Light it up Blue

Light it up Blue
by Julie
 
 
 
 
 
 
 
 
 
Growing up, kids with special needs of any sort weirded me out. They seemed strange to me; different. Sometimes even scary.

But when I was ten, that changed. I saw kids with special needs in a whole new light.

They say that you can’t criticize something until you understand it. And you usually don’t understand things until it becomes personal. And that is what it was for me.

Of course, it’s easy to read about autism and sympathize, think you understand it, and spread awareness. Especially on days like today (technically yesterday), where there’s an autism awareness day, people “lighting it up blue” – it’s quick to jump to the thought that you may understand what it’s like.

You don’t.

No matter how much you read about it, it’s a whole different story to live it.

I live with a sibling with special needs. Not autism. Special needs nonetheless, and it’s tough.

My baby sister was born when I was ten, and it has been trips to specialized doctors ever since. It has been strangers looking at her strange when they don’t understand what she says. It has been people judging, belittling, and teasing. But here’s the thing: Those people are ignorant – they don’t understand how blessed they are to have been born healthy, free of obstacles, taking their own health for granted.

Care is expensive. GOOD care in a timely matter is expensive. And there is no worse burden than not being able to afford to help your child, especially financially. It comes along with parental guilt – “why was the child born this way, what did I do, and how do I cure them?” I’m no parent, but I’ve witnessed my own. Tears daily after thinking that maybe, just maybe, she could have done something to ‘fix’ her baby but she didn’t. I remember hearing a talk and a mother of an autistic child said that even if you provide everything and break your neck to help your child and give them the best, and they may even overcome many obstacles and show incredible progress but they still have autism and there’s a back thought that she still could have done more. Or how about the toll it takes on the parents in terms of their relationship to each other. There’s a strong emotional and financial toll and although this could tear a family apart, it may also tie a family tighter.

Now let me tell you first hand the effects it has on siblings. Siblings of kids with special needs are often overlooked. And I’d be lying if I told you it’s easy now, was easy before, or will ever become easy for that matter. But I’ll tell you what – she changed my life. She is a living miracle and I’m thankful for her every single day. She has taught me to love, have faith, be compassionate, and mostly, how to stay happy under every circumstance. She is my best friend, my room mate, my assumed-by-everyone daughter, my number one girl. She is the reason I am who I am today and I will never stop advocating for children with special needs because I hope that other people will do the same.

And I’ll tell you something a lot of times people don’t think to talk about – what about adults with autism and other special needs? It’s a huge fear to me everyday about what happens to my sister as she grows older. I could only imagine the thoughts that run through my parents heads as well. What will become of her when she’s an adult? Will she make it? Will she live alone, or get married? Will she ever form her own meaningful relationships? Will she ever start her own family? Who will protect her when we no longer can? (I’d be lying if I said I didn’t have tears flowing down and endless stares into space while I typed in those questions, pondered the potential possibilities).

Kids with autism are not broken. Just because you may not understand what they are saying and how they are conveying a message does not mean that they don’t have anything significant to say. They are still communicating.

If these kids are harder to teach because they can’t learn with the way you teach, teach them the way they know how to learn. Because kids with special needs are just that: SPECIAL. They are precious and no matter what need it is that they have, they matter, and speaking from personal experience, the ones I have got the honour of meeting whether it be children or adults, they are warm-hearted, creative, and intelligent human beings; the most tremendous types of people out there. They are so valuable! Their opinions should be heard and included. And it’s time for society to stop overlooking them as ‘disabled’ or some kind of burden, because they are everything but that.

A lot of the things that kids with autism/special needs do may not make sense to you and I, and it doesn’t have to. The only thing that matters is that we respect that it makes sense to THEM.

Indeed they see life through a different window, but remember that only the best people do. They are different but they are not LESS.

Autism and special needs of all kinds are not the tragedy, ignorance is. Let’s come together, spread awareness, advocate, and end the stigma.

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