Tuesday, February 26, 2013

What not to say

Often you can feel it in the air an awkwardness exists too strong it is tangeable. When presented with special needs often people don't know what to say or they say what they think will help. This post I am going to bust a few sayings that drive us parents of special needs crazy!

1. God doesn't give you more than what you can handle.

Now I completely understand where this saying comes from, there is a verse in the bible that  talks about temptation and it refers to how God will not allow us to be tempted beyond what we can bear. This is referring to temptation, not our situations, lives. Personally I find it difficult to comprehend how we are meant to handle childhood cancer, the death of a partner, marriage breakup or having a child with complex needs. The whole point is in my opinion is that we are not meant to handle this, and to expect anything less is not allowing people to own the emotions they are feeling. Anyone going through a tough time can actually feel guilty for not being able to cope which I think is the opposite of how we are meant to feel.

Now while I am at it, I'm also going to attack the other myth "that they were given to you for a reason", honestly it gives the impression that there is either a super league of parents who are out there solely to be parents of those children. Or worse that the reason is that as a person or a parent we did something terrible that is the reason why we were given our child. You can see the vicious cycle. On the other hand I have heard an appropriate version of this is that "I don't understand why good people and good parents go through situations and diagnosis's like this, but it's happening more and more, God is trusting you with this child". I was on the receiving end of this comment and it reassured me, it said I don't get it, I don't like it but it's happening more and more. 

2. The minimisers

Honestly this hurts the most, you bare your soul to someone or a complete stranger and reveal what is wrong with your child and you are met with the following responses:

- he looks fine to me
- he'll grow out of it right
- lots of kids do that
- he doesn't look autistic 

This is just the tip of the iceberg, in an attempt to make you feel better and for most people to feel less awkward these types of comments are made. I do think honestly they hope for us that our situation is not permanent, or they try to reassure us that our child looks normal. At time we are just asking for some understanding of how it feels, to get things out in the air or even to help you not judge our child for their behaviour. 

3. The parenting police

These responses are the most frustrating and honestly usually a bit old school as well. People encounter a meltdown or other behaviour and are dismayed with what they see. 

- cut the apron strings
- all he needs is some discipline
- back in MY day...
- all he needs is a good spanking

There are so many assumptions made about parenting and special needs. These comments in themselves say the folllowing: you are a failure as a parent, why don't you control your child, I could do a better job at being a parent, your child does not have a diagnosis they are just being naughty it's all your fault. This is what we think in a situation where we are confronted with an opinion like this: you really have no idea what it is like to be me, don't you think I have tried EVERYTHING for my child to behave well, he/she is trying so hard to cope in a world that doesn't understand them and they have had enough, what about DCP (in reference to the spanking comment), in the middle of these situations sometimes we do wish the ground would swallow us up live or we are just trying to get the shopping done so you can eat something healthy tonight. 

4. Joe Blow has this and the solution focused advice

Some conditions get this more than others and I have to admit I have heard it more of autism than any other comments like "like the rain main" and my sister's husband's cousin has this are just the beginning. In the world of information, documentaries and the internet there is a lot of information and parents of kids with special needs get a lot of advice on how to cure their child of their diagnosis. Wouldn't we love it maybe, but does denying the problem make it better nope. This can be really difficult to apply but a little less advice is great if people aren't asking for it. Instead of offering advice when a parent shares their heart, just listen. We don't have to say ANYTHING we can just listen and try to understand, mirror back to that person what you think they are trying to say. There are a few benefits to this we really needs awareness of disabilities in our community so understanding is the first step, secondly parents can feel isolated and a listening ear can be really helpful. 

What can you do?

Now I know I probably have pulled the rug out from underneath your and you are wondering what do I do now? This will help any parent:

- Make a coffee date with us, we would love you to catch up with us even if you have to bring the cake and coffee to us.
- Offer to babysit or take our children out (we know it's big)
- Be normal with us whenever possible and do a bit of reassurance when we are having a bad    week or our child behaves badly in public
- Have us over for dinner every now and again (or for some kids bring dinner over)
- For the guys out there, please take the Dads out for a round of golf or another appropriate guy activity (note the word appropriate) especially if you are a Dad in a similar situation.
- Help us to look after ourselves this could include going for walks with us, checking in with us often to see how we are coping. 

Last of all I want to thank you for reading this blog, it might be a little contraversial or a little raw. But I guarantee (after a bit of facebook research) there are a lot of parents who have had a lot of things said to them that hasn't helped and cause them more grief and trouble, it's the honest truth. For those who are a friend to us, or a family member we need you in our life, we need community to get through the day to day and to help us not feel so alienated some days I feel like I live in another world or reality plane from everyone else and we need others to come and be in our world every now and again. Not to solve our problems or to fix everything but to be with us and this makes the world of a difference.


  1. Yes! Yes to all the above.

    Plus a No. 5, Nothing at all.

    It annoys me when relatives and friends say nothing at all. As if they don't know, like you didn't tell them your child was diagnosed. I won't name names, but there's one particular person especially, who never brings up the word Autism in conversation. They never ask how he is, they never even annoy us with all the things you mentioned. It's frustrating because all you can do is take is as if they are selfish and self-centred. I could be wrong, but I'm happy to be wrong until they open their mouth.

  2. Thank you for writing this. I do get a little miffed from time to time at people's reactions to my child and her situation. She has selective mutism