‘To live would be an awfully big adventure’


I had so many plans for blogs this month. Autism is a massive part of the reason I started to blog. Therefore when would I want to blog more than Autism awareness month?

The crashing reality is that almost as soon as this month started I feel immediately overwhelmed. I have no idea why this year is different. I have always recognised and celebrated even, autism awareness week and month before Elijah or Ben where diagnosed.

I think my issue has been that I have struggled with the reality of Autism the past few months. I have walked Bens depression journey with him and depression is known to walk hand in hand with autism. Helping anyone with depression is extremely difficult but add in the Autism difficulty in processing and reasoning and its all the harder.

We got thought that stage and then Elijah’s anxiety has been at an all time high, meltdowns are frequent, unbroken sleep is non existent. Add into that the fact that he is a dream in school and falls apart the second he walks out the doors. That might sound like a good thing and of course it is in some ways, but its very hard to explain to school to be understanding that hes struggling in general when they don’t see it at all. Or rather sometimes people don’t look close enough. I can see autism in every aspect of Elijah’s life, I see it in how he holds in together in school. Yea he has some friends but those friendships are on his terms and they are with people who follow rules and play the way Elijah expects them too. There is no stepping outside of his comfort zone and I’m not even convinced there is a stong foundation in his friendships. What happens when things don’t go his way and he is left sat on his own?

I think what is so hard is that autism completely dictates and controls our lives, it is a powerful force that over throws anything in its path. I read something recently that said the Autism gene has survived evolution because it is needed for survival. I love that, instead of looking at it as a defective gene its actually a strong gene. I guess I could tell you that looking at my boys though. Both Ben and Elijah are strong and resilient and thrive in adversity and actually find ways to achieve and survive that no one else would even think of.

I love Ben and Elijah with all my heart and I wouldn’t change a single thing about them ever! I would change the anxiety, the depression and the hurt that is all caused by the world around them and the need to be able to fit in a world that has a long way to go in understanding anything other than neuro typical.

Where I have struggled is that I am Nero-typical, I have found myself fighting battles for them, becoming so engrossed and surrounded by Autism that I don’t know who I am in the midst of it. I don’t want to be a hardened mummy, always angry at the world. I don’t want to be a soft parent who makes excuses for my husband or my son. I want to find ways to help them adapt and fit and I want changes and acceptance so they don’t have to change and adapt. I want research into autism but I don’t want them to find a gene and destroy it, I want the pieces to all fit but I don’t want them to think that they are broken. I want to colour the world and light it up blue but I don’t want to forget to light it up pink or yellow or purple. I don’t want to be annoyed at autism terms or sterotypes because mostly people are ust trying to raise awareness. I want Elijah to not have a spectrum condition, why cant it just be simple and one size fits all so it doesn’t feel like an uphill battle to get people to realise that just cause he doesn’t fit your idea of what autism looks like doesn’t mean he doesn’t have it.

And as you can probably tell from that jumble is that I have become overwhelmed and burnt out. I am not nor have I ever been that perfect mummy with all the perfect crafts and buns baking in the oven. I am the mum who cant find the school socks as we’re supposed to be out the door and on the way to school. I am the mum who dreads parents evening because I think ill get told off and I am def the mum who brings shop bought buns to the cake sale.

You know that phrase ‘God only gives special kids to special parents’? like hell he does!! If it worked like that I wouldn’t have any kids at all. I do not have those mummy skills in my DNA. In fact 24/7 I am totally winging it. Every. single. day. WINGING IT.

Ben and I went to watch curious incident , last week at the Grand Opera House in Belfast. It was a wonderful performance and as always a great experience at a lovely theatre, (that theatre is rapidly becoming my happy place). The reality of that play was overwhelming but oddly refreshing. I read the book years ago and loved it, but I think the timing of seeing it was key this time. By the interville I felt thouroghly overwhelmed and was in tears by the end. It hard t watch something that’s not all that far from your own reality. Ben struggled when people laughed and I reminded him, how ma ny times we have struggled to keep a straight face at what Elijah has said. Ben is also the funny one in our group of friends. Being able to pull back from the worlds game playing and see the world differently is refreshing and yeah sometimes hilarious.

As part of Autism awareness month the actor Richard Mylan was part of a programme, Richard and Jaco: life with autism. I have been aware of Richard’s work with action for autism, (came across this by accident while doing some twitter stalking after waterloo road). Richard’s son has autism, now I love the way Richard speaks about Autism and how he talks about his son from having followed their journey for a year or two now. What I loved about this programme was Richard’s aim to help Jaco be independent, to equip him with life skills.

This hit me, this is my aim, this is what Ben and I work towards every day this is what every battle and struggle is for. Yea, my boys shouldn’t have to fit in but the reality is they need to be able to navigate life, maybe by the time Elijah is grown up the world will be a different place. Obviously I am blessed in that I have a husband with Autism. Ben only got his diagnosis two years ago, he didn’t get to access services, he didn’t get to develop coping mechanisms and he wasn’t understood at all grown up. Ben is still successful, he was done so well in life, despite all of the hurdles! Things have been hard for him and a lot of the source of his depression comes from those struggles but how much can Elijah achieve WITH support and services and coping mechanisms and life skills and understanding and awareness.

This journey is hard and very overwhelming, sometimes I just don’t want to walk it, sometimes I want life to be simple and straightforward and yea ‘nero typical’, then I remember how unbearably boring that would be!!

No matter what way this journey goes, I know without a shadow of a doubt, my boys can be anything, will be anything, are my everything.

Comments are closed.


  • Angel

    I wish I could give you a big hug right now!
    I feel this way a lot of the time too and it’s hard, so hard at times. Then it’s amazing and we are laughing about something silly and all the upset is forgotten.
    We will always try our absolute best for our little (and big!) warriors.
    Keep smiling, keep believing, you are doing an awesome job, beautiful lady

    04/29/17 – 14:57

  • lou

    I thought this blog was about my life with autism eli and tom are very alike. your a amazing mother hun.

    p.s. i winging it 2

    great blog as always

    04/29/17 – 19:39