Is there something wrong with him?

The conversation went like this.

“Is there something wrong with him?”

Me: “No”

Quizzical look at Jack and then back to me

Me: “Oh, he has Cerebral Palsy if that is what you mean”

….

A year ago I wouldn’t of been able to have this conversation. Just that one question would have made my chest tighten and my eyes well up. My heart would ache with sadness. I remember someone asking something similar once and this is exactly what happened. But people are curious and so I’ve honed my standard response.

However, the other day for some reason the wrong button was pushed. Maybe because Jack was running and playing and laughing with the other kids. Maybe because I was smiling from deep inside as I watched him play with pure abandonment, when my bubble was burst.

It broke my heart to know that it wasn’t his squealing laughter that she noticed. She didn’t say, “Boy he’s having a great time, isn’t he?”, she said, “is there something wrong with him?”.

How do I protect him from this? How do I make him truly know deep within himself that there is NOTHING wrong with him? If adults with an understanding of social courtesy ask questions like this and pass judgement so easily, then what are the children going to say?

We tell Jack that he can do anything if you just try. We tell him that everyone is different and this is a good thing. We tell him that everyone is good at some things and not so good at others. We are trying.

I guess I just have to accept that people will see Jack’s physical disability, I just hope that won’t be the only thing they see.

He is so very much more.

22 Replies to “Is there something wrong with him?”

  1. Jucélem Riquetti de Mattia says:

    Hi from Brazil, I´ve been following your blog for a while and I adore the way you talk with us, your observers. What I feel about you and your child is that he is an amazing kid and you are the best mother he could have, and to be honest I didn´t know that he has cerebral palsy and that means nothing to me, because he is perfect. As long as he has your respect and your care he will be an amazing person because when we have a family who respect us the way we are, we have everything.

    1. You are so right, Jucelem. He is perfect 🙂 Thank you for your beautiful words.

  2. What an insensitive comment! I’ve worked with a number of people who have cerebral palsy and I’ve learned so much from each of them. Ignore people who can’t see your son for the adorable, remarkable child he is. I can’t believe someone could be so rude!

    1. Thank you for your support Michele. Everyday Jack can do more and more. He makes me so very proud to be his mummy

  3. This makes me sad and angry. I’m amazed people can be so insensitive. To me he looks like a beautiful and happy little boy.

  4. I’m 19, and I have CP. It may seem like your son’s CP is the only thing people see, but it’s not. They’ll see his courage, his strength, his love for live (despite his limitations) and his fearless nature. 🙂

    1. Thank you for these kind words Amelia. Those who know him see him as a person, just as unique as the next kid. You are right, a lot of people admire his determination and his strength. To us though, he is just our Jack, our perfect little man.

  5. Kylie D'Alton says:

    This was difficult for me to read Kate. That someone would think there was something wrong with Jack. It says a lot about how this person views the world. It’s also hard to know this is the kind of discussions you are faced with. ADORABLE photo!

  6. Kate, our son has recently been diagnosed with Cerebral Palsy. I read this post through tears as I can identify with your experience. I’m still at that stage of tears when asked about our son.
    I look forward to reading more about your precious Jack.
    Kathy.

    1. Jack was diagnosed last year and it is still hard for me to talk about sometimes. We love Jack for exactly who he is, mostly it is me worrying about him and being fiercely protective of him. People want to know, they want to sympathise and sometimes say the wrong things and it is in these moments that my heart aches.

      I’m so glad you left a comment so we could meet. Sharing our experiences and talking through things with friends and other parents is the one thing that has got us through some very sad times.

      Jack is the most perfect little person, for exactly who he is. We tell him this every night before bed. I’m sure your son will come to feel the same way about himself.

  7. Kate, our son has recently been diagnosed with Cerebral Palsy. I read this post through tears as I can identify with your experience. I’m still at that stage of tears when asked questions.
    I look forward to reading more about your precious Jack.
    Kathy.

    1. Oops, didn’t mean to repost.
      Thanks for the reply.

      I would be interested to know Jack’s journey to walk (and jump!) as we are along that track with physio and therapy for Timmy.

      1. Knowing what we know now, there were early signs. Jack wasn’t able to support himself when he was sitting, he always used one hand to rest on. He crawled around the typical age but then was 20 months before he walked. We took him to see a paediatrician when he was two because his walking wasn’t improving in the way that we expected. I might put this in a longer post, but after quite a few doctors and tests he was eventually diagnosed with CP. We are still waiting on genetic testing to confirm which type.

        It was the diagnosis though which started everything. We couldn’t access any therapy until we had that piece of paper. There is considerable funded support for CP here so we are very fortunate. Getting Jack started with physiotherapy has had the most profound effect on his physical abilities. It was confusing at first but the more I learn the more we were able to incorporate it into his daily activities.

        Yep, think I definitely need to write this down otherwise my comment will go on forever 😀 How old is little Timmy?

        1. Thank, that’s helpful.
          We are in NSW and have recently received the ‘piece of paper’ to access the funding too.
          Timmy is 18 months now but was born at 32 weeks. We knew that being born early we would have a different journey and we were happy to enjoy Tim’s development. He took a while to roll and now commando crawls with speed and is getting Physio to help with walking.
          We are waiting to see the Neurologist in November. The waiting is strange and numbing.

          1. NSW! That’s fantastic, you can access Cerebral Palsy Alliance, that’s who supports Jack and they are AMAZING!!! He has a physiotherapist, Occupational Therapist, Speech Pathologist and Orthopaedic Surgeon all through CPA. He got his orthodics fully funded. He also does hydrotherapy through them. You can also access Better Start funding from the government ($12,000!) for resources and other therapy. CPA can apply for this on your behalf. CPA is only in the ACT and NSW so we are very fortunate.

            Please feel free to email me if you wanted to know any more.
            aneverydaystory.wordpress@gmail.com

          2. Thanks Kate.
            We have our Better Start letter, it really is amazing, isn’t it!!
            We haven’t contacted CPA yet, I must do it soon.
            There was a state funding body the Physio mentioned last week, for Tim’s AFOs(?).

          3. Probably Enable NSW. That’s who funded Jack’s. CPA put the application in for us. You need to register with them first and then pay $100 each financial year that you receive funding.

  8. Thank you so much for sharing this. I just found this through another shared article on Facebook and I shared it.

    I have an adult child with a developmental disability, and I have always been sensitive to that phrase, too. No, there’s nothing wrong with my fun-loving daughter who has a heart the size of Texas. When you stop judging her and get to know her, you will love her. 🙂

  9. Hi Kate,

    Such a beautiful little post and all these comments are so heartfelt. Our son has a rare syndrome called Saethre Chotzen. I have to say that since becoming the parent of this amazing little man my whole perspective on “wrong” has shifted. What is often seen as a disability from society can be, though at times so very challenging, also an amazing gateway to greater understanding, acceptance, knowledge and diversity.

    Instilling that unshakable self worth and confidence is surely one of our biggest concerns as parents. Looking forward to following your journey and finding gems of wisdom.

    Nell xo

  10. He’s absolutely precious. It’s terrible how quickly people forget their manners. Thank God he’s got a wonderful mother like you to protect, teach, and guide him through situations like these.

  11. I am very much inspired by your blog. I am working through the posts and so much admire your thoughtful home schooling practices and lovely parenting approach. I’d like to mention that i only remember occasionally that i have cp.therapy as a child would have been helpful 🙂 but children are so resilient. I’m used to my limitations and rarely give it a second thought. It never stopped me travelling etc. You have such a beautiful child and the world will see this.

    1. Thank you so much for saying so Michelle. He is such a beautiful boy and I just know that the world too, sees his beauty 🙂

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