Parenting and Cerebral Palsy
Hi, I'm Richard and I live with Cerebral Palsy, Spastic Quadriplegia to be specific. I am the specialist information officer for Cerebral Palsy in the community, but today I will be talking about my experiences of being a parent for Cerebral Palsy (CP) Awareness Month.
Richard and his daughter on a holiday
Could I really do this?
Growing up I wanted the same things as most people; a good job, my own house, maybe get married.
Then on New Year's Eve, my wife announced, "I'm pregnant!". I was absolutely delighted, even a little shocked, but mostly delighted. As the weeks past, we told family and friends, but my excitement was being replaced with self-doubt. I started thinking, how will I teach them to climb a tree or ride a bike? I didn't know any other dads with an impairment, so I found myself quite isolated by my intrusive thoughts. It was at this time that I found Scope's online community and spoke to other parents with impairments. Speaking to people in similar situations really helped to change my outlook and focus on what I could do, allowing me to concentrate on the impending arrival of our bundle of joy.
Adapting as you go
Many aspects about caring for a new baby was physically demanding, particularly trying to get this wriggly human to lay still during nappy change time. But it can be done. When you have an impairment organisation and giving yourself enough time is very important.
Well, that bundle of joy is almost ten now and like every family, not everything about raising a child has been straight forward. However, people with impairments have a great ability to improvise and look at situations differently. We attached the buggy to the front of my wheelchair and looked like a convoy whilst going around the supermarket! I bought baby grows with extra strong fastenings, so I could lift my daughter one-handed from the play mat, something that she found hilarious! I have been many things: a horse or a train, the possibilities on four wheels are almost endless!
The time to start school arrived, and that too caused me some concerns. Mainly, this was about being a different dad and whether that caused any issues with bullying. There were a few issues, but I'm thankful that I have always been very honest with my daughter. I decided very early on to always be very upfront about my Cerebral Palsy, and this gave her the confidence and the tools to answer questions from children who were being negative about her dad. I decided to turn a negative experience into a positive and was elected to the PTA, this was a great opportunity for me to interact with parents and children alike and help to educate people about disability first-hand.
Richard and his family smiling at the camera
Just dad
Now I'm preparing to support my daughter in the next stage of her life, secondary school. I'm certain that there will many more challenges to face. We will face those together with humour and love. I have learnt that my child doesn't see the leg spasms, they see dad. They don't see the wheelchair, they see dad. My daughter just likes to think she has a seat wherever we go! It's easy to overthink and worry that thing aren't quite how the media portrays the perfect family to be. Nobody is perfect, and certainly, no family is perfect.
I'm just like a regular dad. My jokes are corny, my shirts can be loud and I'm sure I'll be an embarrassment for years to come. After all, that is part of the job description, isn't it?
What are your tips and tricks as a disabled parent? Is being a disabled parent really that different? Let us know in the comments!
Specialist Information Officer and Cerebral Palsy Programme Lead
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Comments
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Hi Richard. As a Mum of three, i recognise a lot from your had said about parenting. I remember picking the babies up one handed using their babygrows etc to the horror of other people. I can honestly say that I never dropped any of them. I can’t remember a lot of the tricks I used to use, I just adapted to the situation as it presented. My first child was the hardest, as although we had prepared for having a child as much as we could, when she arrived I admit I was terrified. My husband had a month at home before returning to work, leaving me to cope. And I did cope, devising my on technics even if they were unorthodox. Slowly and steadily I got through. By the time child number 2 and 3 came along, it was water off a ducks back. Like yourself we were honest about my disability and we did not hide from situation. There were some problems with the children being bullied because of me, but they were strong enough to reverse the bullying.
We also had a lot of laughs along the way. My youngest daughter trying to explain to her teacher that I have CP. She was only 5. She to them I had “terrible horseys” she could not pronounce Cerebral Palsy. And my son when learning in class about disabilities and brain damage, announced that his mother did have a brain to have brain damage. The teachers who knew me well, didn’t know whether to laugh or cry. It helps to a sense of humour.
i feel that the secrets to disabled parenting are. Take your time and find your methods. Don’t let anyone tell you you’re wrong. Be honest to your children about your difficulties and have a wonderful sense of humour.
My three are all grow up and are very successful. I am now a grandmother to a fantastic grandson who teases the life out of me. -
Ah, @Welshjayne2021 "terrible horseys" made me laugh!
You are so right when you say take your time to find your own ways of doing things. I was building everything up in my head before my daughter arrived and worrying myself to death. Now she's almost a teenager and I'm just dad. Which is brilliant.
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
I glad you found “terrible horseys” amusing. It still makes us laugh.
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Love your stories of your journeys on parenting. So wonderful to hear of the love and joy children bring.
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Thank you for sharing your experiences with us
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Hi Richard,
Great blog, thanks for sharing. I have ataxic cerebral palsy and am about to become a father in just under a month for the first time. One thing I'm unsure about is how to cope with the tiredness that comes with CP while parenting. If anyone has any experiences and advice it would be greatly appreciated. -
Hi @TomGarrod. Congratulations and hope all goes well. Exciting times ahead. I would suggest you take your time and go at your own pace. When baby is sleeping, you take your time to rest as well. The first couple of weeks are will be chaotic, but don’t worry things, a routine will emerge. Enjoy this stage because before you know it he or she will be starting school. All the best for next month. Can’t wait to hear what you have???
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@TomGarrod fantastic news!
Pace yourself and like @Welshjayne2021 says try to rest when the baby is asleep. You and your partner will work out a routine that works for you, we did, completely by chance. And remember you don't have to try to be superman. You are no use to anybody if you're burnt out.Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know.
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