Combining caring for a disabled child and work

Sera Johnston has written a book about her experiences of raising a daughter with cerebral palsy and talks here about how she managed a full-time job and caring for her daughter.

Sera Johnston was looking forward to her first birth like any other mum to be, imagining what her baby would be like and doing "all the right things". She took folic acid, she didn’t drink, she avoided seafood and kept away from people who smoked.

However, when she went into labour it soon became a full-blown emergency and after a caesarean she woke up to find her baby had been taken to the neonatal unit with hyperviscosity syndrome, a condition which means there are too many red blood cells in her body. She needed an exchange transfusion to lower the red blood cell count. She was told that her baby may have suffered a loss of oxygen during the birth and may suffer developmental delays.

The baby was given a brain scan which found she was okay. Finally she was discharged and the family headed home to start "being a family and looking forward to a wonderful life".

Fast forward 13 months later – a month after Sera had returned to work from maternity leave – and, following a session with the health visitor where she said there appeared to be delays in Dana reaching her milestones, she was sent to see a paediatrician and there, fairly abruptly, the family was told that Dana has cerebral palsy.

"It was like a bombshell," says Sera. "I fell into a depression, feeling sorry for myself and blaming myself for letting her baby go three days overdue. I was trying to find an explanation and to find someone to blame. I felt I should have been able to protect my baby."

Work

She says she felt unqualified to look after Dana, but she says work helped. "In a sense it was my escapism," she says. "I threw myself into the normality of work."

Sera, who qualified as a neuro-linguistic practitioner in 2010, works in the NHS facilitating team development and managing a training department. It’s a full-time job, but flexible. That has been vital for her as she has had to take Dana to numerous appointments over the years. Her husband also helps a lot as he is able to work from home.

The family have had no support from social services because, says Sera, Dana is not deemed disabled enough, for instance, to qualify for help to get to school. She says it has been a huge juggling act, taking Dana to school, heading to work, then picking her up for appointments and going back to work and then back to school.

"I am very fortunate that my husband and I are close and can juggle things between us, but I have felt like giving up and I know many who have given up work," she says. "I vowed I would not let that happen for my own sanity. I do not give up easily. My career is really important to me and I think it is important for my daughter to see that I work."

Book

She says she has spoken to many other parents of disabled children and they all felt very much alone so she decided to write a book about Dana’s experience and about what it has been like for her as a working mum trying to deal with a child with cerebral palsy. "On the outside it can look all rosy, but on the inside it’s really difficult," she says, adding that she has been unable to find any other books by parents about what it’s really like.

As Dana grew up, Sera was told she would never walk. "I found it very hard to accept that she was disabled," she says. So she took Dana to ballet because she wanted to do it. "I wanted her to experience what other children experience," says Sera.

However, she faced a lot of barriers to being treated like other children – mainly as a result of other parents’ attitudes. Dana was rarely invited to her school friends’ houses or on social outings. "She went to a couple of parties and then the invitations stopped coming," says Sera. She thinks this was probably because their parents were worried about the responsibility of looking after someone in a wheelchair, but Sera’s concern was that Dana was being excluded. "I spoke to her teachers about what she was like at school and they said everyone likes her. They suggested inviting her friends round to our house, but there’s only so many times you can do that without them reciprocating," she says. "It was probably a fear thing due to ignorance, but it was heart-breaking. Dana knew she was different, but she didn’t need to be told even more by being excluded."

Sibling

Sera was also keen that Dana should have siblings, but she was terrified of repeating the same experience as she had had with Dana. After one miscarriage and with great help from her doctors, she gave birth to her son, Oliver, early.

"It was horrific being back in the same place at the neo-natal unit," she says. "Oliver had a collapsed lung. I felt I couldn’t go through it all again, but he is fine. He walked for the first time on Christmas Day and I felt myself relaxing," she says.

Oliver has had to grow up fast, she says, as many siblings of disabled children do. "His teachers say he always takes new children under his wing. He is very caring," says Sera, who tries to ensure Oliver gets some time alone with one of his parents regularly.

Sera never gave up on Dana being able to walk and found out about a pioneering operation in the US which could help her. She started fundraising just a couple of months after her mother died and says the process helped her find out who her true friends were. "One person said they didn’t have time to help. I was working, looking after Dana, looking after my seven-year-old son. That really hurt," she says. Others were fantastic, though, including several of her work colleagues.

Sera herself worked round the clock organising fundraising events and printing flyers and t-shirts. "My laptop became my best friend," she says. It took six months of working through the night to raise the money. Her husband was nervous about the operation until he was able to talk to the surgeon so it was mainly Sera who pushed for it.

Operation

Dana, who is now at secondary school, was in favour of the operation, having seen it being performed on a BBC video, but she became so nervous just before it took place that she was sobbing and pleading with her mother not to make her go through with it. "It was always at the back of my mind that she was nervous and scared, but had not said anything up until the final moment and seemed confident, perhaps a bit too confident. When she finally gave in to her fears it was horrific," says Sera. "But you become stronger at these moments. You have to become that authoritative figure and forward think her to the future. I knew it was the right thing for her. It was a small price to pay for her long-term future."

Fortunately, the operation was a success and Dana is now able to walk with sticks, although she still has regular physiotherapy sessions which she has to balance with her school work.

Sera said she had meant to write the book before, but she feels now is a good time because the operation is over. "I feel that part is now over and she has been given a new life. She chose to have the operation. The alternative was being in a wheelchair for the rest of her life. It has given her a sense of independence and a feeling that she has more options. It is a new beginning," she says.

She hopes her book will help other parents of disabled children. "People have been very positive. It aims to help parents recognise the feelings and emotions they have and to encourage them not to suffer in silence."

How she fit it into her schedule of work and family life and her NLP coaching is difficult to know. She says the NLP has helped her visualise her problems and move forwards and has been useful for talking to Dana about her rehabilitation goals. It also gives her another opportunity to help other parents in similar circumstances. "I hate seeing people who are not able to achieve what they want to do," she says. "You have one life and you need to fulfil that as best you can. In part that can be simply about changing the way you think and adopting a more positive attitude, taking small steps. It can make a huge difference."

*Dana’s Walk is published by Ecademy Press, price £10.99. See www.danaswalk.com for more details.

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