School and check ups: jugglers required – no experience necessary

By Linda Williams 

Balancing medical appointments and school can be a hard call at times.

My son’s medical appointments are all related to his diagnosis of Duchenne Muscular Dystrophy; they’re all essential to attend but I don’t want to keep putting him in a position where he feels he is having to play catch up or is missing out on educational and social inclusion opportunities.

DMD is a progressive muscle wasting condition. On average, those with the condition can live until their early twenties, meaning time isn’t exactly on their side. I want my son to have a full life and to experience just as much as his older sister will. I want him to be able to access things that he chooses to do or see and not what is just available to someone with DMD or someone in a wheelchair.

Appointments are par for the course when you have Duchenne Muscular Dystrophy (DMD) – I learnt that very early on after my son’s diagnosis in 2014. He is now 5 years old and the appointments he is required to attend over the course of a year include neurology, physiotherapy, hydrotherapy, occupational therapy, cardiology, equipment trials, paediatrician visits, fittings for AFOs, riding for the disabled and the odd visit to the GP for a referral or form to be signed, or for any other ailment. And most of these appointments need to be attended multiple times during the year. 

I know how important his appointments are – Harrison’s capabilities are gradually changing and some deteriorating and each appointment is geared towards helping with his independence, mobility and health. However, now that he has started school it’s become very apparent how important inclusion is to his over-all well-being too.

It’s just a matter of appointment setting and getting the balance right. It would be quite easy to accept or arrange every appointment as it is offered to us. I have done this in the past – I work part-time so I try to arrange my son’s appointments on the two days a week I don’t work. I learnt my lesson though; one week we had three separate appointments around town on one day: a paediatrician, our regular doctor and, at the end of the day, a hydrotherapy session. I did not consider how exhausting this would be on Harrison, and for me as well. He wasn’t even school age then but the next day he was extremely fatigued. 

I promised myself that, from that point onwards that I would keep attending all the necessary appointments but that I would take more care in spreading them out.

Now Harrison is at school I know I will have to remove him from his classroom occasionally to go to these check-ups because, like it or not, some of these appointments are not flexible.

But while my son has his battle with a muscle wasting condition I will make sure he doesn’t feel like he is playing catch up with his learning or is made to feel on the outside of his peer group because he’s missed out on something while he was absent. He doesn’t need these worries to be added to the ones he already has because of my doing.

But that’s any mum isn’t it. There’s a name for it I believe: mother’s guilt. Mums always worry. It comes as part of the job description!

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