Caring for a child with cerebral palsy, by Alison
Eighteen-year-old Leah has athetoid quadriplegic cerebral palsy and relies on an adult to do everything for her. Here Leah’s mom Alison tells her story of raising a severely disabled child.
Leah was our first child so we didn’t really know how healthy babies behaved. Perhaps if we’d had another baby to compare her to, or not been so naïve, we would have asked for help sooner.
My husband and I didn’t have any experience of dealing with disability and weren’t prepared for what lay ahead.
From the beginning Leah couldn’t feed and everything kept coming back up. Sleeping was also a problem. It was awful not fully understanding how we could help Leah; her only comfort was being held by us.
The sleep deprivation was the most difficult thing to deal with but we just had to get through it. My husband was able to share the burden of the night-time care, which was a huge relief for me.
Discovering the truth
It wasn’t until Leah was about three-months-old that cerebral palsy was mentioned. We didn’t really know what it was so we did as much research as we could about the condition. The fact that there were so many variations meant we couldn’t predict how severe Leah’s disability would be.
We took Leah to the hospital every week for physiotherapy, speech therapy and to be monitored. Eventually she was given a gastrostomy, which immediately helped her to relax and made all our lives much easier.
Adapting to disability
My husband and I tried not to think too far ahead into the future and we didn’t make any alterations to the house. But as Leah got older, and we realised the extent of her disability, we adapted the house and our care to her needs.
Leah continued to rely on an adult to do everything for her. Leah couldn’t tell us where the pain was coming from so we had to feel our way in the dark. This was one of the hardest things to cope with as a parent.
Now if she’s uncomfortable she lets us know through facial expressions, noises and she can sometimes use her head to communicate. But it’s hit or miss. It’s very difficult for her.
A problem shared
Talking to other parents in a similar situation really helped us through difficult times, particularly because none of our friends or family had any experience with disability.
It was a relief to be able to laugh together, telling each other stories about the awful situations you sometimes find yourself in, like the lift breaking down. They’d usually been through a similar thing – it helped to know we weren’t alone. I would definitely recommend contacting other parents so you can share your experiences.
My husband and I helped each other through the tough times; it made us stronger but I know it doesn’t work out like that for everyone.
At first we didn’t think we should have any more children after Leah. But I realised we would be punishing ourselves by making that decision – above all, it felt natural to have another baby.
My husband found it very difficult and was anxious during my next pregnancy and the birth. We had Oliver, now aged 15, and Isabel, now 13.
When Isabel was born we hired a nanny, who came to help every day with bath-time and supper. I have to admit to being a control freak. I don’t like asking for help or relying on other people, so the nanny didn’t stay very long.
My coping mechanism is to get on and deal with it. My husband is much better at asking for help. He’ll never accept no for an answer and will always find the support we need.
We’re lucky that Oliver and Isabel were such good children. They always did as they were told and never ran off or were any trouble. I had a double push chair – Leah would sit at the back, with Oliver or Isabel in the front.
Looking after each other
Disability disables the whole family to a certain extent. Life cannot be spontaneous, except for the occasions when Leah is in respite care. We cannot go to the beach, or pack up our bags and go off on holiday. Where we go and what we do as a family has to be geared to Leah’s needs. Oliver and Isabel have never resented Leah for this.
When we can, we make sure Oliver and Isabel get our undivided attention and have the opportunity to do the things they enjoy. They are both very sporty. My husband and I balance it so that one of us looks after Leah, while the other is free to take Oliver or Isabel to their activities.
Honest and open
We have always been very honest and open about Leah’s condition with the children and, from day one, Oliver and Isabel have been considerate to Leah’s needs.
Leah used to spend quite a bit of time stretching out on the floor and, even as a little one, Oliver always managed to toddle around her. They’re very protective of Leah and would do anything for her. They help me out sometimes, fetching things and letting me know if Leah’s gastronomy starts beeping. Leah is heavy and you have to be careful because she makes involuntary movements.
As a family we go to the theatre and the cinema a lot; we’re going to see the Lion King for Leah’s birthday. Leah loves company so we often have social gatherings at home. It’s much easier to do the entertaining because we have the facilities.
Leah also loves literature so we spend lots of time reading together and she listens to story tapes to help her fall asleep. Leah is a very contented child despite her disabilities.
We were very slow to use respite care, probably a little too slow. I suppose we felt guilty getting ‘rid’ of Leah and worried that she would hate being apart from us. But we realised that it wasn’t just about us – sometimes Leah needs a break from her family. She’s really sociable and we now feel very relaxed when we take her to the Scope centre.
The future and Advice
Our biggest fear is what will happen to Leah in the future. I am adamant that I don’t want Isabel or Oliver to take on the responsibility for Leah’s care but I cannot control what they decide in the future. The main thing is that we’re all very open and they know my views about this.
When times are really difficult you’ve got to keep believing there’s a light at the end of every tunnel – you just need to find it. Don’t write off having other children; it may be exhausting but it’s definitely worth it.