This week I was asked by my children’s physiotherapist if I could get my children involved in little bit of research on their behalf.  They will be presenting the service to an outside agency and want some real examples of what physiotherapy means to the children who use it.

All three of my children access the physiotherapy services at the Child Development Centre  (CDC) of the local hospital.  My youngest is five and has been regularly having physio (and some hydrotherapy) since she was 18 months old and throughout her time with the team she has collected the labels of Charcot Marie Tooth Disease and Connective Tissue Disorder (most likely EDS) to explain her mobility problems.   Her main problems, from a physical therapy perspective are, extreme hypermobility (everywhere), weakness and hypotonia which cause pain and fatigue.  She has a whole body programme to improve strength and stamina as well as focussed exercises for different areas when there is a specific problem i.e. – for a sprain in her foot from walking on her pronated feet, after a shoulder dislocation or for flares of pain in her knees from hyperextension.  Physiotherapy is ongoing and fully co-ordinated with occupational therapy and orthotics.

My boys attend a little less regularly, for one, who’s 9 it is all about alignment for his hypermobile joints, building strength in his knees and maintaining strength in his whole body over time.  It can also mean more regular trips to and from the hospital when his knees require taping.

The other, who’s 11 (and has a diagnosis of Ehlers-Danlos Syndrome and dysautonomia), physiotherapy involves strengthening his weak core and lower body, particularly his glutes and hips.  He needs to build and maintain overall strength and stamina.  His programme needs to happen most days to keep him conditioned.

They all love going to the CDC for their sessions.  They have got to know their therapists really well over the years and like a chat if I’m honest.  I love the team approach to everything and the support that they have given me with school and other areas and I was fortunate enough earlier this year to have the opportunity to lead a training session to all of the CDC staff.  The services work best when everyone works together.

However, I find completing all of this at home for my three children (and myself of course) hard work.  Motivating all of them (or bribing them) can be a constant battle.  When my daughter is fatigued from just getting through the day at school any quality physiotherapy at home Monday to Friday is minimal.  When Physio is not completed properly, for whatever reason, I feel guilty because I know that it is important to build and maintain strength and stamina and to avoid them ever having a traumatic dislocation or to surgery later on to fix worn out joints.  I know that pay off first hand.

So we try hard to make it fun, turn things into a game or a challenge, then it’s more enjoyable for everyone.  We have a rule even if it’s ‘just 5 minutes’ we manage something because just 5 minutes every day is better than 15 minutes once a week.  We also try to stay active every day, table tennis, dancing, football, skateboarding, riding bikes, walking the dog so that it is just part of what we do. Another thing we try to do is not to sit still for too long. Even if I just want to flop on the sofa and collapse I get up walk about and have a stretch every 10-15 minutes.  I encourage all the children to do the same.

So I asked all three of my children to finish the sentence

Children’s Physiotherapy is…. 

I was apprehensive about their responses, how would they feel about physiotherapy? Would they see it as a chore? Do they realise how hard I try to motivate them? Do they sense my guilt? Do I nag them too much? Is it too much? Is it too little?  Here are their responses….

 

Phew! I’m actually quite proud.

Physiotherapy, looking after themselves and being strong will have to be part of life for all of them as they grow into teenagers and on into adulthood if they are going to remain their strongest, best selves.  Maintaining strength around joints will help to stabilise them where their tissues can’t and for my daughter in particular to maintain maximum strength as her muscles atrophy.  Remaining conditioned will also minimise the fatigue from autonomic dysfunction.  I want to help them to integrate it into their daily lives so that it becomes natural to them, like brushing their teeth, and support them to become independent with their own wellness.  I hope we can achieve it, only time will tell.

In the meantime I will continue to lead by example and at least be rest assured that (for now at least) I can actually say that they enjoy their physiotherapy!

If you want to find out what I talked about when I visited the CDC to talk to the staff check out these links I wrote it up in a couple of posts the first was picked up by ‘The Mighty!’

5 TOP TIPS FOR DOCTORS AND THERAPISTS WORKING WITH CHILDREN WITH RARE CONDITIONS

MEDICAL PROFESSIONALS – PLEASE CONSIDER THESE THINGS WHEN DEALING WITH MY LITTLE FAMILY…

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