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Viewpoint - letter from a lone parent with an autistic son
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07/06/05
From Together 5: Dear One Parent Families,
Your article on disabilities in one parent families (Together 4) was such a relief to me. It was reassuring to find that I am not the only mother who has struggled with a child with special needs.
Before my son was diagnosed as autistic, life was miserable for me. I kept asking for help, reaching out only to be told that 'things weren't that bad'. Sometimes I was made to feel that I was a neurotic mother. I felt that since I was a young mum (I had my daughter when I was 18 and my son at 20) I wasn't taken seriously.
I struggled on with no support and after years of living on the poverty line with no money to entertain my children, poor housing and no recognition of my son's condition, I had a nervous break down.
I was offered anti-depressants and sleeping tablets which I was against taking. It took me a long time to get myself well again. My son's school suggested he see an educational psychologist, who referred him to an occupational therapist who diagnosed him as autistic. It was such a relief to have some understanding! Now we could begin to get the support we very much needed put in to place.
Although my son was moved from a mainstream to a special school, we got a great social worker, we had family therapy, I applied for Disability Living Allowance and Carers' Allowance and life became a bit better. Now I am able to support my son with a greater understanding of his condition.
I feel incredibly lucky on one hand to be financially better off (on benefits) than other single parents on benefits, but this doesn't take away the day-to-day stress that comes with being a lone parent of a disabled child.
And the complications around trying to get back to work are unbelievable. The first time I tried to get back to work my lone parent adviser at my local jobcentre didn't have a clue about what benefits I would still be entitled to as they had never come across a single mum with a disabled child who wanted to work!
And to make matters worse, we then discovered that if I earn over a certain amount of money (no matter how many hours I work) then I lose my son's benefits as well as the Carers' Allowance.
So although I may want to work during school hours when I wouldn't be caring for him anyway, I am restricted to having to earn less than £79 to ensure I do not lose my Carers' Allowance but have to work 16 hours or more to qualify for Working Tax Credit.
And then there were issues with childcare for school holidays. Registered child minders for children with special needs are very hard to find, their rates are higher than normal childminders' and they rarely have free places. I only leave my son with family and friends as he would not cope with being left with someone he doesn't know. This leaves me totally stuck when it comes to school holidays.
I have decided to set up my own business. I went to my local jobcentre and signed up for their business training course, which allows me to be supported while setting up my business. They have grants available if you need them and most importantly I have a six month period of 'test trading'-- where I can stay on all my benefits while I have six months to build up the business. After that I should have an idea of how viable my business is. The money I have earned (but not spent) over the test training will be reinvested in the business.
So far I am four months in to my test trading, and while business slowed down for a while around New Year, it picked up again and I'm not worried - I know I will have tried and if it doesn't work out then I haven't lost anything! And the best thing is I can work around my children's school hours and around my son's special needs.
Once again, many thanks for your excellent work!
Rachael O' Neill
Editor's reply: Thanks Rachael - and Good Luck with the business.
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