Autism Island…a parents journey

I am going to preface this post by noting this post is very different then my normal posts. I have waited for some time (with intention) before I penned a post like this because I wanted people to clearly see that I am a positive person that believes in my child and believes that any obstacles we run into are just that and he will persevere and live out a happy, well-rounded life.

I wanted people to know that I am not a quitter. That I refuse to let these challenges break me or impact my family’s enjoyment of life.

That being said, I think there is merit in admitting feelings parents naturally feel when parenting a child with extra needs. I feel it is prudent to let others know they are not alone in their frusteration, their anger or sadness and that just because we may find pain in some of our experience, it does not mean we are not good parents or people.

I also wanted to trust that you, the reader, will not judge me for being forthright with you. Admitting things on paper can be terribly therapeutic but it also puts a gal out there… 🙂

There are just some things that people do not say out loud, nor do they often admit if asked.

It doesn’t mean they are embarrassed or ashamed or that they are saddened or bogged down but more that they just don’t see the value in the verbal expression of the feelings they have.

At times, I would speculate that the spoken words might make one feel that they are admitting defeat, or a resolve to accept things for what they are…perhaps even a refusal to strive for a better tomorrow.

These unspoken words lay so heavy on a mind though.

They creep under the doorways of a happy home and they dampen a cheery day. They choke and suffocate the soul and tarnish the mind and heart. Why don’t we unburden ourselves then you ask?

A valid question. So simple and so innocent.

I wish there were a simple response. Here is my best way to answer…. A guided tour of Autism Island.

Imagine yourself a small boat.

You have found yourself caught in an unexpected storm. You are tossed and rocked on tumultuous waves until you feel as though you have no chance for survival and just then -the storm breaks.

Your engine has been damaged but the rest of the vessel is in good standing and as the sun breaks through the heavy clouds you begin to drift…

In and out of days, you float over the ever-changing waters until you *CRUNCH* hit land and pray silently with a broad smile for the safety of the sands and trees. You are moored on an island.

Population: 1.

Autism island is a place where a parent of a child with Autism lives.

It is the place where despite what the world, our community, our family say we are not openly accepted and prejudice does reign.

It is a solitary place where we find ourselves out of the blue, without anytime to plan or pack.

It is the birthday party we are not invited to or, the outing that grandparents decide not to offer.

It is the sideways glances in the supermarket and the lack of willingness to help in the school system or recreation centre.

It is the snarky comment in a line up on the behavior of our children, and the hints at lack of parenting skills or devotion to our children.

It is the place where our feelings of failure and discouragement breed into feelings of despair and inadequacy. It is where spouses are distant and friends non-existent.

It is where we are numbed after a constant worry of “what will happen to my child”, “will he be ok” “will I be able to do everything he needs me to?”

It is the place that your employer doesn’t care that you MUST be at a meeting or that you just can’t miss a bus drop off. That being depended on takes on a whole different meaning.

“It is going to be ok”  is not the mantra on Autism Island. “I will survive” is not a given.

You don’t get to kick back and enjoy the crystal clear waters, white sands and lovely sunshine on the island either. overtime you try, you realize that you are consumed with the worry of if your child is safe, is he overstimulated, do others find him burdensome and when you stop worrying you have to keep an eye on him ever moment to ensure his safety, that he is happy and feeling nurtured and empowered to succeed.

And just as you fear that all is lost you see a sail on the horizon.

Another ship has found you and is sure to come and rescue you -All is not lost.

From the safety of the new boat, with a companion to offer a warm blanket and a drink, you look back at Autism Island and wonder what you will say about it, you know, if asked.

You already know the answer. Nothing.

The words will still remain unspoken. No one has to know.


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