Fitting it all in - exercise and additional needs.

Many people ask me how our children manage to fit so much in, and participate in activities despite obvious difficulties. I wrote this for the FABED magazine recently about how we juggle multiple health and activity in our family.

Like any mum with several children I am often split in several directions at once, to ensure that all receive as fair a portion of my time and attention as possible, and have their needs meet. But with all four having health issues this can be particularly tricky, add to that huge age gaps and an husband absent much of the week and a degree in juggling is not only advantageous, but a prerequisite for survival.

All my children, like many with EGID (see above - “What is EGID?”), are hypermobile and suffer side effects from this condition to some extent or another. All need regular exercise to strengthen their muscles but in different ways, and one is on the Autism Spectrum and resists any exercise he regards as “prescribed” so you have to employ every ounce of cunning to sneak up on him!

It might seem that exercise, which can cause pain, is a bad idea with hypermobile joints. All joints are supported by ligaments and muscles though and if the ligaments are weak, muscles need to be supportive and strong if at all possible, but not too tight. Otherwise partial dislocations (subluxation) and full dislocations are possible, and injury more likely due to weakness.

It’s a balancing act though as overdoing things can lead to considerable pain (especially at night). Muscles also frequently over tighten, especially with age to compensate for weak ligaments which can cause further problems so professional advice is always recommended before enrolling your child on a sports programme. 

We do our best to keep all the children mobile, and as a firm believer that sport brings huge benefits all round (socially, emotionally, physically) I was adamant that all were going to be as active as possible with sensible input from health professionals where appropriate.

My eldest is 15, he is hugely into Athletics and competes at County level despite considerable problems with toe and foot joints. He wears specialist orthotics which support his feet when running in all but his track spikes and takes extreme care to warm up and cool down properly. His calf muscles are so tight that following a huge growth spurt recently his legs bow out below the knee and has mild scoliosis so he does need to be sensible. However, our (NHS) physiotherapist is fabulous and has provided a sensible exercise plan and he is seeing the benefits. He excels during the Cross Country and Athletics seasons at school and competes well above his age group. I’ve always encouraged, supported, never pushed but never, ever given him the idea that something isn’t possible. It’s not just positive thinking, it’s a blanket refusal to accept boundaries which are not there.

Josh setting off on another 7k run (in the hat!)

Son number two has sadly suffered more with his hypermobility and wears DAFOs by day and splints at night. Each time he grows he loses strength and mobility, is sometimes unable to run, particularly after a school holiday when he prefers sitting in front of a screen than being outside! He has Asperger’s Syndrome and is definitely a law unto himself when it comes to anything he is advised to do. But he has heroes - and one of them is Michael Phelps, the Olympic swimming legend. He loves swimming and learned at a very early age, loving the feeling of submersion. (He learned to swim underneath the water long before he agreed to swim on the top!) So he swims regularly, and we continue to pay for lessons despite the fact he has already won his Bronze and Silver survival medals. It is both his physiotherapy and his relaxation. When swimming he is just himself, with no support, no diagnoses, no limits. It must be very liberating.

Cubs Swimming Gala Relay Winners

Our youngest two are twins and have always enjoyed being a double act! I must confess that having only one (extremely hypermobile!) daughter I was keen for her to try ballet and since son #2 was quite a handful when she started it was easier to have both twins dancing together. They are 8 now and have been dancing for 5 1/2 years, it is both fun and an excellent way of building strong muscles. Without his dancing I am certain her twin brother would be far more reliant on his buggy,which we limit to long days out only. Our daughter has very weak wrists which constantly sublux so dancing which involves her legs is ideal! They both swim too, but we are careful that each child has their “thing” which they can excel at without competition within the family. Even with the dancing both study tap, ballet and “Street” and whilst both enjoy all three, ballet is definitely our daughter’s strength and Street her brother's!

Click on the right hand picture to see what happened when my mini George Samson 
found a new hat in town a few years back - and thought no one was looking!

So how do we fit it all in? 

Well, short of cloning myself I realised I needed a careful plan to manage all this activity. Since rest time is also extremely important I make the “waiting” time a focussed session for the non active children. We read, play games, tackle homework, discuss their day, take a picnic - I plan each evening that we are out as an outing for all, rather than delivering one child and the rest of us hanging around. That reduces sibling boredom and resentment, and avoids returning home with cranky children needing “their” slice of attention! We say “no” to things too. We cannot do everything, and neither can I cannot watch every race, every lesson, every show, but hopefully the children all feel I am involved in what they do and supportive of them. They also all have frequent strains and injuries like most kids who are hypermobile. We have to manage and never give in, taking sensible recovery time and obtaining advice from our physio. You have to listen to the children too - because some weeks it’s just too much, whilst sometimes an initial reluctance is quickly brushed under the carpet and they have a great time. Activity is essential, if we gave in to every ache and pain we would end up with a sheet of “official” exercises to rebuild the muscles neglected and weakened which would be considerably less fun all round. I also fervently believe that since our children have to endure chronic pain as part of their gut disease a bit of supportive resilience is no bad thing. “Getting on with it” is not a bad approach to be honest, we are all in this for the long haul!