When people don’t believe you

The form was almost 100 pages long and it took me hours to complete. I gave honest answers to every question carefully thinking how best to word it then set about gathering the evidence from professionals to back up my answers. After photocopying everything I sealed the envelope and posted it back recorded delivery.

Then I waited and waited.

If it wasn’t for checking with Royal Mail I would have never known they’d even received the application!

Weeks passed before I heard anything back.

The first correspondence was a letter to arrange a home visit. My daughter couldn’t look at them or communicate to them at all due to her disabilities. I wasn’t upset though as I naively felt this simply confirmed what I had written on the application and what the professional evidence supported. I heard nothing more again for months and months.

Finally, almost six months later, a letter arrived detailing what a stranger decided my daughter was entitled to. I read it in disbelief. While some of it was true there were areas with clear discrepancies and errors and I sat the letter down wondering what to do next. I felt let down, that once again as a parent people just weren’t able to see what I see daily.

I know my child better than anyone else yet far too often I’m not believed when I share the reality of her life.

So many of her disabilities are unseen. So many of her struggles are in areas no-one else ever sees like eating, dressing, personal care and sleeping. There are no professionals in my home witnessing her anxiety at the suggestion of her leaving the house, or witnessing her obsessive hand washing for fear she catches an infection. No-one else sees the way she inspects the few safe foods she will accept to make sure they are ok to eat before nibbling them then pushing the plate away. No-one else lives with her rigid routines or anxiety.

It’s not always possible to have every aspect of someone’s day to day care confirmed or written about in reports. So many autistic children mask at school or hold it together in public only to explode at home. Few seem to see or understand social struggles, vulnerability or naivety.

Parents are the real experts on their child yet far too often our opinions are dismissed and disregarded.

I took a day or two to decide how to proceed but in the end I didn’t take things further. I doubt in this case it would have made any real difference to the outcome and would only have added to our stress and workload.

But the shock of not being believed hurt deep. The assumption that parents are exaggerating or lying or cheating the system is so wrong. We aren’t all out there just wanting money.

We live with our children. We know them better than anyone. We are the ones fearing for their future, lying with them when they can’t sleep, drying their tears when they don’t understand what people say, dressing them, washing them and struggling to find help for them.

The least a stranger reading a form could do is believe us. Is that really too much to ask?