A brave face & broken wings

Arthritis / General

On world autism awareness day. I was one of those annoying parents who bombarded social media with autism quotes, pictures etc. I went to a balloon release I’m Belfast and I put lots of happy pictures for all my friends to see. I spoke of how proud I am at all my son has over come. These things are all completely true, we where excited to spend a day recognising how awesome Eli and all the other asd kids and adults are.

The reality of this diagnosis isn’t always as happy though, its easy to promote awareness but the reality is that people are not aware. So few people understand any invisible illness and having lived with chronic pain, family members with depression and mental illness and autism and adhd in the family I am all too aware how we as people can be very harsh to others without first considering their situation.

When my child meltdown in the middle of Starbucks because its taken me longer to drink my coffee than for him to drink his juice and snacks, I know that its partially my fault for expecting him to manage a situation that he doesn’t want to be in, I know that there might be a sensory issue and I know that people will stare, some with empathy as they’ve been there and some with concern that I cant control my child. These days the stares bother me less and less. I still get stressed as my son is getting bigger and its much more difficult to just pick him up and go home. I am aware his screaming is ruining the peaceful atmosphere and I am aware that while he is like this he is miserable. However we go to Starbucks in the first place to normalise a situation, to enable him to get used to those surroundings, because he likes th juice he gets there and one day his friends might ask him to go for coffee and it will be an environment he’s comfortable with. Sometimes though, I just need to get us all out of the house for a bit.

Its very easy to give in a become secluded with an asd child, in reality with any children as it takes so long to get them ready and out the door. I make a conscious choice to go to places do thing even though I am very aware we might be turning around and coming home in 30 mins. ASD parents also need to find extra hors in the day for 1 on 1 time with their non asd children and for time with husbands/wives/partners so that no body ever feels left out or neglected.

In the midst of this, ASD actually makes our family complete, it is part of who my son is and I wouldn’t change him for the world. we laugh every day, I have no doubt that both he and his sister will do amazing things as they grow older. we are able to think outside that dreaded box (is there anyone left inside it these days?) and we are more understanding of other peoples situations.

So when I post the one millionth autism awareness post on my Facebook wall, its usually because I have related to it and liked it, not because I want to annoy you. I know its up there with the cats on you tube videos and feel free to unfollow I wont be offended, but I will never stop talking about it because when my son walks out my door as an adult I want him to walk into a world where we no longer need to raise awareness because everyone, at least to some extent, understands.



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  • Joanne Rainey

    I admire you for sharing this…I to hope that when my children are older that the world will just accept and be already aware of Asd. I am only to familiar of the stares and explaining behaviour of my two eldest children but it is so true what you say we have to keep teaching them and normalising situations that make them uncomfortable in hope that one day they will find it bearable xx

    07/27/15 – 23:38

  • admin

    Joanne you are doing such a great job with your kids they seem to be very happy. It still surprises me in this day and age how little awareness there really is and how we’ve really made so little progress but I think now with parents like u and me and all the others so determined for our children not to be held back and we don’t just sit back and accept that’s it that things will slowly change for them. I hope and pray that’s the case anyways x

    07/27/15 – 07:57