My name is Sue Searle and I am a married mum of 3 children – born 1999, 2004 and 2005

I am proud to say that I am a third generation disabled parent, so coping and ingenuity must be in my blood.  This is why I was horrified by my own treatment during my pregnancy and the birth of my first child in 1999.  As they had no training in parenting with disabilities  I felt like a living experiment – no one knew what to do with me or how I would manage.  A senior midwife even exclaimed ‘people like you shouldn’t have children’ in my direction when I asked for a little help 24 hours after a C-section.  Due to fluctuations in my condition I knew I would need to be able to do everything with my baby one-handed, but not one person had any idea how to help me so I learned very quickly to help myself.  However my husband had to be shown how to bath the baby as the staff had decided that I wouldn’t be allowed to do that myself (would have been nice to be consulted about what I can and cant do!!). 

Staff also decided that I couldn’t be discharged without the agreement of a social worker and an OT that I was fit to be a mother, I was surprised and upset to find that although OT training covers sexual relationships it did NOT cover parenting.  I was a first time mum and was being asked to be a ‘supernanny’.  It was suggested that my husband give up work to look after the baby (and of course me).  The professionals were quickly shown that I could manage and manage well, and my husband continued his employment.  As my first child grew up what I called parenting strategies (such as bath-time routines so if I became unwell my child would get out of the bath and stay safe) were called ‘risk management’ by professionals – this made my blood boil – how dare they say I put my child at risk.

During my pregnancy I had contacted 2 charities for advice and support: Disability Pregnancy, Parenthood international (DPPI) and Disabled Parents Network (DPN).  There advice and support were invaluable and for the first time during my pregnancy I felt that I wasn’t the only person in the world to be a disabled parent.  These links were strengthened when I became a director of DPN just after my first child was born, and then went on to be employed by them.  During my time with DPN I was asked to prepare a couple of training days on my experiences for student midwives.  The second training day I prepared, I even took along dolls and accessories for the students to attempt parenting tasks with one hand, or without thumbs.  This was a worthwhile experience for all concerned.

During my time with DPN I had my second child and although most of the imaginary concerns others had with my parenting abilities were allayed, I faced a new challenge - parenting a 4 year old while on crutches.  New strategies had to be discovered and altered, but again there was no professional able to help me.  The birth and stay in hospital were better than before – I knew what was expected of them (and me) and was more confident in asserting what I needed – not what they thought I needed.

I then re-acquainted myself with DPPI, and started working for them as an Information Officer.  During phone calls from disabled parents and professionals, I was being asked for ideas of parenting strategies for a wide variety of disabled parents and thanks to my background and experiences (I also used to work for a wheelchair repair company) I was able to come up with useful suggestions and adaptations.  As we also had a resource room with some equipment, it was a natural next step to invite parents and professionals into the National Centre for Disabled Parents, for some practical, hand-on advice and techniques.  The parents and professionals got so much more out of these visits than they would have been able to get from the telephone conversation and the publications, which are sent out.  This soon became my favourite part of the job and I wanted to take it further, but due to time constraints this wasn’t possible.

I became pregnant with my third child during my time with DPPI and the resources and information there really helped me to get the best out of it.  Again I was faced with the challenge of parenting with crutches – only this time with a toddler and a 5 year old!  From my knowledge of what help was available I was able to access a charity (Remap) that made me a harness so I could still push my toddlers buggy with my crutches and not with my ever expanding pregnancy bump. 

Thanks to baby number three, I have the opportunity to plan and prepare to assist health and educational professionals in providing disabled parents with a better service than I received.  Disabled parents have the right to family life and to be supported to maintain that family.