Sunday, 13 September 2015

Dealing with Disappointment and our JHS Journey.

Not only are "invisible" disorders / conditions difficult for others to see,
 believe, understand and accept, it's also hard for the person suffering (in this case my child) to keep dealing with the disappointment of missing out on a lot, on top of the pain they go through and all the effects of their conditions. 

For years we adjusted to Aspergers and the hurdles ASD put in front of us. We learned how to manage, how to help, how to avoid, how to cope.  We were able to push boundaries and assimilate into everyday situations. We are at the point now where I get those proud mother moments when others comment that they had no idea he has an ASD as he fits in with all the other kids well. All our years of therapy, all our supports and preparations each day help get us through and mean that day to day there is not much my son misses out on. By no means is my son free of ASD or 'cured' (I HATE that word by the way), it's a life long way of life and a life long condition based on a different way of being.

I honestly thought that ASD was the hardest thing to overcome for him and for others to understand but I think his other conditions are harder especially as he is getting older. 

My son's multitude of other 
diagnosed conditions include quite severe
Joint Hyper Mobility Syndrome (JHS)
and a bleeding disorder still in the diagnosis process which like everything
 else usually takes a few years.  

Now many children have hyper mobile joints. Many. They are simply 'double jointed' and more flexible than the average person. It can be fantastic for kids who want to be gymnasts and dancers.  They do not develop any problems from their loose joints. In a way it's a little like the Autism Spectrum in that there is a scale of severity. This is simply called Joint Hypermobility, it is not the syndrome. 

If you wish to find out if you or your children have hypermobile joints, click here to view the Beighton Score test.  If you score 4 or more out of 9 on this test then you have hypermobile joints. My son scores a 9. He is also missing some connectivity between certain muscles to allow him to do independent movements particularly with fingers. Many children on the Autism Spectrum have hypermobile joints. This can be evident by the characterised 'W' position sit that many ASD children do. 

Joint Hypermobility Syndrome 
is where problems arise from the loose joints. Chronic pain and other symptoms including extreme fatigue are two main characteristics of the Syndrome JHS. Most with JHS will go on to be diagnosed with Arthritis and degenerative joint damage. Other things to note is that anaesthetics do not hold as well for JHS patients.

My son is double jointed and flexible just like those many, many children, but has the chronic problems as well, hence his diagnosis of JHS.  Because the issue of hypermobility is fairly common, people cannot understand or see that the syndrome exists or how it differs from their child or their friend's child who has Joint Hypermobility.

How does JHS impact on my son's body?

 The arches of his feet and his foot structure 'collapse' and they don't perform their roles as they should and look like classic 'flat feet' and rolling in ankles. He wears orthotic shoe inserts to keep his foot structure in a more correct functioning position. Even with this, he struggles to run.  He shuffles and has no spring in his step.  His knees sustain high impact joint damage and he gets pain similar to an aging adult with arthritis. A fall where he lands on his knees can result in dislocation. The average person and even a 'double jointed' person can pick up a bowling ball and bowl a game with no problems. My son can dislocate his fingers picking up a bowling ball and when he goes to bowl can bend his arm backwards at the elbow causing pain. He gets shoulder pain and can dislocate using climbing walls and monkey bars. He gets back pain and even chest pain. 

The only visible clue you might have looking at my son, that anything is wrong, is his awkward clumsy walk or shuffle run, his lack of muscle tone appearing weak, poor posture and very soft pliable (baby like) skin. 

What you don't see is his fatigue. He gets very tired, very quickly and easily.  One of his doctors described it as being like living with Chronic Fatigue Syndrome every day, from the minute you wake up.  You don't see the cramping of his muscles which occurs due to the constant over stretching of his muscles. You don't see that it can keep him awake at night further exacerbating his fatigue. You don't see the pain he suffers when walking for a long time, which for us can be 10 minutes at a shopping centre let alone an outing at a theme park for example. We have a wheelchair we take with us to help. A child over a certain age and size can't be carried, put in a shopping trolley or a pram. You don't see his relief at being able to sit rather than walk.  You also don't see his embarrassment at having to use the wheelchair, particularly if we are around his friends.  He will push himself to the limit and collapse at home to avoid looks or questions or pity. He also resists using the neoprene braces for his knees, elbows, ankles and wrists when out in public.  He needs them when he is hurt but doesn't like others to see them.

You don't see his disappointment when he knows he can't do what others can do or misses out on an outing. Regular 'kid' things my son either cannot do, shouldn't do or struggles to do: 
  • Jumping - this causes joint damage and pain. So no trampolining centres, inflatable worlds, backyard trampolines, skipping, etc.
  • Climbing - this causes shoulder pain and dislocation risk. So no climbing walls, monkey bars, hand held flying foxes, no pulling himself out of a pool with the hand pull type ladders, no climbing trees or fences, pulling himself up onto a horse. Not only does he lack the strength to do these, he is in pain trying. 
  • Riding a bike - the pushing of the pedals is painful and exhausting. Riding a scooter isn't easy either. Pushing with one leg means one leg is getting constant impact with the ground and one leg is bending to allow the other to touch the ground means on a bad pain day that it's not an easy activity. He rides a V-wing type scooter that requires no pushing or touching the ground. 
  • Swimming - the constant kicking of the legs and shoulder/arm rotations (think freestyle, backstroke, butterfly stroke) causes pain and a lot of cramping. Cramping when in water can cause drowning. My son suffered cramping in the water from a 20 minute swimming lesson. He has learnt to swim and float and how to get to safety but he will never be a 'squad' training swimmer.  We do hydrotherapy instead. Even trips to water parks can prove hard. As waterslides are found at the top of many flights of stairs. Climbing these steps all day is very painful.  
  • Bowling - we use a modified / disability bowling ball and he can only cope with one game. 
  • Running - this is very difficult. Most children's games and playing involves running. Whether it be a game of tag, kicking a ball in a football game or seeing who gets to the swings first, they all involve running. My son shuffles at best, is slow, always loses the race or game and is exhausted, puffing, frustrated and upset. Particularly as it happens time and time again and was the cause of bullying at one school.  You don't tend to get called a loser if you aren't jumping on a trampoline with others, but come dead last in a running race and you get called a Loser every time and it's heartbreaking for a child. Add in an uneven surface like sand and the problems get a lot worse. So the beach is not a fun destination either anymore. 
  • Fine Motor Skills like Handwriting, using scissors, drawing etc.
  • Sitting for long periods.
  • Standing or walking for long periods.
  • Throwing, Catching, Kicking etc

If you take all these activities out of a child's scope of play, it's hard for them to maintain friendships. Other children do not see anything physically wrong with your child. They aren't confined to a wheelchair so there is no physical cue and reminder that their friend cannot run with them in a game. Children don't really understand when a another child says 'I can't run' or can't run fast or has sore legs. I don't place any blame for this on any child or any parent, it is no ones fault at all. It just is what it is. I am usually the bad guy and the nagging mother, reminding my son to slow down and stop trying to run so he doesn't end up in a lot of pain that night. But at the same time I see his desperate need and want to fit in with the other children playing so it's a difficult balance. 

For us, everything is compounded by the fact that we deal with a bleeding condition on top of this. In summer the bleeding can be a daily thing. We need to stay indoors in air conditioning. Blood loss makes anyone fatigued so on top of his 'normal JHS fatigue levels' it can leave him couch bound wanting to sleep all the time. Summer is when all his friends have a lot of fun. Water parks, outdoor park play, riding bikes, etc. Holidays with lots of time to go out and have fun. We miss out on all of that and through no fault of anyone, friendships drift over those 6 months. Depression often kicks in as disappointment grows at missing all the fun. It can't be helped but it's something we aren't getting over like the issues we faced with ASD. 

Last week my son fell when riding a scooter. He did damage to his knees as well as a little graze on each. To any other child, they would be back to having fun by the next day. For us it means much more.  We had to visit the Dr to check his knees as they both swelled and had an odd shape. To keep from further damage he has to wear his knee braces for a week.  The grazes don't heal well or quickly and easily turn nasty due to his blood issues. Wearing the braces made the sores worse so we have infection issues to deal with as well. One thing impacts another which makes another thing worse. Nothing is easy and everything feels like a drama. Then my son fell again, a few days after the initial fall. Everything is worse and the cycle starts again. People can't fathom how a simple fall and graze of the knees can turn into such a circus and prevent us from doing things for weeks. It's hard to explain without sounding like a drama queen. What's harder each time something like this happens, is dealing with my son's tears when he then misses something he was looking forward to (like an outing this weekend). 

I guess we will get past this too, learn to adapt and now that my son is 10 maturity is helping him not get so frustrated or blame himself for his inability to do as much physically, but the disappointment is hard to see on his face so often. 

Where we live, the weather is warming up and summer is practically here already. This signals the end of our social, active and busy part of the year. It's the start of my endless apologies season which sees me have to decline most invitations to fun play events that are usually all outdoor, physical and beyond my son's capabilities. I hate each time that I have to type our reason for not coming along. I honestly never thought we'd be 'those' people who disappear for months at a time, especially since we managed to get through the Autism issues relatively ok.  But that's us. And that will continue to be us for years and years to come. I just hope that as my son gets older and more mature, and the friends he makes during winter get older and more mature, that friendships survive the absence periods better. For now though, dealing with disappointment and depression seems to be a very large part of this journey we are on and one I wish would vanish. 

1 comment:

  1. As the Mum of a young child with JHS, I just want to say I hear you and I understand. xoxo