Before I had my son Alex, who is now nine, my image of parenthood used to be long, chatty conversations with a small child whose hand would be firmly placed in mine as we walked to the shops together. Another mother I know says she used to see red Paddington Bear wellington boots splashing in puddles.
When we were told that our babies had cerebral palsy, it took us years to come to terms with what that was going to mean to our lives.
I had a 'model' pregnancy' with labour starting punctually at 40 weeks. I was 33, fit, and optimistic. When labour unaccountably stopped, the midwife induced me. Perhaps she made a mistake. Who knows? Nothing could be proven. In my heart of hearts I don't really blame anyone. Thanks to advances in medical technology, more babies survive difficult births, but some may have brain damage.
Paediatricians can be tactless when giving the news that all is not well, partly because often they are unsure themselves of just what is wrong. It can be months or even years before it becomes clear just what the prognosis is for any particular child. People constantly ask, 'Will he be able to walk? Will he be able to talk?' and it's hard to have to say, 'No-one knows'.
Perhaps one of the most frightening things is that the safety nets you always assumed would be there if you needed them, suddenly aren't. Doctors still know little about the way the brain works. Teachers can only guess at the best way to teach any individual child. Therapists are unsure as to just how far they can help.
To add to your difficulties, it's hard to get back to work without specialised childcare, so you can end up extremely dependent on others. Anything made for children with special needs costs three times as much as normal ' an adapted trike, for example costs 600 ' so you are forced to approach charities repeatedly for essentials.
Nothing can prepare you for the dramatic way a disabled child changes your life. If, like me, you started off being proud and independent, you can easily spend the first years feeling helpless and isolated, surrounded by images of 'perfect' smiling babies and toddlers. In no time, depression can set in.
I will always remember the people who rallied round to help me out with Alex, and in doing so, indirectly helped me to come to terms with his disability. One of these was Pat, our local childminder. Another was Nicola, then training for her NNEB .
When social services offered me two slots of two hours a week with Pat, I don't think I'd had a single break of even 30 minutes before, so two hours seemed like a luxury. Mostly I used the time just to sleep, or take a bath, trying to catch up on a year of broken nights, and high stress levels caused by Alex's constant crying and refusal to eat.
Pat, who lived just around the corner, was caring and experienced with babies, and her house was cosy and friendly. She spent hours coaxing Alex to eat and cuddling him, and I was able for the first time to trust someone else to look after him. I remember her son Dave, then aged ten, saying, 'He's so sweet, I wish he was my little brother'. Although it seems daft now, I was so gratified that others could love Alex even though he had cerebral palsy. My own family had been rejecting, and I didn't expect to find the love and protection that I missed elsewhere.
Not long after I was introduced to Nicola, who had to do a two-week placement with a special needs child as part of her course. I didn't like the idea of having a stranger in my home ' I was a very private person and I hadn't yet got used to the idea that my house would be continually invaded by all sorts of professionals.
But as soon as I set eyes on Nicola, I warmed to her. I remember that she really seemed like a ray of sunshine coming through the front door in the mornings ' full of smiles and laughter, open-minded, with a genuine joy about her which Alex also immediately warmed to. What she could have thought of me I don't know ' I was her mother's age, depressed, tired and over-anxious. She was only 17, yet watching her with my baby taught me how to enjoy Alex, how to show love, and how to laugh together, and maybe forget sometimes about the worries which had threatened to overwhelm our life together.
Now Nicola is in charge of a busy nursery, and her boyfriend, Tim, is a puppeteer on CBBC television, but they still find time to be Alex's official 'respite carers' for one weekend a month. Alex loves them both as if they were family.
And Pat is a neighbour and friend who is still childminding for all kinds of children and helping me out in emergencies.
Alex turned out to have fairly severe cerebral palsy. He won't ever walk, feed himself, or go to the loo by himself. He can read, and loves playing on the computer, but talking is hard and I'm the only one who can completely understand him.
Before I had any real understanding of the implications of my son's disability, I remember watching a
little disabled boy aged about six being fed by his dad in the hospital canteen. I was moved by how brave they were ' I couldn't imagine doing something like that in public, aware of the surreptitious stares and whispered comments.
Now, years later, I will take my son anywhere. I expect room to be made for his wheelchair, I expect salt and pepper pots and delicate vases of flowers to go flying, I expect serviettes to be used up by the hundred and, on a good day, I couldn't give a damn!
I know that I am a better mother than I might have been, with infinitely more patience and resourcefulness. We love each other as passionately as any mother and son, and I like to think that the values we share are freer from conventional expectations of success. Like many others in my position, I have gained in confidence and understanding.
Of course, I still find life difficult sometimes, but thanks to the people who were, and still are, there for us, I have a very good-natured nine-year- old ' now in mainstream school with his own one-to-one carer ' who has plenty of humour and warmth for everyone, including his crotchety old Mum.
NW
Jane Muir writes a column for The Guardian about life with Alex.
