Labels?!

Lets think about labels right now - ASD, SPD, ADHD, ADD, ODD, CFS, ME, Autism, Aspergers, Fibromyalgia, PTSD and so many others for all ages, male and female, all races.

Looks complex and baffling right? It was to us when doctors started throwing different things at us and family/friends kept asking us why we were trying to get R labelled. So many bad connotations to being 'labelled'!

I sat there thinking I was a bad parent for pushing the doctors into giving us answers, to getting R the help he so needed in school and at home - complex needs is blooming expensive you know! As time has gone by and more labels were added to R and to me as well (yes I have extra medical needs as well), the more I understood that for schools this meant there was more money pots they could access to allow for one to one teachers, fidgets etc and for doctors to understand what had been tried before or what tests had already been done.

Although to us, these 'labels' were actual diagnoses for R, and meant there was a better chance of getting the help WE needed at home. To have access to grants and funds, which we needed to apply for, to although us to buy R weighted blankets, sensory products, even a trampoline! So far he's got an iPad, which we bought second hand after trading in games and DVDs to raise the money.

Everything else - it's on a wish list or my to make list. Never to be bought or made as finances will never allow, those grants and funds we thought would open to us for application? Nope, not disabled enough!

Honest that's the real actual reason we were given, by letter - not disabled enough and is mainly behavioural therefore does not require our assistance! What more could a child or family need to put forward to be classed as 'disabled enough'?

As I have pointed out in a previous post R has ASD (autism spectrum disorder), SPD (sensory processing disorder), partial 3rd nerve palsy, no 3D vision, epilepsy, SCD (social communication disorder) and a chromosomal deletion - add to that my own Fibromyalgia, ME (CFS or chronic fatigue syndrome) and depression, and still we are classed as not disabled enough.

To me this terminology of labelling someone to help them access support has pros and ere are days when I just write it down and think 'Why?' We haven't received any help that has been about helping us as a family.

Then there are days, especially those when we meet with R's school, that I sit there and think, 'Finally someone understands what we have to go through and they actually want to help!'

So for those who think us parents are ALL about 'labelling' our kiddos - remember we don't choose for our kiddos to have these issues, for us as a family to struggle everyday or visit the hospital every months (for some every week).

For those of you who are struggling with everything, remember this - YOU are doing everything possible for that/those children, keep up the good work mummies and daddies!

With Empathy and Understanding comes Acceptance!