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Words

Words

I was going to write a blog titled “Please don’t ask me what is wrong with my son”.

But as I thought about it and looked into the situation I encountered this morning, I realised that people aren’t always bad, they don’t set out to upset you, they may just be interested and/or generally care.

I found that I can make a difference by my response and that I shouldn’t get too caught up by words.

Today was a snow day. With school closed, me unable to go to work and a whole day ahead of us, I thought it would be a lovely opportunity to go on a walk!

I have recently moved house, in a new unfamiliar area, and still getting used to it.

I feel like I’m in a new country! I know.. you know.. I’m dramatic!

But reality is, I had lived in my previous village all my life. People knew me, they knew my family, they knew Zachariah.

I could go for walks and people would approach us, chat to Zachariah and ask how we were all doing. I could pop to my friends house.

I could pop down to my Church. Everything was familiar.

So when the snow caused chaos today, I missed being in my old house, I felt lonely and isolated.

The great news was my new friend and her son, a boy in Zachariah's school were also wanting to get out and enjoy the snow. This lifted my mood as change doesn’t always need to be a bad thing.

We got all wrapped up and headed out.

I hadn’t got far when a friendly neighbour and his kids started a conversation with me.

I had always been too busy to say more than the polite greetings, however today I had time to get to know a neighbour a little more.

The beginning of our conversation went a little like this..

“Whats wrong with him?”

“Pardon”

“Whats wrong with him?

“Huh”?

Whats wrong with him”?

“Oh.. you mean what disabilities does my son have?”

“Yea”

Of course I had heard him the first time, but maybe didn’t want the use of words to be true.

As I never look at my son and talk about what is wrong with him.

There is nothing wrong with him. He has disabilities, but don’t we all? I kept my cool and took the opportunity to talk about Zachariah, focusing mainly on his cute face and infectious smile of course!

But I did explain that he has epilepsy, needed a wheelchair and a feeding tube.

The gentleman then went on to tell me how he understood and had been through many challenges and heartbreak himself.

He is a lovely man, and appears to have a huge heart, as he told me to never hesitate to ask for help, if ever we needed it.

But his use of words had put me off and had triggered me to have a defensive manner. Especially when he went on to say this..

“I knew something was bad over there as I always see lots of people coming in and out”.

(They would be professionals, and they would be our support network! I wouldn’t have said it was something bad).

I tried to explain that Zachariah lives a great life, he has struggles, but is always smiling and enjoying the things he loves like family, school, music and of course his walks! I tried to ignore the pity eyes, as I knew this gentleman meant well.

Sometimes we can get so caught up with words. Whether it be words to describe someone/something, words to create questions or words to start a conversation.

Words have to be learnt. So if we meet someone who may have a completely different vocabulary we are bound to find differences in the way we speak, however it doesn’t necessarily mean that we are right.

We all have preferences and different use of language which may differ to the next person.

The lesson I guess I have taken from this is to seek the heart first. It is then we can educate people on disabilities and speak back how we would prefer to be spoken to. With us all wanting different wording, and having our likes and dislikes from the dictionary, we cannot expect everyone to know exactly what to say.

I read an article recently about how people with Cancer would like to be spoken to, and how they wish to be addressed.

Each person had their own preference. Some like to be seen as a fighter, others don’t.

It is similar I guess with families who have disabilities, so I guess it can be difficult knowing how to talk to us.

I guess our mood/emotion that day may provoke more upset too!

If we’re grumpy from a bad night, there’s little chance that we will tolerate someone asking us a question we believe to be wrongly worded.

Needless to say I will continue to talk to my neighbour and hope that over time they will begin to pick up on my words and use them :)

If not I will continue to focus on the heart behind the words! :)

Much love,

Rochelle,

My Daily Miracle xx

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Meet Our Blogger

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others. I am an active parent who's working hard to make Zachariah's world more inclusive for him. I like to look at the positives and celebrate everything, but I'm also not afraid to show it how it really is when life gets tough.

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