their problems lie and

what might happen, e.g. " If he plays contact sports he could well dislocate

at the first tackle, " this ought to be valuable for the school. In a

backhanded sort of way, it is also useful if they do not take notice and

sadly the child ends up with a dislocation, in hospital.

If your GP or Consultant has made any recommendations, then you ought to

have a copy of these to hand over at the same time.

Do try and be positive for everyone's sake. If there are things that your

child can do, especially in the sports area, say so. If you have already

worked out a strategy to by-pass or overcome some other problem, e.g. in

using pens and pencils, explain what it is.

When changing class or school, it is suggested that you make sure the next

teacher/school is well aware of the problems as soon as possible. It is not

a good idea to wait until the first day of term when a teacher will be quite

overwhelmed by all they have to do. In the case of a school change, any

restrictions on physical activities should, if at all possible, be

accompanied by that letter from the consultant or doctor. This ensures that

no one thinks you are simply being over protective or plain fussy.

If some problems develop during the year, then do get in touch quickly and

shout loudly but politely. Try not to leave your child to suffer in silence.

If a new activity is about to be introduced, then try and work out if it

will have any effect that could lead to difficulty.

Remember, no teacher can possibly be expected to carry in their memory all

the problems that each child has. It is better to give a quiet warning than

to wait until disaster strikes.

If it is necessary to use special pens, scissors or any other equipment like

this, remember it is your job to see that your child has them available.

P. S. Do spare a thought for the teacher who may well have 30-plus other

children to care for.

If your child really has substantial problems then you can request that the

Statementing procedure be started. This is the formal recognition that quite

severe difficulties have arisen for the boy or girl and that the school is,

perhaps, unable to cope with these satisfactorily. It would usually be used

for learning difficulties, but is available for those with physical problems

as well.

It should be stressed that if possible this should only be initiated after

full discussion with the Headteacher. If the Head agrees, it will enable

extra resources to be requested to help your child. The procedure does take

some time, and could result in the Authority asking for your son or daughter

to be moved to another school where the problems being encountered can be

better met. There is no requirement that an individual school must spend a

lot of money just on one child. That clearly would be quite unfair; there is

not a bottomless well of funding in education.

One thing that the survey has revealed is that, not surprisingly, few

children want to be seen as different. However helpful a teacher is, there

is always a danger that other children will see the special treatment as

unfair. Not many of us can be seen to have EDS. It is suggested that

parents, where help is on offer, make sure that it does not lead to

unkindness from the peer group.

The best advice is to ensure that major problems do not arise for your child

in school, by telling those responsible for him or her what difficulties

there might be. Our survey shows that many schools are being as helpful and

co-operative as they can. This should give all parents of children with EDS

some confidence and hope.

Rodley, ACP., DASE., F.Coll.P.

36 Bainton Mead, Goldsworth Park, WOKING, Surrey GU21 3LW