Friday 22 April 2011

Can't Walk? Won't Walk?

From the time he was 9 months old, I learnt very quickly with Joseph that there is what Joseph can do and he won't do. Joseph didn't sit unsupported until he was almost 12 months old. Then one day, the 23rd April to be precise, he just sat. No falling, no toppling, sitting comfortably. Two days later he sat playing with toys in a museum. On the third day he sat unsupported in the bath. For half an hour. You can't tell me he couldn't sit before the 23rd April, I am sure he could, he just wouldn't until he could do it reliably without making a fool of himself.

Crawling was exactly the same. He commando crawled for ages, then in July 2010 at the grand old age of 14 months, we were on holiday. He was commando crawling outside, realised his tummy was being scratched, and he decided to normal crawl.

He didn't pull to stand til 15 months, and moving around took a lot longer.

Now this delay in meeting milestones has alarms ringing in our consultant's head, because it's one of the markers of Cerebral Palsy,(CP) in isolation it probably just means that other things are on Joseph's priority list and his prematurity means that he will be delayed, however some conclusions have been drawn by her, that fortunately are not shared by the two physiotherapists in the two countries we have seen one! The consultant did appear slightly miffed that Joseph doesn't have Global Developmental Delay. She tried to get him to walk with her hands "No walk, no no NO" said Joseph - thanks little man!

Their conclusion, which is the same, apart from the fact these two therapists have never met, is that Joseph has some hypermobility in his joints, which is impeding his ability to bear weight and to walk. Again, this can be sign that something is wrong, often in CP what can start as hypermobility then goes the other way, into spasticity and rigid muscles. They are both of the opinion that Joseph's hypermobility is just due to his prematurity and as he starts to bear weight more, will settle down.

It is difficult for me at the moment. I am going into that "this time last year" syndrome I had last year, and possibly will every year, that I will blog about in due course. But in a nutshell, that awful sensation that this is all my fault. That my inability to carry Joseph to term, in a non toxic environment, has made his life difficult, more difficult than it should be. Our consultant isn't great at differential diagnosis. Once she has an idea in her head, that's it. Afterall Joseph was the child whose stomach was so badly damaged, that he would never eat and would be tube fed for life. I also had to fight against aggressive tests when Joseph was experiencing "seizures", that were not seizures at all, but that's another story. So trying to tell her "look, yes I agree it could be CP, but I think its just down to his prematurity" is not working.

I am finding it wearing trying to fight for my child. Deep down, if I ask myself, do I think he has CP? My gut instinct is telling me he absolutely does not, that he's doing what he always does, and waiting for his moment to shine. And I'm not ignorant about such things. I worked with adults with disabilities when I first had a job after university. For five years. And four of these chaps were premature, born in the 1950's and 1960's when the treatments at birth were not as good as they are now. All four of these chaps had CP, in varying degrees of severity but all were wheelchair bound.

Joseph is doing steps, its just not at all his preferred method of getting around. However, yesterday, after crawling all over a shopping centre whilst we were having morning tea with a good friend of ours, he then turned it on when we met my husband at his office. Joseph happily walked (although he looked like he'd had a couple of pints!) between desks, and generally had a ball.

Joseph's consultant does not find it significant that Joseph comes from a lengthy tradition of late walkers, I didn't walk til 2 and a half. My husband didn't walk until 4, but he had underlying issues. I think its very significant personally.

I feel a bit upset because I always said I wouldn't at all be concerned until Joseph was 2 corrected, which isn't until August. I did ask the consultant to hold off, but she refused. So here we are, going through appointments, fitting for orthotics, and I think, wasting NHS money to cure a problem that doesn't exist.

So please, Joseph, when we attend orthotics in two weeks, then, my little man, could be your time to shine! And save the NHS some much needed cash!

EDIT: Joseph can read - I wrote this at around 8am this morning. At 2pm Joseph walked from our local supermarket to the pharmacy and back again. Without holding hands.

1 comment:

  1. Well done Joseph for walking to the pharmacy from supermarket :)

    My daughter hated when we gave her praise when she started taking her first steps, she would stop walking.

    Hope all goes well at the Orthotics x