No Light at the End of the Tunnel

There seems to be no light at the end of the tunnel when it comes to your special needs child.


With my normally developing daughter, I've always been able to see an image of her grown, as a fully functioning adult. I can see her establishing a relationship, employed, having a family and being happy for much of the time. It's a nice satisfying picture to have as a parent and even though you know things don't always go as you hope, there's a good chance it'll all work out well.


With my special needs child however it's different. I find it difficult to see a future image of him. Like an picture out of focus I can almost imagine it, but struggle to see anything at all. 

With that lack of picture comes a feeling.....

It's hollow, that feeling and it sits in the pit of my stomach. 

It's nauseating and empty all at the same time.

When my son was young I sat in the centre of that emotion. I didn't quite understand it and at the time I could only define it as depression. Every day when he went to school it all seemed to be an endless marathon of effort with no finish line, no carrot, no trophy for him or for me....no gold, no light.

There were times of fleeting flickers of hope, but they were extinguished with the next setback. 

I stayed in that dark, sad place for a while. Sat in the grief and the emptiness that came with it. It was depressing, I was depressing, and while it wasn't a good place to be, it had purpose. In that grief I developed a desire to understand the reason behind the sadness.

I began my studies in  choice theory and learned about needs, wants and quality world pictures, 

I began to understand the pictures for him

                                              in my quality world

                                                               weren't being met. 

With this understanding came an 'Ah Ha!' moment.  An awareness that my need as a mother, was to see him successful and engaged in life, and an awareness that there was more than one way for this to happen.

I began to learn more about Autism. Went to conferences, workshops and meetings. I sought treatments that may help him, focused on the things he could do, his ability, not his disability. I researched all the successful individuals with Autism Spectrum Disorder and the amazing achievements they've made.


I worked to connect with the school so we could operate as a team to better support him.


I became a consumer advocate in local mental health networks and became involved in consumer support for other caregivers.


I found and focused on the things he liked, bowling and karate.
I didn't worry about the things he didn't like, such as team sports.

All that time, what I had really been doing, was filling my quality world with  pictures that satisfied my need to see him successful and happy. I had been developing an understanding of all the ways I could nurture and help him to achieve a fulfilling life. 

I added and added an endless amount of pictures.

             Those pictures filled that empty pit in my stomach.

                        Those pictures turned on a light at the end of the tunnel.

These days when the lights starts to dim

 When the emptiness creeps in I turn within 

and

I shuffle through my pictures 

until I find just what I need

 Choice Theory, The Quality World.

 

 

I got told off by the lady in the post office.....

I'm serious...I got told off by the lady in the post office.

I got told off lots of times, by lots of well-meaning and lovely people who thought they were putting me.....and him right.

But the post office incident is one that sticks with me.....really sticks.

We'd been standing in line......a long line.

We'd waited for people to be served.....a long time.

My kids were being angels, just amazing really given how long we'd been waiting there. I'd set them up in the back of a trolley (shopping cart) on a blanket with their favourite toys and snacks. They'd been brilliant that day and we were almost done.

The next thing I know, the lady in the line in front of me turned, smiled into the trolley then, in a big voice stated.....to my son.....

"Don't you do that to your sister you naughty little boy!"

It was one of those situations where your blood runs cold.....I felt sick as my son looked up, being the angel that he was, totally confused, lets just say she drew the attention of everyone in the room.

Then she looked at me

"See what he did to his sister?" Who sat next to him completely bemused.

Now, what had he done that was so bad to draw the wrath of this keeper of good behavior in the post office?

He had bitten his bottom lip and looked at his sister..... 

I'm not kidding......that was what he'd done.......

Why?

That was what he did before he hugged her.....

That was how he said, "You're really cute, I love you."  Because he didn't yet have the words.

What she saw as aggression, she saw the bite on the bottom lip and saw aggression, I knew that because it could look like that, however.... that didn't make the situation any easier to accept.

So what did I do?

I took one look at her, turned the trolly around and left the post office, to the sound of her saying to the people in the room  

"Did you see what he was going to do?" 

And there were the magic words....."what he was Going to do." 

Assumption....it happened often.

By now I'd had so many well meaning, often older ladies, lecture me on not letting my son do this, or that.

I creatively tried many ways to deal with these numerous situations of having to explain myself.....so many ways in the past,

1. Explain it....My son has Aspergers, so on and so forth 

I valued highly people knowing my son wasn't naughty but just needed to be   understood. On my scales of importance it mattered to me what people thought, about him, about me.

 

2. Snap back at them....Don't say things when you don't know...blah blah...

How rude were they to think I didn't know what I was doing, how dare they judge me. It was important to me what people thought about him, about me.

 

3. Walk away......without a word.

Did I really need to defend or explain anything? Really?

Whatever I did, I realised they would only ever see something from their own perspective, weigh it up against their own valuing filter, decide for themselves how they saw it and it didn't matter what I said or how I said it, they made up their own mind.....

So I walked away

Because

After trying a few different behaviors, after making many futile attempts to get people to understand so they didn't think badly of me, I changed the pictures in my quality world.

What really mattered to me was modeling what I valued as good social behavior and to rant and argue with the general public didn't feel to me, like a good demonstration of social P's & Q's.

Sadly, parents of children with special needs are often put in the position of having to explain themselves for their child's issues and the things they may do as a result.

Sadly, parents of children with special needs are often watched by well meaning individuals, even followed from a supermarket as their sensory child has a screaming meltdown mid-shopping because they've reached overload and all you can do is get out.

In the end, I decided, if I was always doing the best I could do, then that was what mattered.

In the end I realised that the lady in the post office was simply another person who didn't understand, and felt she was doing the right thing, no matter how rude it was.

In the end it didn't matter what the lady in the post office thought.

 It didn't matter what they thought. 

                            It mattered what I knew

                                           So the last option was always the best option.

                                                                                     I just walked away.