Different disabilities, shared experiences

I have a friend whose children have cerebral palsy.  For those of you unfamiliar with cerebral palsy, it is a neurological condition that is caused by damage to the brain, before, during or after birth.  It can affect people in different ways but can include muscle stiffness, problems walking, speech difficulties, a curved spine and learning difficulties.  For my friend’s children, their difficulties are centred around mobility problems. 

Nevertheless they are bright and sociable children who with support have been able to access mainstream education and out-of-school activities.  This isn’t to say that my friend’s life has been straightforward; far from it, she and her family have had to fight for everything her children need including specially adapted wheelchairs.  Even now, she needs equipment that will enable her to take her children out on her own without relying on someone else to physically help her.  Even her back garden is hard to access with the lawn being approached by a flight of steps.  Not surprisingly she is not looking forward to the long summer holidays and being couped up inside her house.

But neither am I.  You see, I understand her frustration and slight sense of dread of the upcoming summer holidays albeit from a different perspective.  My children may not have a physical disability but their autistic disorders have meant that it can be hard for us to access the world beyond our house.  The way my children’s brains are wired up means it is hard for them to imagine new settings and to deal with changes in routine.  Coupled with their social difficulties and  sensory sensitivities, my children’s behaviour can become challenging and difficult to manage.  Going out  is not something we can do spontaneously and going out to new places is not something we can do at all, unless we plan carefully.  Even then there is no certainty that we will succeed in getting out of our front door.

Going out is not something I particularly miss during the winter months because in some ways we can be like everybody else; snuggled in front of the fire, watching videos and playing computer games.  It is during the warmer months that ’going out’ takes on a particular poignancy when the days become longer, people start talking about holidays and TV adverts tempt us with the exotic possibilities outside our homes.  It’s then that I am painfully reminded that my family is different, that my role as a mother is different and going out as a family is not something that we can easily accomplish.

Nevertheless speaking to my friend the other day reminded both of us that though we have children with different disabilities, as mothers we share similar difficulties and frustrations.  It was a welcome moment that showed me how ‘shared experiences’ like this have the potential to unite families across different disabilities.  So often specific conditions and disabilities go off and do their own thing and it becomes easy to forget that the impacts of a particular disability are also experienced by families dealing with a different disability.

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7 Responses to Different disabilities, shared experiences

  1. I so get this! I went to the pool yesterday and saw a mom who’s son had Down’s Syndrome. She came running over and said how glad she was to see me so we could get together. We both knew how hard it was to get our kids out of the house.

    • Hi Lizbeth, its so reassuring to meet others who understand how hard it can be to get out and about isn’t it? With those people, I find I don’t have to explain or justify why I have these difficulties with my children – I can just be myself.

  2. I so get this! I took the kids to the pool yesterday (not an easy thing to do) and saw a mom I know who’s son has Down’s Syndrome. She came running over and said how glad she was to see me so “we could play!” It was nice to have a giggle and know how hard it was for her to get to the pool as well.

  3. You’re so right about the shared challenges. It’s easy to get stuck in our own bubble and forget how big the special needs community is and that we can learn from and support each other through the struggles we all experience.

    • I agree; its too easy to become absorbed by your own difficulties. The chat with my friend reminded me how much we share with others who have different challenges. Thanks for contributing to the discussion.

  4. I think our days to the seaside are behind us too. Daughter desperate to go to the seaside but son refuses to go anywhere. Trying to find a solution where I can meet everyone’s needs but its hard. Its a case of dividing up the family which I do sometimes for a short trip out to the shops but I really don’t want to do this for a longer break or holiday. But maybe I have to. Deb x

  5. Oh I so get this and have been struggling to stay cheerful all weekend as I look out the window at the sunshine. Aspie boy did not want to leave the house at all, but of course my dd with cerebral palsy did! So I have that tension too. Smiley and I did get out for a couple of shopping trips while my son was minded by his Dad and then his sister, but the happy days on the beach seems to be behind us :(

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