Challenging ‘the system’

Karen Whitehead is an Information Officer for the DPPi Information Service, based at the National Centre for Disabled Parents in London. She talks about the challenges of parenting, living and working with osteoporosis and her new role at DPPI.

I started work in September 2003 at the National Centre for Disabled Parents.  I have one daughter and have been disabled for 12 years with osteoporosis of pregnancy.

Adjusting to the diagnosis

I experienced back pain during the last few weeks of pregnancy and my spine collapsed in labour, leaving my back broken in four places and me three inches shorter. However, nobody in the hospital would believe anything serious was wrong and I was discharged home 24 hours after giving birth. At that time the pain was so great that I was unable to pick up my baby daughter Eirian or breastfeed her. I was told by midwives, health visitors and my general practitioner that there was nothing wrong and that I had “probably just pulled some muscles” and that “all women get emotional after giving birth”. I had to change my general practitioner to be believed and then it was a very long month until a back X-ray, followed by further tests, including a bone biopsy, showed that I had severe osteoporosis.

However, it only made matters worse, not better, to be told by bone specialists that “my spine could collapse like a pack of cards”. I could not even sit and hold Eirian, let alone pick her up or carry her and if I wanted to cuddle her I had to lie next to her on the bed. Having only recently moved house, with all our family ‘back up North’, we had no support network nearby. Our family had already been travelling long distances and staying with us ‘in shifts’ to provide help but it was difficult for them.

The ‘power’ of ‘the system’

We tried to get help for me at home to look after Eirian while my husband Martin was at work during the day. We were told by social services that no help was available and that if we were unable to manage Eirian would be taken into care.

My physiotherapist then suggested that I might be able to manage if a home help could come in to help me look after my baby. However, I was told by the council that although I was eligible for a daily home help, they would only help me and would not do anything for the baby (although I did not seek help for myself, just with childcare). At that stage, shocked to think that anybody could suggest that a month-old baby could be removed from its mother and a loving home, and frightened at the ‘power’ of ‘the system’, we panicked. We sold our car to pay for a live-in nanny/mother’s help who would assist Martin with the night feeds as well as look after Eirian at home with me during the day.

I went back to work after six months on medical advice, having been told that I could not look after Eirian myself on a full-time basis and with the ‘taken into care’ threat always at the back of my mind. By this time the money from our car sale was running out. It was satisfying being able to do a desk job easily when things at home were so physically difficult, but it was frustrating that all my salary went on paying for childcare, rather than me just staying at home and looking after Eirian with a bit of support.

Conflicting emotions

It is impossible to explain the joy of motherhood and yet the feelings of worthlessness at being unable to care for my daughter fully myself, and the strain placed on my marriage and other close relationships. Having a bone disease is also an invisible disability which poses its own difficulties — I was told that my level of bone disease was so bad that my skeleton was literally too weak to support me — yet I was young and looked fine ‘on the outside’.

I was very worried about not bonding with my baby but had a very practical and supportive physiotherapist. They suggested as I could not sit and hold Eirian, that instead I could ‘top and tail’ and nappy change and generally interact standing. They kitted me out in a supporting ‘back brace’ and taught me the best techniques with least pain and risk of further injury. We could not find a changing table at the right height and my back kept going into spasm with even a tiny amount of bending over. In the end Martin built a changing table on top of a cupboard, which was at the perfect height for me to reach Eirian, although I still needed help with lifting heron and off the changing table.

Later, when my spinal fractures were healed and I was trying to do more with Eirian, the physiotherapist suggested lots of other adaptive techniques, such as seating at the right height with lots of cushions to support me and Eirian, so at last she could ‘sit’ on my knees.

As Eirian got older, looking after her got easier as she accepted my difficulty with lifting and carrying her and would play by my feet before learning to scramble up on my knees herself. We spent hours together looking at books and watching videos. She was also very independent and crawled and walked very early for an only child. Although we were worried, in fact Eirian accepted and adapted easily to my situation and we found ways of doing things differently. For example, rather than using a high chair, from a very early age she ate her meals at a child’s garden table, sitting on a little chair, which she could scramble into herself, propped up with cushions. She also went early into a low bed herself rather than being lifted in and out of a cot.

Reviewing my abilities and limitations

We also eventually got a new car via Motability/ Disability Living Allowance (DLA), after a medical specialist found out about this and insisted I was eligible to claim. This brought new heartache; until then I had never claimed any benefits and had just considered myself as being temporarily ill. My disease is transient in some women and the specialists hoped initially that I would recover. Now, after reviewing my situation with the medical specialists, I had to accept that I was disabled and I then had to review my abilities and limitations in detail when filling in the DLA form and when DLA doctors visited my home to assess me.

Exploring the possibilities of having a second child

We had wanted several children, but were told by medical specialists that they would insist on a termination if I became pregnant again. With the ‘taken into care’ threats and fears of ‘the system’ and how we would cope, we never dared to try for another child, even though we knew we could have given them a loving home. We also made enquiries about adoption, but faced difficulties with this because of my disability.

I am sure that many of the problems with osteoporosis (for example, stiffness; difficulty getting going in the morning; weakness; reduced mobility, lifting and carrying difficulties; and ongoing fractures) are similar to those of other conditions such as arthritis, multiple sclerosis and brittle bone disease among others.

Negative experiences

Although I made a partial recovery, the bone disease remained severe over the years and I had various other fractures, the worst being a slow-healing hip fracture, leading to a period using a wheelchair. Eirian was at school by that stage, which made it easier, although I missed out on lots of parenting and school activities which were ‘wheelchair inaccessible’ and had difficulty seeing her teacher at parents’ evenings.

At that stage I also had difficulties with social services - this time they approached me when I was in hospital being treated for the hip fracture, despite the fact that Martin and I were coping well with an unexpected and difficult situation. In the end I refused to speak to them.

Positive experiences

While my experiences with social services have been bad, the majority of my dealings with the medical profession have been good. I think that the few negative experiences I have mentioned were really down to the attitude of a handful of individuals and not the overall medical system - really illustrated by the fact that changing my general practitioner was the best thing I ever did.

During the time that I used a wheelchair, my general practitioner and local specialist were very supportive. I also received practical help at home from a physiotherapist and an occupational therapist. They taught me the best techniques to use and provided me with useful aids to cope with everyday tasks. One really useful item was a ‘grabber’ for me to reach those awkward toys scattered around the floor (rather than me bending over from the wheelchair, which I learnt early on was not a good idea as I lost my balance easily).

When Eirian was nine years old, I had unexpected childcare difficulties and decided to care for her fully myself as I really felt that I was missing out on her childhood. This was physically difficult, but really rewarding as it brought us much closer. My main problem at that time was on ‘bad days’, when I simply could not take Eirian to and from school. As I had been working full-time with childcare until then, I had not got to know the other mums of children in Eirian’s class and so I found it difficult to ask them for help. In fact they were really sympathetic to our situation and their kindness and support over this time was invaluable.

My work experiences have also been good ones. Employers and other staff have, on the whole, been really supportive: only a few individuals seem to have had an ‘issue’ with my disability. Trying to commute and work in central London using a wheelchair was incredibly difficult though. In particular I remember leaving an important week-long work conference in tears after less than a day, because of terrible hotel and venue accessibility problems and the appalling behaviour of some individuals.

I had obviously continued working with only a short maternity break and was stunned to receive an MBE in December 2001, for ‘distinguished work services’ - I was so proud taking Eirian and Martin with me to Buckingham Palace, thinking of everything we had been through and had achieved together. Martin and I have also just celebrated our 19th wedding anniversary.

Parenting a ‘stroppy’ teenager

I am currently facing the rewarding but daunting task of being the disabled parent of a young teenager - a wonderful but at times ‘stroppy’ 12-year-old now attending secondary school. But, talking to other non-disabled parents of her friends, I realise that perhaps my disability is not such a factor as they are facing similar issues and situations themselves.

I was very proud to hear that Eirian’s science class was discussing health and illness this month and she not only told her class that her mum was disabled but also that I was really healthy.

New role at DPPI

I was initially trained as a librarian and have worked in various information roles for charities, including a disability charity, providing information publications and a telephone helpline.

I wish I had known about Disabled Parents Network and DPPI before, as they could have been of so much help to me, but it’s never too late. I was thrilled to get my new job and hope that all my past work and personal experiences will be beneficial and can be put to good use. I have been warmly welcomed by everyone at the National Centre for Disabled Parents and am busy learning about the Information Service.

About osteoporosis

Osteoporosis literally means ‘porous bones’ and can be a disabling disease. Each year it causes hundreds of thousands of hip and other fractures in the UK alone. Although there are risk factors such as early menopause or hysterectomy, or long-term use of corticosteroids, everybody is potentially at risk because of the loss of bone which occurs as we get older.

Osteoporosis of pregnancy is a very rare form of osteoporosis, sometimes leading to extreme bone mass loss. In most women the osteoporosis will partially or fully recover spontaneously after the pregnancy.

Osteoporosis societies offer support through a range of booklets, telephone helplines and local support groups. The UK National Osteoporosis Society has a self-help support group for women who have osteoporosis of pregnancy and a publication for parents who have osteoporosis.

UK National Osteoporosis Society

Helpline: 0845 450 0230

Website: www.nos.org.uk

Email: info@nos.org.uk

International Osteoporosis Foundation (has 155 national societies as members)

Tel: Switzerland (41)22 994 01 00

Website: www osteofound.org

First published in Disability, Pregnancy & Parenthood international, Issue 44, Autumn 2003.

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