Patchwork support

My husband and I both have learning difficulties. We have three
children and our youngest, Richard (not his real name), is three
years old and has learning difficulties too. When Richard was born
he had to have a blood transfusion and a blood sugar check. The
doctors said he needed extra tests because his twin sister had died
at birth. She had a blockage in the brain, and because his head was
small they wanted to make sure he didn’t have the same

When he was three weeks old we were allowed to take Richard home.
He still had a hospital consultant because his head was small and a
scan showed overactivity in his brain. I blamed myself. You see, I
smoked when I was pregnant.

The consultant did more tests. I was on my feet all the time.
Richard never slept. He was put on medication for hyperactivity. It
didn’t help. It was at this point I realised that Richard must have
learning difficulties. The consultant said it was too early to

As Richard got older his hyperactivity got worse. My mate’s son had
attention deficit hyperactivity disorder (ADHD). She watched
Richard playing and said her son had been like that at his

Richard and my youngest daughter had a social worker. I tried to
tell her what I thought was wrong with Richard. I convinced her I
wanted Richard to go to the same Sure Start nursery as my daughter,
who was sent there as they thought she had learning difficulties –
although she doesn’t.

I carried on taking Richard to see his consultant. Eventually, he
decided Richard should have tests for autism. Richard was
hyperactive, never slept, lost his temper easily, didn’t talk much,
and couldn’t follow instructions to keep himself safe. The
consultant decided Richard had autism and ADHD.

When Richard started nursery I told his teachers his diagnosis and
they said “no way”. However, over the year they realised he might
have these disabilities. The head teacher helped me to fill out
disability living allowance (DLA) forms for Richard, which helps as
neither my husband or I have DLA. We lost it because we didn’t
reply to a reassessment letter that we didn’t understand.

I am grateful the school helped with the forms. To get long-term
support for Richard and to understand all the paperwork we need to
do to make sure he gets the best out of life, I have to scrounge
around for help and patch it together from different groups.

I wouldn’t change Richard for the world – I love him for who he is.
But I have never had a break since he was born. I wish there was
better support, that social workers were less busy, and that I had
more one-to-one support for myself. Then maybe I could make sure
Richard gets all he needs.

Tracy Tear has learning difficulties and works for Milton
Keynes People First.

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