It's a way of life for us that things are not as simple as we'd like. Recently, things have become even more of a challenge... and not because they've changed (much) but that, once again, we are forced to read *things* in black and white. We should be used to it as over the years, J has been assessed and tested many, many, many times but only a minute proportion of these 'evaluations' have come with a follow up of support and assistance. What's worse is that the 'tests' are all about showing how difficult things are... there's little that's done to highlight the strengths and delightful characteristics J demonstrates on a daily basis. This, in itself, is soul destroying.
Add to this the frustrating postcode lottery that means that a few miles to the West of where we live, things would be so different. This is what is reality for us within the Midlands UK. Suffice to say, where we live has been a disaster in terms of the interventions and assistance J has been offered... and it's now apparent that "because he looks normal" (whatever that may mean) he is even more disadvantaged as 'people' think he *shouldn't* have the severe problems he has.
The catalogue of matters we've dealt with is a long one but does include health and education. We know alot about J and what will work for him but, for the most part, this is not given any credence. Instead of being supported in our goals for him we are blocked by the very people whose job should be to assist. Slopey shoulders abound with no-one wanting to raise their head above the parapet to assist and/or take responsibility for actions (or in J's case their INaction).
It's not all doom and gloom, support and advice has come from charities and other special needs parents. But these are people that really *know* what we face and see the challenges for what they really are. Most of the professionals (or 'service providers' as one parent told me to think of them <- a great tip, by the way) seem to do the bare minimum and, in some cases, actively work to prevent support.
Using the internet is great for linking up with similar people and information finding is easier as a result. But local services should not be about us finding out what there is supposed to be available and then battling to get even a morsel of understanding... and we're not blaming this on austerity or the current administration. This has been our experience all along - since J was 3... a whole DECADE. It's just not good enough and the battle is only ongoing because his problems will NOT diminish (although, of course, we hope they might) and we won't be here forever. It's worrying and wearing. But we will persist.
The support of twitter pals has been fantastic... and the resources we've been able to learn about and access have been worthwhile. But how much easier and better it could have been FOR J if support and understanding, as the default, was offered.
PLEASE don't judge people by how they look. Don't presume to know what's happening in their life... and, if you can, please offer a thought for those who have a less straightforward run at life. One day, in the future, it could be you or your loved ones facing similar challenges and demands.
