Dravet Syndrome Stories From Those Who Know

Balancing Work and Life Responsibilities

by Jayne Lehmann, South Australia, Written August 2008

I am the mother of three daughters. Our middle daughter is 14 and has a genetic disorder, Dravet Syndrome, causing intellectual disability, unstable epilepsy and a number of associated conditions. I now work from home in order to be able to also provide the care our daughter requires.

I was a Clinical Nurse Consultant of a medical specialty at a major hospital and returned from 15 months maternity leave to my 4 day a week job after our middle daughter's birth. We had employed and trained a nanny to care for our two daughters but she resigned on the first day due to her fears of caring for our daughter. It was obvious I would not be able to continue in my job. I resigned the position and was given one day/week in a position two levels lower. However, the people with whom I was working felt threatened by me still being within the Unit and created an environment that was impossible for me to continue working in.

I developed a business plan to run my own business, in order to work while caring for our disabled daughter. As a nurse this was a unique approach to the challenge as few were working in private practice. I had to think outside of the square in order to consider how I could still work as a specialist nurse from a home base. If I had not done this, I would now not be working. What a terrible loss of skills that have had a significant input into both my area of specialty nationally and the care of people with disabilities.

Obtaining skilled child care has been a constant challenge. Using a child care centre was not an option, so at the time I negotiated for my mother to provide some informal care and I cared for our daughter the rest of the time, juggling work and child care at home while building up my business.

Now that our daughter is 14 it has been getting harder and harder to keep trained care workers to provide us in-home support and respite care at home. I receive 2 hours assistance from the local council and we have had a great deal of trouble getting appropriately trained staff, especially with Sarah's epilepsy. Eventually we had to change agencies - to one that is significantly dearer - in order to get the appropriate care for her. We have had care workers who have seen Sarah have a seizure and then will not come back again as they are too scared. Funny, I thought that was what they were being employed to do - care for our daughter and her associated problems.

The turnover of carers is enormous, which makes it stressful in itself. You already feel like you are living in a gold fish bowl let alone having to have a steady stream of new people coming through your home. Most of the carers are not skilled enough to deliver the care we require and I have to do extra training and emotional support of them!. Some agencies employ a lot of students or people looking to provide care for a short period of time, before moving onto something else. This increases the turnover issues.

A few years ago I had a care worker - an occupational therapy student - bathing my daughter. Our daughter started to have a seizure in the bath and I had to rush in and train the care worker on what to do. I am being offered a service that is not a service. The whole first aid training is inadequate because they are not doing it around the lived experience of treating a seizure e.g. in the bath. They need much better training videos showing children having different types of seizures and practical suggestions of what to do in a variety of circumstances.

We are told it is very difficult to get care workers. They are certainly not equipped to manage our daughter's behaviour, as she has a lot of autism-like behaviours - quite complicated. There is a need for a pool of higher paid/trained care workers.

What am I going to do once our daughter turns 18 and many of the services she accesses now are not available? Three of the four respite options will no longer be available. When she starts post-school options, currently there is no transport. I will have to drop her off and pick her up each day, which will take 2 hours every day. There goes my life: how am I going to work? What a waste of my professional skills which are currently in short supply around Australia .

I often spend time crying and worry about what happens if I get sick or worse still, die? I am exhausted, sad and scared. I have no family back-up so we have to import the care we need. Juggling my work and family commitments is increasingly difficult.

I don't feel confident even taking my daughter to hospital as our experiences there have not been positive. As a health professional myself, I provide a high standard of care in what I do, but we can't find it in return for our daughter. There have been two mandatory reports made regarding physical abuse our daughter experienced in 2006 and she has often returned from places bruised. In order to use the care we require for me to work, we have to trust it. There are many issues requiring attention to improve the work/life balance of carers of children with a disability.

Why should I have to work at such a high level of advocacy in order to evolve the services we need to ensure my daughter's future? I would spend about 14 hours a week in disability advocacy and helping to evolve the services we use and that is on top of the care we provide for our daughter and my work. For example, I have set up an email network to provide adequate information for others, do these submissions, and work with the organisations to improve their service delivery etc.

Professionally I see a lot of patients with intellectual disability and their parents. A lot of the work I do initially is to help them sort through the disability service quagmire as I can't help them with their health issues until we have sorted out these other more pressing stressors.

The skills and money people get from work provides parents with increased options in dealing with their child and their disability. It also leads to more sophisticated ways of operating with service providers. Equally, the more parents of children with disabilities are in the work force, the more we evolve community understanding as a whole. It also provides 'respite' from the role of Mum and Carer and provides a sense of achievement and self worth.

To continue to work, parents of children with disabilities require the government to sort out the disability support system. Due to our experiences with our disabled children, these parents are often highly motivated and have enhanced skills that are valuable to employers. Their tenacity and determination should be prized and supported.

14th September 2008. Submitted by Jayne Lehmann