Thursday, 28 May 2009

A different type of normal

Where to start…

OK, I was inspired to start my own Blog after coming to the conclusion that 'If Mohammed won't come to the mountain, the mountain must come to Mohammed’, in this case I’m the mountain and Mohammed is every ‘official’ I seem to have come up against, trying to get them to see that SID is real and if no-one will acknowledge it, how on earth will we ever make it a condition that everyone is familiar with?

In the UK it’s unheard of, to the point where the local Mental Health Trust can’t make a diagnosis (even though they concur with you that’s it’s most likely is SID, after they’ve looked at your research, your reasons for thinking it’s SID, googled official websites to find out more, listened to your arguments why it’s not Aspergers) because it doesn’t even appear on some International List of Disorders that they have to adhere to… I refused to accept what they said was the ‘nearest alternative’ diagnosis: Aspergers, it’s not Aspergers! I was even told to tell her school etc. that it was Aspergers, purely because people now know what it is and have a basic understanding of the condition. So for crying out loud… how is SID going to become better known if we just tell people it’s something else?

So what is SID? It’s not Aspergers, it’s not ADHD and it most certainly is not attention-seeking spoilt brats manipulating poorly-skilled parents. SID is a very complicated condition, I think it’s safe to say that no 2 children who have it are ever going to be alike, it’s heart-breaking from a parent’s point of view and extremely frustrating from the child’s point of view. SID is on the Autistic Spectrum and can co-exist with other conditions like ADHD, Aspergers, OCD, AD, PPD-NOS, SAD, Bi-Polar etc. It takes alot of work, from all sides, not just the sufferer, and just as you think you have finally got something under control, something else pops up and bites you in the butt and creates a whole new set of problems. Even strategies that used to work may one day no longer be a viable option.

When my daughter ‘B’ was first diagnosed,
I tried to find a way that a 7 year old could understand it. I used a pasta as an example: when the brain sends a signal to the body, it’s like a message travelling down a long piece of straight spaghetti, it gets to it’s destination with no interruptions or confusion. When the brain sends a signal in someone with SID, it’s like a whole plate of spaghetti, all mixed up, the signal can‘t find it’s way through the tangle of pasta and ends up either in the wrong place or gets lost in the mess. Does that make sense to you?

It’s so easy to feel overwhelmed and defeated with SID, but we’ve always tried to view it as an ‘inconvenience’, if you like, not an all-consuming nightmare. If you try to look at SID as the annoying little side-kick instead of the super-villain, you will come to realise that you’re no different to any other family, it’s just your ‘normal’ is a different ‘type’ of normal…

There’s a wonderful Blog on My Blog List, that I think sums it up better than I could ever do (Pancakes Goes Awry – Friday, October 10, 2008). Please take time to read it, it’s an education.

Blessings till next time
B’s Mum