Ena's story

Ena LoumEna Loum is a parent carer whose first novel Girl Who Dared to Dream has been published by Olympia and her second book Forbidden Child Cries Blood is due out. She talks to us about how she manages to write in-between caring and working.

What’s your background?

I am an accountant by profession. I gave up my career to care full-time for my son, Musa, 16. He has severe autism, ADHD, Sleep disorder, no sense of danger, epilepsy and other health conditions. I now work part-time in adult social care.  

What does caring for your son full time involve?

Musa needs help in his daily routine, personal care, managing his health and medication, and ensuring his safety. We structure our family life around his care needs. He wakes up three to four times in the night.

He transferred from nursery to St John’s Special School and the Child Development Centre. CDC sessions helped me put a lot into perspective concerning Musa’s care needs. I met and became friends with other parents in a similar situation as myself, some already dealing with multiple children living with disabilities. Listening to their stories and their coping mechanisms gave me hope. They told me about what help is out there and signposted me to the right places.

And today, Musa’s disabilities are well managed with medication. Yes, he still keeps us on our toes, but we know what to expect and how to deal with it. And we love him like we would any child. Since his diagnosis, he has discovered his voice in the past few years. He can use sign language and is saying more and more words and loves to be heard.

Do you get much help?

Yes, now I do. I had a lot of support from my family. Once his case was known to the Children’s Social Care Team, they were very helpful. And Musa also has respite care (direct payments) weekends, which has made a massive improvement in our quality of life as a family. It took a while to get the right help but now there is a huge improvement in the system.

How did Carers in Bedfordshire help you?

You have helped us in many ways. Through clubs, Musa’s brother and sister met
other young carers like them which gave them a sense of belonging. I met other
parents who became long term family friends. We have also benefited from the
young carers grant which they’ve used on summer holiday camps such as football
and stagecoach and short holiday trips. A grant enabled me to study a course at
the University of Bedfordshire.

How did you fit in writing two books?

I am tempted to reply I don’t know because there never seemed to be enough time to do anything else apart from running around. Now Musa’s brother and sister help a lot around the house and with meal preparations, thus allowing me time to
concentrate on other things.

I had ideas but didn’t start typing anything down until two years ago. Before that, my daughter had written two children’s books. I would insist on editing or making changes for her. She said to me, “since you like to change my book so much, why don’t you write your own book?” I bought a laptop immediately after that to start typing my ideas! Once the first chapter was done, it started to flow. When it’s my day off work and the kids are at school, I sit and type for two or so hours or review – or even on the school run, while waiting in the car. In the evening again at least for an hour or two and at bedtime, I will write thoughts that are keeping me awake.

Where did you get inspiration for your stories?

My writing has been initially inspired by my old-time favourite author, Daniel Steel. The Girl who Dare to Dream was inspired by the women who we support in our charity. It is an exciting read, plot-driven in its entirety.

I have always had a passion for books and writing. Growing up I used to write short
plays for our school end of year performances to raise money for charity. In my
teenage years, I also read countless numbers of Mills and Boon novels.

 

When did you take a career break?

Once I was standing in line at Sainsbury’s supermarket waiting to be served, I just
couldn’t carry my head. While standing, I was falling asleep due to sleep deprivation.

I just heard a woman’s voice behind me asking if I was alright. I looked over
my shoulder and shook my head. I realised I was only a fraction away from
falling over.

Musa suffers from a sleeping disorder, so I have to stay awake and that was taking its toll on me. I was also rushing in and out of doctors’ appointments for my daughter who was seriously ill. I knew I had to take a step back. I had a strong
network/circle of family and friends, otherwise, I don’t know where I would be
today.

 I finally called it quits and left my job. Once Musa was happily settled at school and his health was managed and my daughter was out of danger. I enrolled at the University of Bedfordshire to study part-time.

I started a new part-time job in 2018. I was scared that I wouldn’t be able to cope, but with the training, I became more confident in my role and I am now enjoying it. The job itself is an eye-opener and I find it very rewarding. It fits in well with my family commitments and I can still find the time to do my household chores and the
things that I love and I enjoy, such as gardening, walks around the park and
writing.

Any tips you can give other carers?

I know it can be tough sometimes in your role as a full-time carer for your loved ones, but do not despair. Yes, only you know how best the shoe you’re wearing fits
but try to reach out and ask for help. Whatever you do, please do not suffer in
silence.

Sometimes it may seem like you’re climbing a mountain and you have to fight for everything but don’t give up. Work in partnership with your child’s school and always participate and review your child’s care plan. Make sure it is person-centred
to your child’s needs.

Be engaged. Join carer forums and get to meet other carers. Sometimes we learn more from people going through what we’re going through. I used to get loads of
literature from professionals, which sometimes was not relevant to my needs.
Every child is different and has different care needs. Sometimes they
demonstrate certain behaviours at home that they do not show at school. If you
have concerns, continue to ask for help and don’t just accept or be led into
believing that you have to introduce tough parenting skills and your child will
stop displaying challenging behaviours. Especially if your child has no speech
and unable to tell you what they’re feeling.

Create a family social calendar. At least once a month, we have family time. It could be as simple as a picnic in the park, a trip to a restaurant or a theme park.
Depending on what you can afford and what suits your family needs, try it.

Find the right balance between your caring role and do something you love. Strike a
balance and intersperse your caring role by making time to rest, relax and
exercise. Make time for yourself, talk and share your worries, go walking. This
will allow you to refresh and enable you to give your loved ones the best of
yourself.

Plan ahead and have a routine that works for you. I used to carry on working from the moment I drop the children off at school. It’s the shopping, the cleaning, the
cooking, it never stops. Sometimes before I knew it, it would be 3pm, time for
the school run again and I haven’t even finished all I had wanted to do for
that day. I constantly felt tired. But now, I have an alarm for everything. The
moment the alarm goes off, I will stop those tasks even if it was not finished.
It works well for us. See if works for you.

Take time to read. Even if it is one hour in the day. There were times in my life that
reading was what kept me sane. As they say, the thing with the brain is, you
either use it or lose it.

Visit olympiapublishers.com for further information about Ena’s books she ha published.