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Raising EDS Kids

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Having a chronic illness or two is one thing but raising children with Ehlers-Danlos syndrome is another completely. I want to give you a little window into our lives so that you can see what goes on behind the scenes so to speak.  To orchestrate a semblance of normality to the outside world.

Most families with their two point four children get their children up in the morning, give them breakfast and pack them off to school for the day, perhaps have a little chat in the playground then hurry off to work wondering in the back of their mind what they might cook for dinner that evening.

In our house, the picture is a little different.

I get my oldest up for school and he can barely stumble downstairs after finally falling asleep at 1am he has spent the whole night tossing and turning.  He eats his breakfast with his eyes barely open then falls straight asleep again on the sofa.  I have to decide if I let him sleep, because it is what his body needs right now, or wake him up, help get him to get ready for school and drive him to the bus stop.  His school have a plan to help him to manage fatigue during the school day but today I don’t know if any plan will be enough.  When his body can’t cope like this his brain is foggy, he doesn’t concentrate and he then ends up getting in trouble for a whole host of things; forgetting books, calling out, talking or not producing enough work.  So I decide to let him sleep and to drop him in later if he wakes and feels OK.

Then our daughter gets up and immediately complains of pain in her ankle.  She actually finds it hard to bare weight at all.  I do the usual, distract, play it down – sometimes this is enough.  Not today, putting tights on is excruciating and shoes almost impossible.  I decide to let her take her wheelchair into school (which is something I have never done before unless there is an outing) and I carry her to the car.  At least today is one of her planned half days.  As I stand there it comes to me, yesterday we played dress up.  She styled my hair then she put on clothes and walked the catwalk like a model.  That walking up and down the front room was probably enough.

When I wake my third child I am thankful that he only has a cough to contend with.

We still make it to school on time.

If I am a little distracted at the school gate when you say good morning please do not take it personally.  I may be a little focused on other things.

As well as this I am wondering if we remembered to fill out the daily fatigue diary last night for the physiotherapist to try to pinpoint any points in the day where rest breaks would help my son.

My mind is also thinking of the call I need to make to the SENCO and pastoral assistant at school to follow up on a couple of points from our meeting on Monday and fill them in on the other other outcomes from our clinic appointment yesterday so that they may be better placed to support him.

I also need to remember to book an appointment at my other children’s school to talk about the changes that need to be made into to my daughters Individual Health Care Plan following her recent hospital appointment so that her symptoms don’t continue to go downhill.

This is on top of the 15 other calls that I have made this week to schools, therapists and support services that are whirring round in my mind.

In the back of my mind I have to remember to post the detailed sensory processing questionnaires for the kids for Occupational Therapist which are already a bit overdue, to buy some PJ’s before my own hospital stay next week, arrange child care for that visit and cancel another appointment for myself because it’s just one too many this week.

I want to chat, to make small talk and ask about your day, I do.   But I have learnt to be a zebra mum first, an advocate, a PA, a minute taker, a mediator, a nurse, physio and occupational therapist, a cheerleader and sometimes a little heartbroken because if I don’t have a handle on all of this then no one else will.

All kids need a champion and I am theirs.

Find out more about our new ebook – coming soon.

EDS Kids Handbook – 51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos (EDS). Written with Kendra Neilsen-Myles form EDS wellness, with a special section fron Deborah Roach about vascular EDS.


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