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2-year old with cerebral palsy - how to end the awkward?

AgnesNutterAgnesNutter Posts: 3Member Listener
edited September 2016 in Cerebral Palsy
I was drawn in by the #endtheawkward campaign poster outside a Scope shop yesterday. My 2 year old has recently been diagnosed with cerebral palsy though we've known there was something possibly evolving CP since she was very ill in ICU at birth. 
I'm struggling with awkward - she's just at that stage where people have stopped assuming she's a younger baby/slow walker and are stating to notice the difference. I don't know how best to approach it - I don't want to introduce her and immediately say she's got a condition but equally I can see people looking at her wobbling around/using a walker and too embarrassed/polite to ask. 

She has an older sister aged 5 who I need to model this coping and explaining to as well. Any tips?
Mum of a unicorn-tamer A (age 5) and a 2 yr old wunderkind with CP

Replies

  • bambam Posts: 331Member Pioneering
    Hello IQ sometimes use a walker. It is a little embarrassing with people staring and watching me. I really think maybe a handful of people are hoping I fall so they could get a good laugh but it is really embarrassing. Good luck with your children. You seem like good parents.
  • HealeyHealey Posts: 5Member

    Hi,

    I am not sure I can be much help as in a similar position my son has just been diagnosed with CP and is nearly 2.  I worry people think I am over protective as I hover around him as he is likely to fall. Like you say don't want to announce to complete strangers that he has CP.

    I am also finding it tough as he has a twin brother. What I thought was great about twins is that they were at the same stage wanting to do the same things. I now find that the stage they are at is widening and although they want to do the same things they can't.

    As I say I am no help but thought it would be good to talk to someone in a similar position.

  • hjahja Posts: 1Member

    Hi.  My son is 6 and can manage at last count 6 steps independently.  However when he was smaller I used to try as hard as I could to just be factual, especially with slightly older children.  So with the walking I always used to say something along the lines of he was born too early and as a result his legs are not as good as theirs yet.  I also say things like everyone is good at different things, and for example I need glasses as I cannot see so well, and he has a walker as he cannot walk so well.  Children will often ask, and personally I prefer that as they are all (so far) very accepting.  It doesn't tend to bother them, or to be honest they no longer notice which has led to some interesting times when he has joined in an activity which with the best will in the world he just cannot do.  

    With adults it depends on the context.  Some stare, which to be honest I have just learned to ignore, many ask if they can  help, and I always thanks those people even if they can't, but will always be polite no-one has yet asked what is "wrong" unless I already knew them apart from a couple of people who for other reasons I suspected had mental health problems, dementia or autism, and with those I was polite but said a variation on what I say to children as it was the easiest path at the time. 

    I decided when he was small that if I would answer that sort of question for me, I can answer it for my son but if I would feel that it was an invasion of my privacy to answer it was an invasion of his.  I have also been super careful about data protection, social media and where for example his school can use his photo as I do not want him to be their poster child for inclusion.  Those things he can decide when he is older.  But if I want him not to be awkward I have to practice that in conversations as he is going to need to know and deal with this throughout his life.

    Now he is older I also now tend to tell people that if they want to know something they have to ask him and he is now so used to my answers he has modelled his answers on them, so usually says something like my legs don't work as well as yours do, but we are all good at different things.  That tends to prevent awkwardness but he has to be able to deal with the questions for himself. He rarely says he has cerebral palsy, although he knows he does.  He is more likely to say I am not disabled, I just can't walk, which is also fine if that is how he sees himself. 

  • smallfry14smallfry14 Posts: 1Member
    Hey ladies why do you have to pay attention of what the others think????Live your life,take care of the amazing children we got!
  • garethbeachgarethbeach Posts: 4Member
    my son has CP, he is now 7, I have found that children are generally more accepting of his condition and appreciate his limitations than many adults. there is nothing wrong with highlighting the condition to them, she may find it a help to do so as it can reduce the confusion other children feel about how she may present when using her walker. regarding adults, most are more likely to stare and not appreciate her own self esteem. as she gets older it is important that you find a coping mechanism with peoples awkwardness and reassure her she is normal. if you show embarrassment at other adults stares it could make her feel embarrassed about her condition.
    CP is nothing to be embarrassed about and you should not feel awkward about what others think, you love her and she is fantastic, if people don't get that then it is their loss.

    It will become easier for you over time, it is a lot to take in, but it could be worse.
     I hope this helps.
  • LettyLetty Posts: 7Member Courageous
    Keep going out! supermarkets on a quiet day are great places to enjoy a walking frame we zip tied a little basket on when she was little. I have found people in our community have just got used to us. I know its hard, and I have felt very cross and defensive at times but mostly we don't notice the stares anymore. oh and put a bike helmet on your child if it helps you relax ;-) 
  • HealeyHealey Posts: 5Member
    Hi. I know this wasn't my question originally but have found some of the responses really helpful. Thank you. 
  • AgnesNutterAgnesNutter Posts: 3Member Listener
    Yes the responses are useful. I do find it easier when she's using her walker as it is an obvious badge and people are extra kind and smile at her etc. it's when she is without it she gets comments and funny looks which I find awkward. I agree that kids are the easiest. They ask outright with no social niceties "why has she got that?" And I can explain easily. And loudly so the adults who are surreptitiously listening in can hear too.

    Interestingly we have now found she doesn't have CP at all she has a chiari 1 malformation. So I'm glad I didn't get too hung up on using a "label" which is now wrong, and stuck to using "she's a bit wobbly".
    Mum of a unicorn-tamer A (age 5) and a 2 yr old wunderkind with CP
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