It’s not supposed to be like this.

Somebody said something to me recently which really upset me.  It was an observation that I know was not meant in any way to be hurtful, in fact the person that said it probably really believes in the statement – and it is a statement that has been said to me more than a few times in the past decade.

“Autistic children are such a blessing”  “These children are blessed to have you”  “God gave you these children because he knew you could cope with them and look after them”

Now those of you who know me personally will know I do not believe in God, but this wasn’t always the case.  Any faith I may have had, has been stripped away years ago by what I have seen ‘God’ let happen to my children, and not to mention other events I’ve been witness to as a police officer. 

So I question how having a child(ren) such as mine is a blessing.  Surely a blessing would be to live a healthy life unencumbered by disability?  How does God decide these things (should he actually exist)?  How does God choose which child – yes a child for Gods sake – he is going to make life difficult for?  Is this some kind of test, and if so whats the point of the exercise?  What’d the kid do to cop that?

Sure I can cope with these kids, what choice do I have.  While I love my kids, every single one of them and I do not regret having them – had the midwife said to me eleven years ago that a decade later I would still be changing my baby boys nappies, and that he would still be the baby I brought home just adult sized – I have to say that honestly I may have thought twice.

On my eldest Autistic sons 11th birthday a week ago I thought of his birth day a lot, I still have a vivid snapshot in my mind of my husband sitting in a chair in the delivery room cradling his first-born son – I can still see the look on my husbands face as he gazed into his new sons face, so full of hope and happiness.  I know at the time my husband was totally lost in the moment and talked about the things he and his son would do together.  Simple things like playing sport, sailing and fishing – you know, guy stuff – our son is still yet to be able to do any of these things, and probably never will. 

Why are things so unfair? 

I know I know, the world is unfair.  But why do things have to suck?  What kind of sick bastard lets terrible things happen if they had the power to change them?

So back to my well-meaning friend.  I smiled nodded and said thank you, and inwardly seethed.  What do you say to the parent of a child with a disability?  A simple how are you doing will probably be the best thing you can ask.  Without meaning to, telling me I am blessed to live the life I lead makes me question what I or my children did to deserve this?

I lost the ability to see my existence as blessed a long time ago. Sorry.

Not too sure how and if I’ll ever get back to a blessed place.

15 Comments

Filed under Autism, Husbands, Moments, Rants & Stuff

15 Responses to It’s not supposed to be like this.

  1. I’ve had people say that to me also. I don’t take offense anymore because I know how hard I struggle to find the right things to say to others who are in difficult circumstances. I try to find something to say to uplift friends who are struggling without sounding trite or belittling their circumstances. Most of the time either a senseless platitude comes out or I am brutally honest ‘that really sucks’.

    I find it so frustrating when we are at the psychologists or the counsellors office and I’m telling them how I’m struggling and just not coping and I’m brutally honest about all the hard stuff and wanting to know what they can do to help and they say ‘you are doing a great job’. Yeah I’m doing the best I can, but its not working, please I need more help, that is why I’m here in the psychologists/counsellors office in the first place.

  2. Hi Candy, I followed your tweet to this post & I feel so glad and sad that you’ve written it – glad that you have, because people say stupid stuff all the time and it’s helpful to read a post like this, sad becuase people say stupid stuff and that this was said to you. I am a Christian, and I do agree with you – it’s not supposed to be like this, this isn’t the way God wants things to be. Of course, it’s appropriate to grieve the things you don’t have and may never have with your son and yet grief does not diminish the deep love you have for him. Sorry for stating the obvious, I just wanted to say I hear you and thank you for sharing and, how are you?

  3. Pam

    Hi Candy, I admire your honesty so much & this post is very moving. People really can be such arseholes sometimes. It’s interesting that you once had faith in god but you lost it. I lost my faith in god when I lost my brother 14 years ago I too feel that it has been “stripped away”, by James’ death in practicular but by events in the wider world also. The relentless answer that “god works in mysterious ways” makes me so angry. When I first quit drinking I remember one night 8 years ago now being on my hands and knees out of sheer desperation, trying so bloody hard to pray but I just couldn’t hand myself over to something I just can’t bring myself to believe in any more. Much as believe me, I wanted to. I do feel the lack of faith in my life, being brought up in the church by a fundamentalist parent had made me equate faith with the christian god, sometimes I think I should focus more on my spirituality rather than faith in any god, if that makes any sense. I admire those who have faith in any higher power, it’s not something I have managed to achieve since I lost my brother and I don’t think I’ll find it again. I got by on faith in me. Sorry this has gone a bit track, I don’t have any experience of autism and can only imagine how frustrating and hurtful such comments are to you, but your post touched me particularly your comment about your faith being stripped away. Hope I haven’t spoken out of turn xx

  4. Amen sister! We, too, are non-believers, and are irritated with those well-meaning statements from others. While we tirelessly look for the positive in our situation, and dig deep into our well of optimism, there will always be a tiny part of us, locked away, that wishes our son wasn’t born with this challenge/struggle. But we all make the best of it, move forward, and work our butts off. But yes, it’s almost like telling someone with cancer that it’s a blessing given to them, because they’re strong enough to handle it….ludicrous!

    • Thank you. They are well meant statements, and some days I can take them better than others. Today is an other.
      It is very hard to stay positive with not much in the world encouraging you to be so, but I try 😉

  5. Jeanette

    I have heard comments like this many many times over the years and honestly, they piss me off big time every time I heard them. The worst for me was “God does not give you what you cannot handle”. Why on earth people felt the need to say that to me when I was bawling my eyes out in in the midst of one of my breakdowns with housework piling up around me and 2 screaming children running feral through the house drawing on walls and kicking me in the face (literally!) I do not know. But I certainly could not handle anything that had been handed to me. Yes it is a bit easier now than it was then, but boy do I still have my days when I seem to spend all day sitting on the floor in tears!
    I think some of these people who say these things should try living in our world and see how well they can handle it all.

    • Thank you for letting me know that I am not alone in this. While I know people mean well with these kind of comments, probably because they are lost for words, but all they do is remind us of what we have to deal with everyday that not everyone else does. You’re right, a day in our shoes would sort them out. 😉

      • Jeanette

        I think 5mins in my house tonight and they would have walked out with only half a head of hair.

  6. I never know what to say, I kind of still don’t. And often that’s just what comes out… “Oh I don’t know what to say to that”
    But like you I now know the things NOT to say… my most hated responses are:
    “You are LUCKY {yes lucky} your children can’t talk, what I would do for 5 minutes of peace and quiet in my house”
    And…
    “Well the good news is don’t children with Autism grow up to be geniuses?!”
    Excuse me, but WTF?
    I’m still trying to work out the fairness in it all… my heart is broken for their stolen futures, but I still love my babies so dearly and will give it every last breath for them and hope it makes a huge difference. It sounds like you very much do the same.

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