Being a disabled parent…
Simone Baker was born with severe shortening of her arms and legs as a consequence of the drug Thalidomide which her mother took during pregnancy to counteract the effects of severe morning sickness. She talks here about her own experiences and shares some of the issues that Disabled Parents Network deals with on a frequent basis.
"Throughout the whole of my life I've never considered myself so very different to many of my peers. I learnt to drive, earned my own wage, lived on my own, went abroad on holidays, and met and married my husband, John, in 1991 when I was 29 years old.
When my daughter Lois was two years old , suddenly for the first time in my life as a disabled person, I really needed some advice and support, and was horrified at how little information and help existed for disabled people who were parents.
I also became acutely aware that there must be many other disabled parents out there who were very isolated, really struggling and desperate for help.
I had the benefit of a good informal support network and the ability to ask for help, which perhaps others did not. That’s when I became involved with Disabled Parents Network. I know now that my own feelings of isolation were not unique!
'I'm expecting a baby!' or 'We're trying for a baby!'…. Surely this is one of the most exciting time for any prospective parent – sharing the news that they’re expecting a child. Disabled people who have chosen to start a family may find themselves denied this favourable reaction to what is, for most able-bodied people, a very exciting and life-changing piece of news.
Midwives, GPs, Health Visitors and sometimes even friends and family members react by saying: 'You're being very selfish' or 'How will you manage?' or 'You can't even look after yourself – how will you look after a baby?' These negative attitudes do still exist, although things are slowly changing.
Disabled parents may be frightened to admit they are struggling in case they are seen as 'not coping' or being 'unfit parents'; their child or children being seen as 'at risk' and ultimately losing custody of their children. The greatest source of likely support is one which most disabled parents would be fearful of approaching – Social Services. However, it is critical that parents are aware of the full implications of approaching social services and this is something that organisations like Disabled Parents Network can help with.
Disabled parents may be very isolated. Whilst they may have contact with other disabled people or with non-disabled people who are parents, peer support from another disabled parent who has already been through the experience of pregnancy, childbirth and bringing up a child can be extremely valuable.
As well as all the “regular” issues around feeding, changing, bathing, sleeping, playing and development, being a disabled parent brings its own set of challenges. How does a visually impaired parent ensure that their child is safe? How does a Deaf parent hear that their child is crying? How does a wheelchair user stop their toddler from running across the street? Every parent and every child is different – even if their impairment is similar, what may work for one parent and child may not work for another.
Disabled people are used to being innovative and developing their own solutions to practical issues. For example, a mother who didn’t have use of her arms and uses a wheelchair used an extending dog lead attached to reins to keep her child from running off when out and about. A visually impaired mother attached a bell to her child’s clothing so she knew where he was. Another mother with congenitally shortened arms designed and constructed a large u-shaped bean bag which she could use whilst seated on the floor to breast feed and cuddle her baby.
As anyone who has been a parent will know, a child’s development changes almost daily, and therefore just like any parent, disabled parents too will often find themselves struggling to keep that one step ahead of their baby or toddler, finding each stage brings its own set of new challenges!