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My Social Butterfly

My Social Butterfly

I wanted to write about how Zachariah uses his eyes, sounds, body language and charm to communicate with those around him.

It is an extremely confusing time when you go through diagnosis.

We started this before Zachariah was even born, we were told it was very unlikely he would survive, and even if he did, he would suffer with profound disabilities.

In such negative tone, they wrote my sons life off, they didn’t take a moment to consider that he had been living within me for 30 weeks, and was already life.

I almost feel blessed that my husband and I took none of this, and took no time to think about our options, we just had to continue with pregnancy and do everything we could to ensure he made it through and went on to enjoy life, without disabilities holding him back.

I remember thinking about how his disabilities would look, and wondered how he would develop physically, not sure why, but this became my focus.

I guess in my naïve way of thinking, I saw physical abilities as the most important development.

Fast forward 5 years and I have a completely different way of viewing us a humans, and been blown away by the power of communication, in all of its forms.

It was quite a fast process of diagnosis when Zachariah was born, as there were various findings during the last weeks of pregnancy, however it was a slow reveal of how this would affect his life.

But I used my energy to build a connection with my newborn and loved him along the way.

The first discovery was his vision impairment, and it was something I hadn’t even considered, and it did scare me a little as I wanted Zachariah to see all the beautiful things this world has to offer, however, with the help of Blong Children UK, vision teachers and Zachariah himself, I slowly learned that there is so much more this this life, and unfact Zachariah could see, but he could see something very different to myself and others around him.

We took nothing for granted and became creative. Zachariah began to learn to communicate through touch and sound. He found his own way, and began his own communication journey with close people.

After this, we had speech and language on board, who primarily helped Zachariah with feeding, but also touched on communication.

They introduced us to sounds and the joy of turn taking. This is where Zachariah started to use his voice to communicate key emotions and feelings.

Since then his noises have developed and increased, he now uses different tones, pitches and uses his mouth to create such wonderful sounds to express himself.

He has grown a passion to sing as loudly as he can when in a good mood, and mastered the art of a fake cry when he is being a demanding diva.

It was SALT and Portage team who also started object of reference with us a method to communicate to Zachariah what he was doing next in his routine.

For example when we are going out, we give him his yellow ducky and say "going out Zachariah, going out". This has been a huge success as we build it up more and more.

And then there was the body language. And this is where I am utterly blown away with my son, as he has made his own way of communication using his head, eyes, hands, arms, legs and feet.

He is able to wave his hands and arms to say hello, but also to express discomfort. Only those who take time to get to know Zachariah will be able to tell these two key messages apart. And to make Zachariah even more special, he is quite selective with who these people are, as he knows who gives him the time, and patience and who doesn’t.

He is a 5 year old boy, who has observed relationships and really taken in who his close people are.

I know this because I have been extremely close to him, as his Mummy, and witnessed him grow closer to certain people and close off from those who haven’t given him the time or energy.

In addition to all this, he has really become a real social butterfly, who uses his charm to draw people in.

He flutters his eyelashes, grins, scrunches up into a cute pose and sings as loudly as he could to catch the attention of many. And if you're lucky he may blow you a kiss!

He has recently been described as a Head Boy figure at school just for this reason, as he will talk to anybody willing to talk to him.

He does the calling, then needs you to come into his world, and communicate with him in a way he knows best, using touch, sound and good energy.

This boy is more aware than he's given credit for sometimes.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Rochelle Followes

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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