When I think of Conor and the future I try to think not too far ahead, thinking instead of small steps of progress.
I am always hopeful of the future but not of my breaking heart.
When I think of what may lie ahead I feel a lump in my throat, anxiety jumps around inside my stomach as if he were on a trampoline, my heart starts to feel a sort of fragile pain almost like a whispering wind whirling around it.
Usually at this point, my mind supersedes my frail heart helping me to focus on something else more present like what I am doing at that particular instant.
That is how I cope with all that raising a child with special needs brings, don’t look too far ahead, focus on the here, the now.
When your daughter asks repeatedly when her little brother is going to talk, or that she can’t wait until he can so she has someone to talk to, it is like a knife to the heart cutting jaggedly at each tiny piece falling away.
I can see how it plays on her mind, she is accepting of what is, but still wonders why/when he will talk, why he has autism, why he can’t go to the same school with her, why her brother is different to her friend’s brothers.
She loves to paint with me in the evening and usually will present me with a beautiful picture of her family telling us how much she loves us.
She sees the world with a naive optimism I wish I could reclaim for myself.
She sees things simply in a matter of fact sort of way, there is always an answer to any question.
She wants to be friends with everyone, be kind to everyone, help me & her family as much as she can.
I have often spoken to her briefly about Conor having Autism, hoping to help her understand on a surface level what it means for him & her as a sister, trying not to delve too deeply just yet.
I knew the day would come when she would ask a lot of questions, I also knew I had to brace my heart for them and answer each one.
That day finally arrived, while drawing a new picture of her family, the questions began to tumble out and I knew it was time to answer them as honestly as I could for a 7 year old.
Mammy, why did God give Conor Autism?
I think he chose Conor to teach us that everyone is different, and we should be nice to everyone no matter what they can or can’t do.
Well I am glad he didn’t give me Autism.
Why do you say that, Hailey?
Well, because I wouldn’t be able to talk & that would be so sad, if no one knew what I wanted to say and they had to guess.
Like the other day in Granny’s house Conor was crying because he wanted to tell Granny something but he was just making sounds and no-one knew what he wanted.
I was sorry for Conor because he really wanted to tell us something and couldn’t.
Well, you know Hailey, that is why you should be so nice to your brother because he is trying so hard everyday and it is very hard for him so if you can help him you should.
I know mammy, I always help Conor even when he runs off with my toys and throws them (Conor loves throwing things), I don’t get mad because I know it cheers him up.
Well, you are being a good big sister minding your brother and letting him play with your toys.
She goes back to colouring her picture, looking deep in thought as she chooses each purposeful color.
I take this time to pace my heart for cracks sure to come as she probes for answers.
When will he be able to talk? I can’t wait until he can so I’ll finally have someone to talk to.
We are not sure when he will talk, he will talk when he is ready but it might not be for along time yet.
Well sometimes I have dreams about Conor, we are eating crisps and he is telling me stories. It will be nice when he talks so I can hear what he sound like. You know maybe we could ask Santa to bring him his voice back?
(The lump in my throat keeps pushing up, up, up and I keep trying to swallow it straight back down so i can answer her.)
Santa won’t be able to bring it yet as only Conor can make his voice work so we just have to wait until he is ready, but that was a good idea to think about asking Santa.
She then stays silent for a good 5 minutes while she looks intently on her drawing of her brothers.
I don’t think it’s fair to laugh about people who can’t talk, it is not their fault they can’t talk yet. When ******* was laughing at school about Conor not being able to talk even though he was 5, I told him would he like it if when he was five he wasn’t able to talk. Small tears were coming down my face when he said that about Conor, when he was laughing, but I made them go back inside my eyes.
(She was picked on at school by another child just before the summer holidays about Conor having special needs - I called to the child’s house and spoke to the parents, their son & it was sorted out)
I am always so proud of you Hailey, you are such a good big sister and so brave to stick up for Conor.
Some people might not understand or like that other people are different, but if we stick up for people like Conor more people will be brave like you and stick up for them too.
At that she presented me with another fabulous family drawing, freshly made with love from the heart & mind of an inspiring 7 year old, a quick squeeze. a kiss and off she runs to her room to put on her Ninja Turtle DVD.
My heart recovers quickly when I think about how brave Hailey is every day; facing a world where so many still treat children & adults with special needs as an afterthought.
I am hopeful always of the future and that hope grows stronger when I think of this generation of children we are raising full of compassion, empathy & love for the vulnerable in our society.
Hailey has taught me for today to be brave, let my heart break a little, let my tears flow alot & be open about the life of a special needs family.
Love you Hails. xxx
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?