Where does it hurt?

Gwynne - 20151003 -29 - highWhere does it hurt?

Every so often I get a rude awakening that my seven year old is not like other seven year olds. Today was one of those days.

The doctor sat in front of him smiling. “Hi, when did you start to feel unwell? Can I listen to your chest? Where does it hurt?”

Questions doctors ask all the time. Questions a seven year old should understand, have a reasonable ability to answer well and have the verbal ability to communicate to a stranger.

My son continued playing his game on his iPad obvious to us all. At seven he is non verbal.

He is different. But today he was the same as everyone else in that centre. He needed medical attention. He could not wait for his regular doctor to reopen. He was unwell.

And once again I had to be his voice. As best as I could. I can not say how he is feeling. I can not say when he started to feel unwell. So I told them what I could. And that is all I ever can do.

I find myself over analysing everything. Was that behaviour he displayed a few days ago the first sign he might be poorly? Did he not finish his dinner yesterday because he felt sick? Is he sitting in my knee because he is looking for comfort or just because he wants to? How am I supposed to know?

They say a mum has a ‘sixth sense’ but this goes beyond that. When you live with a child who can not communicate the most basic of things such as pain you walk a tightrope daily. I could worry about every bruise, (where did he get that? Has he fallen and I never noticed?) every cut, (is that stinging him in the bath, what caused that and should I find it and remove it in case it happens again?) and every behaviour gets dissected like a science experiment. I become more of a detective than a mother. Or do I just let him be a ‘normal’ seven year old and be content that he is not screaming or being sick today?

My son lives with a silent invisible medical condition. But his autism makes it impossible to know how that condition is truly affecting him.

I could panic every time he is sick. I try not to. A wise doctor told me that statistically despite having a progressive genetic condition he is still more likely to have a common childhood illness such as an ear infection, a chest infection or a virus. As true and as logical as that is I still live with the worry he could be ill because of something much worse.

He has a high temperature and neither the doctor nor us know why.

Where does it hurt?

Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.

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10 thoughts on “Where does it hurt?

  1. ((BIG HUGS)) Has he had any luck with using an AAC app on an Ipad or ipad mini? We use Speak For Yourself. Ike uses it to tell us all sorts of things he cannot say verbally. He has NF1, a submucosal cleft, severe apraxia and VPI. And… he’s a little quirky. 😉 There’s an awesome facebook group for speak for yourself, but anyone can join – even those who are not using an AAC or using a different AAC than SFY. Also check out this blog. Its what first introduced us to the possibility of life getting better. http://niederfamily.blogspot.com/2013/04/an-open-letter-to-parent-of-child-with.html

    Liked by 1 person

    • We have tried several different apps on his iPad for communication and will continue to try this. We are also teaching him some basic sign language but it all takes time and hopefully one day one of these will interest him enough that he will use it to communicate. Thanks for the link.

      Like

  2. You’re amazing, just amazing. You have such a gift for explaining things and conveying your message so simply yet so profoundly. I love your blog and I regularly share it on my FB page for the benefit of many of my friends who have children with autism and other disabilities. ❤️

    Liked by 1 person

  3. Hi
    Thank you so much for writing this. I found it really moving and it touched my heart. You are doing the best you can which is fantastic. God bless your gorgeous boy.
    I felt humble reading this as my son, Tommy (10) Autism/ADHD, doesn’t stop talking and asks constant questions and sometimes I wish he would stop talking.
    All the best for 2016. x

    Liked by 1 person

  4. Pingback: Where does it hurt? | faithmummy

  5. ‘Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.”

    -This statement made me instantly tear up. You are not alone, sending you hugs. Sometimes when I am having a day that is especially harder on my heart, I just ask my son for a hug, because that is the only communication we ever need.

    Liked by 1 person

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