Friday, May 10, 2013

Bikes and Braces

Some of this is a bit of a repeat for those of you on my Facebook, but I need to do a proper update here :)

So first of all, Bikes.  Like most children his age, Joshua wants to ride a bike.  Running my own Family Day Care, I don't have a shortage of bikes for him to try, but none of them seem quite right.  Of the six different tricycles I have, none of them seem to work for him.  The main problem with the trikes is that the pedals seem to be too far forward for him to reach and have enough power to actually pedal.  He doesn't know how to pedal yet, and it will take time for him to learn, but he can't even start to learn to pedal if he can't get his body right on the bike.  So, at the suggestion of a friend, Joshua and I went to our local dump shop (yes, that is a shop at the rubbish dump!!) and had a look at the bikes there.  I ended up getting him a regular bike with training wheels to try.  I thought that it might be better because the location of the pedals is different and may be easier than the tricycles.
As you can see, he does look quite pleased with our dump shop purchase...

However, it turns out that this bike wasn't quite right either.  The pedal placement also seems awkward on it...  especially for his right foot...  like they are too close this time, instead of too far away!  He has a bit of internal rotation of his right leg, which combined with his spasticity, just make it really hard to get his right leg on that pedal properly.  I tried using velcro to secure his feet to the pedals, but it clearly wasn't comfortable for him and made him upset.
So it left me feeling quite bad for him.  He has been showing so much interest in wanting to ride a bike but I didn't know what to do to help him meet this personal goal of his.  I wasn't sure if I just needed to give him more time and he will figure out how to use a regular bike of some sort, or if I needed to start looking into getting him an adaptive bike of some kind.   When we saw a visiting Occupational Therapist last year, she had mentioned we could use our Better Start Funding to get him a special trike, so the option is there, but I obviously don't want to mess around in getting him a special bike and then in 6 months time he manages to master a regular one, it would be a bit of a waste really.
So the other day I had a talk to his Occupational Therapist here about it.  I asked her if they had any bikes there that he might be able to try.  I told her I wasn't having any luck with the regular ones I'd tried, and that I wasn't sure if he just needed more time or if he does need a special bike, so if we could try one that they have, I'd have a better idea if that was the answer to my problems or not.
She told me that yes, they do have some bikes he can try and she will incorporate it into his sessions.  She told me that it can be really hard to find the right bike for our kids, and that even with the ones they ordered, they ordered them thinking they'd work well for most of the kids they see, but it hasn't turned out that way, and that getting things exactly right for an individual child can be really tricky.  She says she thinks he might need a special bike and that the Variety Club (a children's charity) are really good about funding bikes for special needs kids.  She said that although he can sit on a bike without support, he is probably putting so much effort into keeping himself upright that its then just too much to try and incorporate his legs and pedalling into the equation as well.  But that a bike that supports him better will make it easier for him to use his legs and learn to pedal.  Which makes sense I suppose.  So it is something we will start to look at in his therapy sessions, and go from there.  So its a bit of a *watch this space* when it comes to bike riding!

Another thing that is coming to the forefront a bit now is that Joshua has poor core strength.  This hasn't really been a focus until now, I suppose because other more functional things have been our priority...  things like using hands, learning to walk etc, were more desirable goals.  Now that he is walking and using his hands, it seems it is time to start working on trying to improve the quality of those movements, and according to his physiotherapist, all of his movement problems can be related directly back to poor core strength.  When Joshua walks, you can see his torso is slightly hunched over, his right leg rotates inwards, and then his right foot is also not nicely flat on the floor.   In my last blog post, I described the orthotics, or SMOs, that Joshua was prescribed to help his foot.  We got them, and they haven't been great.  I wasn't happy with them at all because, firstly, they were yet again damaging the skin of his foot, and secondly, they were causing him to toe walk really bad on his right foot.  He doesn't complain about wearing them at all, but he didn't look good at all.  Even after sending him to day care wearing them, and then sending him without, the day care staff were commenting to me that his walking was better without them.  Its taken a little while though for me to be able to get the Physio to take a look and tell me what she thinks.  She agrees that they are not good.  And yet again, I'm basically left dismayed that we just get crappy crappy braces made here in Darwin.  Seriously.  It is all I ever hear...  how they braces Joshua has been given are so crap compared to the good ones that get made elsewhere.  She said they were too wide at the front, they don't conform to his feet enough and do not offer any support for the arch of his foot which is what he really needs, and the toe walking is of course, no good at all.
She is going to call the Orthotist and set up another appointment for him to get new braces made.  She will come along this time and 'supervise' the casting to make sure that she casts him in a way that will make sure the final brace will support his natural arch and tell her to make them better fitting.  So...  new braces.  She also said she thinks he might be better off going back to a full AFO on his right leg and just keeping the small SMO on his left leg.
What she also said, is that all this comes back to his core strength.  As you probably know, muscles are all connected.  When a muscle tightens, there is generally an opposing muscle that relaxes.   Joshua is a bit tight in the hips and his leg rotates inward.  But she says if his abdomen and glutes were stronger, then his hip would be pulled outwards more.  You can try that by putting your hand on your hip and tensing your bum muscles.  You will probably notice that when your pull your bum muscles in your hip rotates outwards slightly and then when you relax again, your hip goes inwards again.  This is a lot more exaggerated in Joshua, but she is saying if we can strengthen his abs and glutes, this will naturally work towards pulling that leg back into a more normal position, and that will all basically flow on down to his foot.  She also says that even with his fine motor stuff, she feels the core strength is affecting him, like that he keeps his arms locked to try and stabilise himself and then once he tries to move his arm he loses his stability and then the activity gets too hard so he gives up and wants to move away or throws the activity in frustration.

So thats it basically, she wants us to work on his core strength and says if we can improve that then we will see flow on improvements in all areas.

In other small news, Joshua finally had a meal time assessment done a few weeks back.  There were no concerns.  The speech therapist said he struggles most on mixed textures (e.g., cereal and milk together in the same mouthful) and that he coughs a bit when he gets a mouthful of different textures, but nothing to really be concerned about.
We are also starting to see Joshua saying a few new words, and I feel that we are right on the verge of a big speech explosion, so fingers crossed that I will have many more positive things to report when it comes to speech in the coming months.  Today I encountered my first particularly awkward moment when we were at the shops and I was buying Joshua yet another sippy cup...  we really need to get him off bottles...  I did it not long after he turned 2, but we've regressed again...  and he has been shocking at biting all the bottle teats or soft silicone straws or spouts on other cups so I was really wanting to get him a cup with a hard spout that he couldn't bite chunks off and that he'd accept for his milk instead of a bottle...  Sadly, the shop I went to didn't have much of a range so I basically chose the only cup there that I thought was suitable... and weirdly, even though its a bit of a dumb cup in my opinion, he seems to really like it.  It has cars on it.  He sat holding it in the stroller and saying car, car and then a woman in front of us at the check out apparently thought he was saying "pow pow" so I clarified he was talking about the cars on his cup, so then she looks at the cars and says "show me the cars, oh yes, there they are, what colour is that one?"  Yikes.  I guess that is a sort of normal question to ask a child of his age, but its not something he can answer.  I kind of wondered for a minute what I should do.  After an awkward silence she ended up answering her own question...  maybe she just thought he was shy....   LOL  So he cried when we had to give the cup to the lady at the checkout, and he cried again when I took it from him to buckle him into his car seat, so he seems fond of the cup.  He also accepted it tonight with some milk for bed.  He didn't drink as much milk as he would have from a bottle, but thats fine, the same thing happened last time where the cups naturally caused his milk intake to drop and his food intake to increase....  but he drank some milk from it without melt down of the century, so maybe this cup will work...  

Joshua's birthday is soon....  10 days until he turns the big 3.  Keep your eyes out for his annual Birthday video :)