Prosthesis. A path that many people with an Upper Limb Difference will navigate at some stage.
“Parents are sometimes faced with claims of what their children won’t be able to do in life”
For parents it’s hard to know what’s best for your child and as a child it’s tough figuring out whether you’re better with or without one. There are advantages and disadvantages of prosthetics. This differs greatly between ages, types of upper limb differences and where and how you’re accessing support. From cosmetic to hi tech bionic arms there are a multitude of options, so we’re sharing some insights and experiences from a few within our Reach family. One thing we found in common, is that when it comes to prosthesis, it’s personal.
Will my child benefit from a prosthetic at a young age?
“We were recommended prosthetics for physical development.”
One Reach Mum said their local prosthetics department recommended them for the early years to aid brain development and help strengthen her daughter’s shorter arm, so from 3 months old her daughter used one and
she says it helped her daughter physically: “The early use of a prosthetic really helped, now that she doesn’t use one every day I’ve noticed her shorter arm is weaker and has less muscle. She currently has two prosthetics; one for help with her back alignment whilst riding her bike and the other for basic strengthening exercises.”
Should I encourage my child to use their prosthetic?
“She did better without it!”
Some find that function is most important. One Mum realised that her daughter’s prosthetic didn’t enhance her life at all and seemed to actually “slow her down”. She has older children with upper limb differences around her which really helps and enables her to figure things out herself. “As long as my daughter is happy and knows she has help if she needs it, that is fine for me.”
How can we introduce our child to prosthetics?
“It’s a toy in his toybox!”
One Reach Dad explained that he has been comforted by Koalaa’s approach of letting it be part of his son’s toy box and not forcing him to use it. “They said it should be about exploration and discovery, there to use or play with if he wants to. And if it’s a part of his toybox now, when he’s older and maybe looking at other prosthetics, they won’t be foreign to him.”
Will my child be ok without a prosthetic?
“I was told he wouldn’t crawl without one.”
Another Mum’s experience emphasized just how important the Reach community can be to help navigate early development stages like crawling. Becoming a parent for the first time and being told that your baby has been born with an upper limb difference can be an overwhelming experience:
“I felt overwhelming sadness for him, combined with guilt that I must have caused it and shock… We were referred to a consultant who said that our 3-month-old son wouldn’t be able to crawl without the use of a prosthetic.” She didn’t think twice and spent over £2000 on an Ottobock prosthetic.
“I took what the consultant had said as gospel… I just thought it would be simple – get the prosthetic and all will be fine. It didn’t occur to me that my son would need to be encouraged to wear it. ”
Now, her son is 9 months old, and she says: “it’s taking time for him to get used to it but to be honest he seems to be trying to crawl far better when he isn’t wearing it”.
Medical professionals often have very practical and helpful advice and prosthetics can have a life changing affect. Unfortunately, parents are sometimes faced with claims of what their children won’t be able to do in life. Being part of the Reach community is beneficial in many ways. Knowing you’re not alone and can draw on the experiences of other people with similar challenges is invaluable and things you thought your child could never do become normal. With the support of like-minded people, you soon realise that ‘they will find their way.’
One Reach adult told of a prosthetic being thrown in the bin after years of unsuccessful efforts. “Life improved no end. I decided to do what was right for me and not take advice from someone who hadn’t considered what I can, can’t or want to do!”
Will a prosthetic transform my child’s life?
“We realised, it’s not just about the prosthetic, it’s the support and the community around it.”
A prosthetic can be life changing, enhancing ability and confidence, but for some it can be challenging and disappointing. Often heavier than expected and difficult to adjust to, they occasionally need physiotherapy to strengthen shoulders or arms. They require patience, time and effort and expectations should be managed in advance. They are not a quick fix but given the opportunity, help and support, children decide on their own if it’s for them or not.
We do know however, that prosthetics can have a hugely positive effect on social interactions for younger children.
Are Prosthetics good for social interactions?
“She gives talks about her prosthetics!”
For younger children prosthetics can be a brilliant way to start conversations with peers or friends. The attention is positive and there’s even the ‘FOMO’ (Fear of Missing Out) element from the other children which can be a real boost for the child’s confidence. Some children however, like the idea of a prosthetic but realise they prefer life without it, choosing to show-off their upper limb difference instead. One Reach child said: “I didn’t really use my prosthetic arm and I realized it’s OK to be different!” This is the message that threads its way through every story – that it is always personal when it comes to prosthetics. No matter which kind you choose, as long as a child knows they’re loved and supported, with or without one – that is all that matters, and that children and parents know that there is always help and advice if and when they need it, role models to look up to, professionals to speak with and a community behind them.
Read the entire Within Reach here: https://reach.org.uk/wp-content/uploads/2021/03/WithinReach-Spring-2021-V5-Interactive-compressed-compressed.pdf