Saturday 15 March 2014

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!


Beau Twins


 photo ActiveFamily150x150_zps28e829a4.jpg

39 comments:

  1. Wow, having twins doing multiple activities drove me crazy. I don't know how you manage with 4 children - but keep going, all this effort is obviously working wonders x

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  2. It sounds like hard work but you seem to have it all in hand...supermum! Well done everyone

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  3. I just have the one and it's crazy the amount of stuff he does ! you are super

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  4. Thanks for sharing your story. I always marvel at how people manage to fit things in! Amazing x

    I recently posted: Steak, Leek + Guinness Pie

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  5. You certainly have your hands full, well done for juggling so successfully x

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  6. Wow, it is humbling to read other people's stories and about their complex issues and how well they manage to cope with everything. I believe I wouldn't be able to juggle half of what you are, well done! #BlogClub

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  7. Having 4 children as well I understand what a juggling act it is.
    My eldest has Aspergers, so your 'law unto himself' comment made me smile. Absolutely spot on!
    You sound very well organised though. If you're like me you have notice boards and lists everywhere to keep track of who is where and when!

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    1. I guess this is how it is when it "works" lol!!

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  8. I too have a son with hypermobility so understand completely the impact it has on their daily life, but you're kids are obviously thriving so it sounds like you've found the right balance for them. I find it hard enough organising two so am in awe of you for managing four and all of their different activities xxx

    Vikki
    Love From Mummy - UK Parenting Lifestyle Blog

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  9. This just goes to show that Mum's will move mountains for our children. Exercise is so important for all children and I found this really interesting.

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  10. I like the idea of using the 'waiting' time so productively. I just have the three and struggle to fit anywhere near as much as that in- well done you!

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  11. you sound like you get a lot done! although i can imagine it doesn't feel that way from the inside sometimes. i agree with everyone, you sound like you're well organised and put a lot of effort in.

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  12. Wow. You are incredible, and so are your kids :)
    I love how you plan every outing as a time for everyone and always thinking of all of them and not jet the one participating in the scheduled activity. I think that, together with each of them having their own thing, is the key to success.
    Hat's off to you :)

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  13. Yay! Well done on the swimming award! I cannot wait until Isabella is old enough to start ballet lessons :-) x

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  14. I need to get mine into some more sports and activities, I find it quite hard at the moment with not being able to drive and so much time already being taken up with the actual therapy appointments, but its really interesting to see how much it has helped yours and that makes me keener to get something sorted out for mine.

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  15. You have so much going on it;s really interesting to read how you manage it all. I love the photo of Josh setting of for the run - to keep trying even though having the pain issues is a real inspiration x

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  16. It is great that you are taking them to all these classes and that they are getting the exercise they need. And well done to your son on his swimming achievements. Michael Phelps is a great role model to have :) x

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  17. Wow, it sounds as though you do an incredible amount! And being so responsive to the different needs of all your children - it's very impressive. Exhausting work, I'll bet!

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  18. Wow what an amazing post, you must be so busy! It's wonderful they are all doing so much and the right kind of activities too. Such an interesting read :)

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  19. This is very inspiring, you have a brilliant attitude with regards to not letting perceived boundaries stop you all. You are a wonderful Mum who is taking care of her children's needs very well indeed.

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  20. Love that they all have their own 'thing' - top marks to you for keeping it all up! Hypermobility here too, so it's good to hear how others manage it x

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  21. That's a lot to keep on top of but I love your approach to efficient time management, particularly using the 'waiting time' in such a productive way so that the others don't feel resentful towards the sibling who's attending their 'thing'.
    I also clicked through to find out more about EGID, I'd not heard of it before - it seems to have a few similarities to Ehlers Danlos Syndrome (EDS). Thanks for the education.

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    1. Yes, they think we are EDS too. We also have several autoimmune diseases which again seems quite common. We are currently part of a genetic research project into the phenotype. x

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  22. You work very hard to ensure your kids get to join in with activities - I struggle fitting everything in with mine but they al do swimming lessons. I would love my daughter to do ballet

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  23. It sounds like you are doing a wonderful job and you must be seriously organised!
    Jamster isn't remotely interested in sports or clubs, bar climbing, yet Minxy is a very busy bee with singing and cooking activities x

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  24. You manage to do so much, and work so hard with your kids. It's wonderful that you manage to do it, and I like the way you use down time and waiting around time so productively.

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  25. That sounds incredibly organised, but with 4 kids I guess you to be. I take my 2 swimming but only occasionally remember to bring books, the rest of the time I normally end up chatting!

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  26. You are such an inspiration - fantastic time management and very happy kids - brilliant stuff xxx

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  27. I can only imagine that at times it must seems like an impossible task to manage it, but I am sure it is all well worth it.
    At least your kids want to do something after school... I know some that have zero interest, nothing interests them whatsoever

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  28. You're so marvellously organised. You're doing a fab job!

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  29. This is really encouraging for me to read. My youngest is hypermobile and is often injured but luckily he loves football so that's what keeps him active. His biggest issue is with writing as his fingers are hypermobile. He's learning to touch-type though so I hope this will help him through his school years.

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    1. We have this issue too - although only one of mine has low tone and the others overly high muscle tone, it's still a big problem. "Finger Gym" is really useful http://www.finger-gym.com and also this programme http://www.amazon.co.uk/Write-start-Programme-Perceptual-Handwriting/dp/1855032457 . Message me if I can help further? x

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  30. You are super organized and i sounds like your children benefit so much from that. I try to use the same approach regarding the children's clubs and make as good use of the time waiting with the others as I can, maybe to do homework, or share a story. Juggle, juggle, juggle!

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  31. This was a really interesting post to read, you sound amazing and I don't think they would ever feel like you're not involved enough - it sounds like they do loads and you're there every step of the way. I'm off to read about EGID now! x

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  32. This is so interesting. It really is a balance between what you need to do for the beast and grabbing life with both hands. I love your idea of structured waiting time with the other kids. I'll be employing that myself from now on. Hayley x

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  33. Kate this is so fantastic, although i dont have the same conditions at your children i do have medical conditions that in fact make it painful for movement and exercise but i find it a vicious circle if i dont exercise at all i cant concentrate and i become irritable so its a must for me.

    I do have to say massive hats off to you for juggling 4 childrens social diaries ii struggle with just Beths and my own!

    Thanks for linking up with #ActiveFamily its so fab to have you sharing there x

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  34. I think you are amazing for managing to fit in all your different activities with all your children. I can't imagine how hard it must be before taking into account their conditions . I struggle to organise myself and my daughter for an evening run/jog/walk to the park most nights #Active Family

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  35. Well done on juggling everything and well done to your children on being so active despite their medical conditions, as adults we seem to fall into the trap of I can't do this because I am tired or ache. I should know I am one of them, you do incredibly well and I salute you #activefamily

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  36. It's incredible how you can manage with a "just get on with it attitude" my mums always taught me this. That's life. But huge well done to you. Having the twins, being a single mum and general life is calm enough for me. I'd love more children but not sure that'll happen. Great post and I love your focus for your children. I've got the girls signed up for lots of activities. I can't wait. We are very social and I totally agree with you, sports brings the social aspect into play. Thank you for linking with #WellbeinhWednesday

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Many thanks for taking the time to comment, I really value your responses.

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