Why her? Why us?

We try not to have too many why her/why us moments as it is a slippery slope but sometimes it is hard not to.

I just don’t get why this has happened. We did everything right.

Why her? Why us?

Evie is 2 years and 9 months old, currently non-verbal and being assessed for autism.

We first thought that Evie may have developmental issues early on, around the 12-month mark, when she didn’t start talking, pointing, waving and all the other usual things on the autism “check list”.

However, we did initially think she may be deaf as she had literally no reaction to noise – at any level. Hospital checks determined it was severe glue ear in both ears and it was recommended that grommets be fitted.

We thought that would be the answer, the magical cure, the answer to our prayers and that once fitted she would just start talking the following day.

Those hopes were short-lived as the words didn’t follow and still haven’t.

Thankfully at the moment Evie doesn’t really have any issues with social interaction and she has been at pre-school for just over 12 months and she absolutely loves it there. She would go every day if she could.

Unfortunately, Evie is well behind her peers in a communicational aspect although physically she is just the same.

Evie has an older sister, Nicole. Nicole is 7 and neurotypical. They get on great together.

Evie really loves her big sister but with all siblings – she likes her space and sometimes Nicole doesn’t really get that. But Nicole is wise and mature beyond her years and I think she has had to be, having Evie as a sister has opened her eyes. She helps us out so much.

However by having two children, one without autism it really highlights the differences.

At the same age we had already been to theme parks and cinemas with Nicole. We could take her out to restaurants.

She was off the bottle. She was potty trained and her talking was phenomenal. We have none of this with Evie.

The biggest adventure we manage with Evie is a successful trip to the grocery store.

Evie is very happy and doesn’t know the different – but we know the differences.

We have our good days and we have our not-so good days.

We have the days where she is full of smiles and we have the days where there is lots of moaning and tantrums.

We have the days where she wakes up at 6am and we have the days where she wakes up at 3am.

We have the days where she will lay still enough to receive tickles and we have the days where she doesn’t want anyone coming past the invisible perimeter around her.

But those early mornings and times where we feel she is missing out we find ourselves falling back down the rabbit hole.

Why her? Why us?

I don’t get why she doesn’t talk.

I don’t get why she doesn’t even attempt words.

I don’t get why she doesn’t imitate words or actions.

I don’t get why she very rarely wants or shows affection.

I don’t get why she doesn’t eat more.

I don’t get why she needs/wants things in a very specific way.

I don’t get why she doesn’t sit still, ever. I just don’t get why.

However, as Evie is still young there are a lot of unknowns, so we really hope that as she gets older that the words will come, and things improve. But most importantly of all she is mainly a very happy, smiley, beautiful little girl.

We find Facebook very comforting and have followed many different journeys of children on the spectrum and one important message that I see is that wherever there is a negative try and follow it up with a positive.

So, for everything she cannot do, think of the things that she can do.

Written by, Dan Horne

You can find out more about Evie and her journey by joining her Facebook group, Ausome Evie and Her Autism Adventures.

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