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To those who “mean well” and don’t know what to say…

03 Sep

Short answer – feel free to ask me anything at all but please do not compare my child to the single person you know with a disability, whose impairment is nothing at like my son’s – and please don’t act like you have expert knowledge on what will “fix” my child, based on your experiences with this one person.

In all honesty, I don’t notice this as much as I used to, or at least I don’t get as upset as I did – mostly because I now understand that people honestly do mean well, but often don’t know what else to say.  My son has left hemiplegic cerebral palsy, a left hemianopia (visual field defect), and epilepsy.  There is no child that has the exact same problems to the exact same extent, and if there was, it wouldn’t guarantee that they would have the exact same recovery.  So – telling me a story about a child you’ve heard about but never actually met, or has a random condition other than CP, is not comforting.  Don’t get me wrong, I love hearing about any and all kids succeeding, especially kids with special needs – of all kinds.  But simply being told a story is not the same as having your child compared to the child who is the subject of that story.  And in my experience, most people are telling you the story because they think they are giving you “hope”.

ImageSo many people try to say the right thing, and I understand that they mean well.  However, especially in the early stages, having a special needs child is emotionally very difficult – I am yet to find out if it gets easier!  Hearing stories of other kids can sometimes have the opposite effect of that which is intended.  Also, it is important to my emotional well being that I focus on what is real and what I can do today.  A pie in the sky comment about something someone thinks may “fix” my child can upset the careful balance that is my emotional state.

When people say “he’ll be running before you know it” what they don’t understand is that having cerebral palsy means that part of Harry’s brain is damaged, and so the muscles in his arm and leg don’t receive messages from the brain the way they are meant to.  This may improve over time , and hopefully one day he will run – but not with the ease implied by such comments.  It will take a huge amount of effort and therapy, and if he ever stops doing therapy to help his muscles, he will regress.

Harry also doesn’t talk.  It is apparently common for kids with CP to be delayed with speech, or for speech to not develop at all, so it is a bit of a (not so fun) game of wait and see, and in the meantime he is learning sign language.  NEWS FLASH: when you give me your expert advice that if I talk to him more and narrate my entire day, that it will make him start talking – it makes me want to slap you.  Do you seriously not think I realise that talking is important, and that I already do that?  I have spent nearly three years speaking all day every day, narrating my every move to someone who doesn’t talk back.  Do you realise that to me, this implies that you think my son does not speak because I am not doing enough?  How can you possibly say that to me when I’ve just finished explaining that Harry attends physio, OT, speech therapy, and regular neurologist appointments.  Surely if it was that easy to get him to speak then Harry’s entire speech therapy regime would consist of “talk to him more”…??

I know people often don’t know what the right thing is to say – I am around special needs kids every week, none of which have CP, and I often don’t know what to say.  I stick to “how’s it going”, and try to ask questions rather than to offer solutions for things I don’t know much about.  Most of the time we (parents of special needs kids) like being asked questions – it offers us a chance to talk about our concerns, but more often it is an opportunity to speak proudly of our child’s progress.  We want you to understand what our kids have to overcome, and to see how far they have already come and be as proud as we are, not to try to fix things for us.

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4 Comments

Posted by on September 3, 2012 in Uncategorized

 

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4 responses to “To those who “mean well” and don’t know what to say…

  1. Meryl Reardon

    September 3, 2012 at 5:12 am

    Tina, I think you are doing a wonderful job with that little boy and you’re teaching all of us who read your posts so much. Chelsea said what a gorgeous wee man he is. You keep it up.

    Thank you for the flowers you sent to us when Jeff died. It has meant so much to us all to hear from so many people. Friends are very important at a time like this and I really appreciate that you took the time to send flowers and I know you will have been in contact with Chelsea.

    You look after wee Harry and yourself too.

    Meryl Reardon

     
  2. lipstickandplaydates

    September 10, 2012 at 11:01 pm

    Your post hit home. Oh, the inappropriate things that have been sent to me. Case at point is the comment a principal made just the other day. You can read about it on my blog.

     
    • cpkidsmountainclimbers

      September 10, 2012 at 11:13 pm

      I read your blog – it is great! I know a lot of parents of kids with epilepsy – issues with schools is a common thread amongst them, as teachers and principals often don’t comprehend that epilepsy is a disability – they don’t understand firstly how terrifying it is, and secondly that it interrupts a child’s learning, sometimes quite severely. I look forward to reading more of your posts!

       
      • lipstickandplaydates

        September 10, 2012 at 11:16 pm

        To the list of inappropriate things said to me: “God only gives you want you can handle,” “There are kids far worst,” and “She doesn’t have cancer.” Oh, I can go on and on. All of it annoying.

         

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