So who has been to a tribunal?

I sadly suspect that this will be every SEN parent at some point in their lives, as we fight for access to services our children need and are entitled to.

Call me cynical but when we were refused higher rate mobility and then refused again at appeal, I couldn't help but think that they do this, just to see how many people won't bother to push it - and thereby save themselves some money - and meet their shrinking budgets...... When I got to the tribunal, the representative for the Department of Work and Pensions opened the proceedings saying that clearly our daughter was entitled to Higher rate mobility based on mental capacity (or rather lack thereof). He apologised for the stress this must have put us under. While I'm grateful that he said all this, I was left speechless that such an apparently 'clear cut' case had ended up at tribunal.

So either the decision makers at DWP are incompetent or there is something more sinister going on....

And what happens to the families who are 'on the edge' of coping or don't have the skills to push their case? These are arguably the most vulnerable and the system is completely and utterly failing them - and their children.

Perhaps the government motto for accessing services and benefits is or rather should be "Make it tricky enough and we'll save some cash"

There is a fine but important line between being thorough in assessing needs and deliberately over-complicating things to put people off....

My favourite is that every 5 years or so, I have to fill in a heap of paperwork confirming my daughter still has Down Syndrome and Autism.......... FFS!!!

Anyway, my top tip should you find yourself going up against a decision? Contact a charity for free legal advice. For us, the Down Syndrome Association were amazing (the guy from the DWP complimented their support work).

Good luck and stay strong x

Bitter Sweet and a blogger's responsibility

I've been quiet. My absence has been due to an inner turmoil about where to go with this blog and what responsibility I have.

On the one hand I want to be positive, promote all the good bits and talk about all my child's hard earned achievements.

On the other hand, I want to truly get people to understand how complex my beautiful daughter is and the daily challenges and future worries she brings.

And on my other other hand (didn't you know us parents of SEN kids, get given extra pairs of hands to help with all the extra chaos ;o)!), I want to provide optimism for other parents with dual diagnosed kiddies - I worry that I can't always do that, so sometimes opt for empathy instead.

The last worry about ensuring I provide hope but not false hope, is my biggest fear. I sometimes think 'bitter sweet' is a good term for life with Little I.

She brings such joy with her smiles and giggles, she brings glimmers of hope when she spontaneously signs and sometimes tries to say the odd word, but then it is lost..... leaving an underlying sense of sadness for those around her.

Then there are the practical considerations. My child has no safety awareness and a very high pain threshold with sensory seeking tendencies that can lead to dangerous situations. I joke about quick reflexes and constant 'fight' mode, but in all honesty - it's sometimes just plain exhausting.

Take comfort. I take comfort in the fact that Little I, for the most part, is a happy, smiley and despite of her autism 'engaged'. That said, her engagement is still vastly different to a child without autism - but you find joy in these small mercies.

Of course, every disability is different and for some children a life with work opportunities and independent living is totally achievable. Public perception needs to be continually challenged, to ensure these kiddies have the best opportunities.

Then there are kiddies like mine, independent living will never be an option, but keeping her safe, happy, engaged and thriving in her own way, is just as important as it is for any other person.

So, how do we retain our hope, energy, drive and optimism against the sadness, exhaustion and worries for the future?

........... answers on a postcard..........