I suggested to her that perhaps she should try to get her child a place with Distance Education. “Oh no!” she insisted, “the doctor said I must keep her at school.”

I hear this type of thing all the time and I have mixed feelings about it.

Yes school is the most traditional way to further education and paid work but sometimes we really do forget that it is not the only option.

Teenagers deal with incredible pressure at school. They have their own angst, peer acceptance stress and academic performance to worry about as well.

If you add to that the pain and fatigue of a constantly changing medical condition it can be extremely difficult.

Is it really fair to give parents the brief to keep kids at school no matter what?

Is it fair to give those students the impression that they don’t have other good options?

Students who do Distance Education or Home School or even self directed learning do very well at university because they have learnt to manage their own study.

Places like Canning College offer students with health conditions incredible flexibility in catching up on study and gaining entry to further education.

So yes if school works for your child – that’s great. If it doesn’t please remember that there are lots of good options out there.

For my daughter a virus or a fall can mean a week in bed – often on pain meds.  Flare ups are painful but as she grows up she develops more and more ways of coping.

We had a different type of set back this last week. She has developed low blood pressure. This is pretty normal for teenage girls.

For my daughter it means that her already significant fatigue levels have gone through the roof. She has stopped going to school because she is too exhausted.

We’ve been through lots of health set backs. You probably have too. Sometimes you can shrug them off – other times they hit you hard.

This week I have been hit hard. A big ball of frustration and grief has surfaced. I am so angry that my daughters progress through life is so difficult. My daughter says to me “Mum I want my life to be easy.”

We both sat in the car the other day having a potato chip picnic and trying to laugh at ourselves. The constant set backs make us both grumpy and sometimes grumpy with each other.

I try hard to take a step back and say to myself – “Hey Julia in a week or so this will pass. Ease up. Stop taking life so seriously – it isn’t a race.”

Then the worries snap at my heals.  I worry about her education.  I worry about her joints stiffening up from the reduced activity.   I worry about her putting on weight because she is not moving.  I worry things will stay this way forever. Worry, worry, worry.

I read a wonderful quote the other day in a memoir by Australian writer Brenda Walker called Reading by Moonlight: How Books Saved a Life.

“When I recovered some confidence in my health, I felt that all the minor irritations and anxieties of life – arguments, moments of carelessness, failures of judgement, bad timing, the very things I might otherwise have wished to eradicate – comprised the grain, the detail, the very story of living that I should respect.”

I like to read this when I am heading off into a dark place in myself. Brenda Walker you have nailed it. We get so focused doing the right thing and moving forward that we can fail to appreciate everything belongs in the story.

I’d even go so far as to say set backs in health belong in the story as much as the good days. This is a difficult concept and a deeply calming one.

What strategies do you use to take the pressure down?  I’d love to hear about them.

To a lot of people it would seem incredible that a child in chronic pain would have to wait that long.  There are resources out there but it can take a huge effort if you don’t have the right words on the right bit of paper for the right person.

In this case the process for change followed these steps;

• The child had an assessment by her specialist.
• He wrote a letter to the school outlining the child’s condition and the effect this condition would have on her.
• The specialist wrote a referral for a private occupational therapist to visit the school and make an assessment of the school environment.
• The occupational therapist then produced a report for the school on the changes that needed to be made for the student to fully participate.

The school explained to the family that once the school has the report it must act on it immediately. Apparently there is considerable accountability to Disability Services once such a document is tabled.

In this case all the efforts to lobby the school for extra support had not been effective.  It was not until the family asked the specialist to assist that action was finally taken.

The assistance children can access depends on many factors-

• The time and energy parents have to knock on doors and ask for questions. (Are both parents working full time?)
• Access to a specialist with a willingness to assist. (Do families understand that their specialist can help?  Is that person approachable and helpful on this practical level.)
• The attitude and internal resources of the school. (Some schools have experienced caring staff who will help.)
• Resources within disability services in that particular area.

If your child needs extra resources at school you might try the process described above.

My husband also recommends writing a letter to the school Principal describing your child’s needs and asking what you need to do to access the available resources – from the school and any related government agencies.

I’d be interested to hear how you have tackled it and what your experience has been.

PS. We had a lap top provided for our daughter by the Centre for Inclusive Schooling. We found these people difficult to deal with.  Once it was too difficult for my daughter to attend school we transferred to School of Distance Education.  Our daughter continued her education from home. The Centre for Inclusive Schooling then asked for the laptop back.  Apparently she could only have a lap top if she went to a day school. Good one guys!

It is not always easy for children to avoid unsuitable activities at school.

Children with Ehlers-Danlos syndrome who had been told by doctors not to participate in certain activities were still being forced to join in.

“Why didn’t you say something?” parents wanted to know. The children all said they had tried to say no and give their reason, but the teacher just would not listen.

This same theme came up again and again.

Children are not believed.

School notes don’t seem to work because teachers can be different from week to week.

My sister is a teacher.  She told me that so many kids try to get out of sport that teachers become deaf to excuses after a while.

In several of the stories the children suffered painful injuries as a result of being forced into unsuitable activity in the classroom as well as on the sports field.

For these parents I was speaking to, an injury to their child had a big impact.  It might mean having to take time off work.

It could also mean visits to hospitals, doctors or physiotherapists,  medications and watching their kids in extra pain that was avoidable.

It makes me think that this problem could be addressed on several fronts-

• arming rheumatology kids with assertive skills training
• developing letter templates that help parents get their message across
• perhaps a medical alert tag/bracelet could be developed for arthritis kids

I’d be interested to hear whether you have had problems like this and what strategies you have tried.

Netball photo courtesy of tompagenet at Flickr Creative Commons.