DCSIMG

OK, we're disabled but we are still very able mothers

Sheila James

A single mum to Megan, ten, Sheila is 37 and has cerebral palsy. She is separated from her husband Neil, who has muscular dystrophy and lives in Gorgie.

"The first thing my GP did when he discovered I was pregnant was to assume I wanted an abortion," she says. "He was wrong. My husband Neil and I had been trying for a baby ever since we'd got married three years before. In fact, I think that our daughter Megan must've been the most wanted child in the world.

"We were so happy that we were going to be parents and naively expected people to feel pleased for us too. But as it turns out, our GP's reaction was pretty typical.

"Family and friends were surprised, but supportive. It was the people who didn't know us that were convinced we were making a terrible mistake. We were made to feel as if we were being irresponsible for starting a family.

"Cerebral palsy (CP) is characterised by abnormal posture, reflexes and coordination.

"It is caused by damage to the brain and can sometimes occur, as was the case with me, during childbirth.

"But one of the most difficult things that people with CP face are people's preconceptions. People often act as if I don't exist. They are unsure of how to speak to somebody who has a disability and so they make the mistake of underestimating me.

"By the time I gave birth in July 1997 we had become used to peoples negative attitudes towards my pregnancy.

"As I pushed Megan into the world my pelvis broke, leaving me in more agony than I had ever thought possible. But I knew that I couldn't afford to spend time in bed recuperating.

"Anyone else would have been allowed to recover in that situation, but I knew that the medical profession didn't see me like everybody else. Every day I would get up to feed and bath Megan myself. It was agony but I was determined to show the doctors I could look after my little girl.

"The doctors were convinced that I wouldn't be able to care for my baby properly, and I knew I had to prove them wrong if I was going to be allowed to keep Megan.

"But after two weeks they still wouldn't let me take her home. It was horrible, I'm an intelligent person, with several Highers and a qualification in accountancy, but they were treating me like a child who wasn't capable of making decisions for myself.

"Instead of asking me what I could cope with, they were presuming I wasn't able to look after Megan. In the end they only let me and Neil take her home because my mother promised to stay with us.

"Of course, over time we were able to prove that we were good parents. Like any family we built up a routine, although perhaps ours was a little busier than most.

"With the right support from social services and the Lothian Centre for Integrated Living, we were able to lead very independent lives.

"Sadly, Neil and I broke up in 2005. We'd been together since we met at Gracemill School as teenagers, but over the years had grown apart.

"Part of the difficulty of relying on outside support is that there are always people in your home. I couldn't cope without the people that help me and I get along extremely well with them, but always having a third person around can put a strain on your relationship.

"That's not to say that I don't hope to meet someone else one day. People think that disabled people can't have relationships, but we're just like anyone else. I want to share my life with the right person.

"Megan now visits her dad regularly, but lives with me most of the time. And to be honest, I worry more about the effect that our split will have on her than the fact that both of her parents have disabilities.

"She's such a happy, clever and well-adjusted girl and I don't think the fact that we are a bit different to other families concerns her that much. Megan grew up and hit all of her milestones. In fact I thinks she's well ahead of her age-group in many ways.

"Of course, every now and then things happen that upset me. The other day I was out shopping with Megan and a woman turned to her and said 'Oh isn't that nice that you are looking after your mother'. I was furious. She treated me as if I didn't exist.

"But worse than that, she presumed Megan was looking after me. I will make sure that never happens. I am Megan's mother and I am there to look after her. Being her mum is the most important job in the world to me."

Deborah Marsden

A senior assistant in cataloguing standards and maintenance team at the National Library, Deborah, 43, has the degenerative condition multiple sclerosis (MS). She is separated from her husband and lives in South Queensferry with her children, Ben, ten, and Katy, five.

"I am still coming to terms with being a different mother to the one I hoped I would be.

"When I was growing up, my mum would bake cakes and do finger painting with me. It was a very happy childhood and I wanted very much be able to give that to my kids too.

"Certainly the most difficult thing about multiple sclerosis for me has been the toll it has taken on my family life.

"While me, Ben and Katy are a very happy family, there are things we can't do together, and will never be able to do together.

"And while I fight the sad feelings I have, I think it's normal to mourn the things we have lost. I cope with this by taking each day as it comes. That way we get to enjoy the small joys and blessings that come our way.

"In many ways we are very lucky. Yes, there are things we can't do, but there are so many things we can enjoy together. We get to spend a lot of time together and as a result are very close. With so many people on hand to help, things like sleepovers are a piece of cake. Sometimes my MS seems a very small part of our lives.

"I was 16 when I had my first episode. For three months I couldn't move my hands properly. They were swollen and my joints didn't seem to work anymore. MS can cause a variety of symptoms, including changes in sensation, visual problems, muscle weakness, depression, difficulties with coordination and speech, severe fatigue, problems with balance, overheating, and pain. Of course there are many other things that can cause these symptoms, too, and when my hands got better there seemed no reason to worry.

"For the next ten years I lived a trouble-free existence. I had a glamorous job in London, working for a record company, and my life was a constant round of parties. But at 28 I realised I was ready for a change in pace of life. I moved to Edinburgh after accepting a job at the National Library.

"Soon afterwards I had my second episode. This time doctors diagnosed MS, but as before, I quickly recovered. There are many people that have MS that are only affected mildly. I was young and felt invincible. In my mind there was no reason to worry before I had something to worry about.

"A few months after my diagnosis I met a man at work and we

fell deeply in love. He knew about my MS but it didn't stop him wanting to get married. We decided to start trying for a family soon after our wedding. Ben was born a year later.

"There is evidence that MS can be exacerbated by pregnancy so we were unsure whether to have more children. Things were good and we didn't want to tempt fate. But when I became pregnant accidentally in 2001 the decision was taken out of our hands. Deep down inside we both really wanted another baby and so when Katy arrived nine months later it felt like fate.

"But soon after I had another flare-up with MS. This time, however, I didn't get better. And since then my condition has deteriorated to the point that I am now reliant on a wheelchair. I also need round-the-clock care that is provided by social services and the Lothian Centre for Integrated Living. I'm in a very fortunate position in some ways, though. I can continue to lead a very independent life.

"This, in part, is due to the fact that I'm not frightened of asking for help. That way I have everything I need to make sure my kids lead the lives I want them to be able to lead.

"There have been bad moments. My husband left me when Katy was a year old and is now living with my best friend.

"But I've never regretted having children. They have fun, carefree lives and a support network surrounding them that ensures all of their needs are met. I will continue to strive to make sure their childhoods are as happy as my own was.

"I feel extremely positive about that and I'm looking forward to the next stage in all of our lives."

Deafness is no obstacle to a loving family life

Debra Dalton

A part-time Health Project Coordinator at Deaf Action, Debra, 41, was born with the degenerative condition Usher syndrome, which causes hearing and sight loss. She lives in Dunfermline with husband Paul, 43, who is also deaf, and sons, Calum, three, and Kyle, 18 months.

"I was born deaf but my twin sister is hearing. I never felt upset about my disability, though. In fact the only time I feel disabled is when society puts obstacles in my way.

"The other day I went to collect my son Calum from nursery and there was an intercom buzzer on the door. I sat outside buzzing the intercom to be let in for half an hour before somebody came to rescue me. I wasn't able to communicate with them so they wouldn't let me in. Mainly, though, it's a language issue to me, a cultural thing. Just as some peoples' first language is English, mine is sign language. For us, deafness isn't a disability, it's a culture.

"Many deaf people rely on their other senses to get by. Unfortunately for me, Usher's syndrome has a degenerative effect on eyesight too. I have no peripheral vision, and find it difficult to judge depth and pace. It's possible that I will become completely blind one day.

"I try to remain positive, though, and it helps that I have Ian. We met at a boarding school for the deaf in Darlington as teenagers and have been together ever since. I know that he will make sure that the boys are safe and cared for whatever happens. He's my rock.

"Calum and Kyle might have been deaf but as it turns out they can hear perfectly well. Ian and I began teaching them sign language from birth. It was important to us that we could communicate properly with our children.

"I don't feel I've missed out at all as a deaf mother, but I do sometimes worry that the boys face more challenges than they would do if I could hear. I try very hard to make sure this doesn't happen.

"One of the main things I get upset about is that I find it difficult to communicate with other mothers at their school.

"I want the boys to be able to socialise with other kids of their age but making those arrangements can be very difficult for me. I think other mothers feel awkward about knowing how to communicate with a deaf person, but there is no need. I can speak a bit and lip read too.

"The idea that I might be able to be a successful mother is confusing to them. They see who I am on the outside, rather than the person I am on the inside.

"The thing I find most difficult, though, is when people try to use the kids as translators. I'm extremely independent and don't need this. It puts too much pressure on the boys. We are their parents and we want to be able to take care of them, not the other way around.

"I am proud to be deaf. And it's important to me that my children feel proud of who they are and where they've come from too."

The Disability Rights Commission will be at the Good Parenting Show at the Edinburgh Corn Exchange on May 19-20.

 
 
 

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