Here, to mark National Learning Disability week, we talk to Sue Baker, mother of Natalie Baker, a child with special needs.
Natalie Baker
Sue Baker, 46, and her husband Dennis, 47, who runs his own business, have two children - Lawrence, a 22-year-old student, and eight-year-old Natalie, who has Down's syndrome. They live in New Malden, Surrey. Sue says:
When Natalie was born I was 38, and because I was under 40 I never felt particularly worried that, as an older mother, there might be anything wrong with my baby.
I didn't have any ante-natal tests because I knew I would never have an abortion.
Natalie was born in a birthing pool in hospital. Both Dennis and Lawrence, who was then 14, were with me.
It was a beautiful experience. Dennis was particularly thrilled that we had a little girl, since she was the first female to be born on his side of the family for 24 years.
About two hours later, I was on my own when a paediatrician came in to look at Natalie. He was very young, and seemed very ill at ease.
He told me: 'I'm afraid she is Down's. If you would like to leave her here, we can arrange fostering.' Thoughts raced through my head. I was convinced that Dennis would never be able to accept a handicapped child. And what about Lawrence? It wasn't fair to burden him with a disabled sister.
I felt half mad as the nursing staff clustered round me, trying to comfort me while insisting they contact Dennis and get him back to the hospital. I begged them not to.
In the end, the first Dennis and Lawrence knew of any problem was when they came back to see me, and the matron asked Dennis to come into her office. Dennis, seeing me looking worried, ran straight past her.
He went over to Natalie's cot, and almost laughing with relief, shouted: 'She's not dead!' I replied: 'Of course she's not dead. But she has Down's syndrome.'
Almost simultaneously, my husband and son shouted: 'Is that all? It doesn't matter.' Dennis picked Natalie up to cuddle her, and Lawrence rushed to join him.
I shall never forget the relief, knowing that I was not alone. We started asking the staff questions about Down's children. All three of us were determined to give Natalie everything we could.
Had we known of the difficulties that were to come, we would have felt more daunted by the enormity of what we were taking on. Not that I have ever regretted Natalie's birth, but the problems, both practical and financial, that come with her have been never-ending.
I was lucky. Over the next five days the doctors assured me that Natalie had none of the heart or hearing defects often associated with her condition. Even so, from the day we returned home, I was unprepared for the army of support services we would need.
Unlike a baby who develops normally, we learned that Natalie would need constant stimulation, both physical and emotional, to ensure she reached her potential and, more importantly, being as independent of us as possible.
In the eight years since her birth, my whole life has revolved around her needs, 24 hours a day.
At first it was simply her feeding that was more time-consuming, since Down's babies are slow to feed.
Potty training, too, took much longer and Natalie remains in a nappy at night.
The psychological adjustment to the idea of being the parent of a disabled child took me a long time to get used to. When passers-by looked into Natalie's pram I would say 'She's Down's', before they had a chance to open their mouths. I think this was a defence mechanism just in case anyone said something hurtful.
As Natalie grew older and began to show a strong and charming personality of her own, I began to allow myself to stand back and let her simply be herself.
By two she was attending the local playgroup, and is now, as a result of my insistence with the local authorities, in mainstream schooling. I had to fight for this, but at last Natalie has two full-time support workers at school.
The alternative would have been for her to go to a specialist school that catered for her educational needs but might leave her unable to mix with people of her own age.
Instead, Natalie has many friends, goes to Brownies and ballet lessons, and is as much like any other eight-year-old girl as it is possible for her to be. She can read and write and is obviously bright.
It is exhausting being a carer, and the longest break I have had without Natalie was a few days staying with my sister last year.
Her father also takes her swimming and horse-riding at weekends, in order to give me some much-needed time on my own. It is wonderful to see how close they have grown. It makes me wonder how I could ever have believed he might reject her.
My greatest fear is that something will happen to us before Natalie has learned how to look after herself properly.
I don't think it is fair to expect Lawrence to look after her, although he loves her dearly. My greatest hope is that by the age of 25 she could be capable of living totally independently. In spite of all the difficulties, Natalie has brought more sunshine into my life than I ever thought possible.
• Mencap helpline 020 7696 5593/5569.
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