Once you have met one dyspraxic, you have met one dyspraxic

Well hello again! It's been a long time since I last blogged, however I have been involved in a few activities increasing awareness of dyspraxia which have taken up a lot of energy so as ever the subject is never far from my mind.

Where to begin, well last week I presented a quick presentation to my colleagues about Dyspraxia and how we as Health Visitors can identify it earlier and start supporting families affected by it. There was so much to say and I didn't want to deliver it from a professional viewpoint because I felt that would make it something that existed in a world where we looked in from time to time. There are also a lot of changes locally within our NHS trust that aim to improve services for the clients and thus I felt that last week was an ideal time to tell managers how it is for families affected by Dyspraxia and how these changes could improve day to day life for them.

The day before the presentation, our local radio station was presenting a piece about "clumsiness" and the Dyspraxia foundation contacted me to speak about it on the show. Unfortunately ( well actually thankfully) I was not at home when they phoned, so the Vice Chair stepped in. The link for the show is here

http://www.bbc.co.uk/programmes/p02jm6p1 The piece starts after Cold Play's song at about 31 minutes.

In the show the Vice Chair, Gill Dixon speaks about the variety of symptoms that Dyspraxia covers and the huge difference as to how people present. She stated that once you have met one dyspraxic, you have met one dyspraxic and this sentence really resonated me with over the last few weeks.

When I tried to organise my presentation, I was amazed at the amount of discussion that exists regarding just the diagnosis. The medical profession tend to refer to it as DCD (Developmental Co ordination Delay) but there are suggestions that this tends to focus too much on the delay in movement skills rather than the emotional and planning aspects too. I also read somewhere that the diagnosis of Dyspraxia is not given by some professionals because a condition that covers just so many symptoms is not possible. I have observed on a Facebook page that I am part of that some paediatricians are now just diagnosing joint hypermobility syndrome instead because they can only give one diagnosis, most bizarre and something I will query because I would hate to confuse people anymore than necessary.

Later on in the week, my son was queried by the Saint and the rest of his teachers because they thought he was dyslexic rather than dyspraxic. His spelling was showing some worrying patterns despite his amazing ability to read. The Saint asked if he could tie his shoe laces and school tie, to which I replied that he could, he could also ride a bike and swim too. As I left, I panicked that maybe he was not dyspraxic after all, which then made me query the whole validity of getting him diagnosed, I had been treating him wrong all these years, never mind the blogging and all the other involvement that I have had with Dyspraxia!

At the weekend, we went shopping, the boy as ever clambered onto the escalator after waiting for the right moment and clung on to the rail for dear life with both hands as we descended. Yup, I thought to myself you are dyspraxic, no doubt about that.

Our local support group also met recently for the first time. Not many were able to make it but those that did, I feel benefitted as did I to be able to share stories and experiences. The children and adults had had a range of symptoms which again aligned with what Gill had stated. There were also sadly tales of the difficulties experienced in getting the vital help and support from health services and education. It still is a very poorly understood condition, unlike dyslexia and this appears to be nationwide. I worry about parents that do not have the confidence to challenge professionals or access services independently and I am in a privellidged position as a Health Visitor that  I can speak up for those that I meet. I have also come to realise that it is not just about getting the diagnosis, its more important that there are strategies to enable the child and family to be able to function and feel that others are understanding around them so they do not feel isolated and worthless. I remember only too well, when we were told about the boy, that  I still did not know how to get him into school and manage his meltdowns. I just wanted that information, nothing else.

As I have stated in previous posts it is the support groups, Facebook groups that often reassure and give you the strength and insight as to how to carry on when you are coping with a meltdown due to a spontaneous change in routine or you just need advice as to where to buy special cutlery from. I really hope that alongside other bloggers and the Dyspraxia Foundation it won't be long before families and people with the condition feel that they are supported and life isn't such a big struggle at times. I am sure that we will get there someday.