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Tracy Tear says she has to piece together help in caring for her young son with learning difficulties.

Thursday 30 September 2004 00:00
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 problem.

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 tell.

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 age.

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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