What does a label mean to us?

Something I never wanted our son mistaken for was 'naughty'.

From very early on it was clear he was a well behaved child.  He was a rule follower and, anyone who knows a young person with Autism Spectrum Disorder will know 'The Little Policeman' who lives with them. The individual who reports when rules may have been broken. Rules are important to people on the spectrum, very important because they keep things organised and when everyone is organised, then we're all okay.

When he went to school, I knew he was going to struggle to understand what people wanted. Processing language was difficult for him, following directions was difficult for him and in school, we spend much of our time listening to people and following directions. 

Was he going to be called naughty when he didn't complete a task because he'd missed everything that had just been said? Not because he was being naughty, but because he didn't have the ability to process everything, well, not yet.

Did I want my son to have a label? No, not really.

Did I want to understand why he did the things he did? Absolutely!
  

So before that label, what was it like for us?

Before his diagnosis, I was "That Mum", to the teachers.

Before his diagnosis, He was babied by that Mum.

That Mum, needed to be more firm, structured.

That Mum didn't know what she was doing......

And

That kid was terrible and naughty.

When he didn't understand which book he needed to get he was told off and had to sit in the corner.

When he struggled to write the numbers 1 - 100 in the little squares he was kept in at recess.

I was told I had a naughty child..... :(

Today his recollection of early school years is..... 

 "Mum, I was confused at times when I went into time out. I understood that I'd done something wrong, but I had no idea what I'd done wrong. I still don't."

What is a label to us?

When he was diagnosed with Aspergers,  it was almost a relief, an answer.

I remember saying to the specialists, "You can call it Fried Frogs Legs, for all I care, just tell me how to do the best I can for him."

I walked out of the specialist office that day, with exactly the same boy I'd walked in with...but now I spoke his language.

For us, a label was like a street directory, it gave us directions, information, orientation, understanding.

Better yet, we could give a copy of the street directory to the teachers and anyone else who worked with him, so they could understand him a little better too.

What a label is not to us......

For us, it's not an excuse.

If you want to do something with your life, you can, you can find a way.

If door A doesn't work, then lets find door B.

Use your strengths to support what you don't find easy to do.....isn't that what we all do? 

 
Nick Vujicic, an inspirational individual, reminds us that you can do anything if you just keep trying, picking yourself up and having another go.

We are all unique and we are all normal.....

In our home we wouldn't have it any other way.
 

What do I wish?

I wish people didn't need the label, 

             I wish people looked past the quirks, 
                                                         the difference.

All we've ever wanted is patience and understanding.....

All anyone, whoever they are wants, is patience and understanding...

  

Why am I different from the other kids?

The question of diagnosing and labelling a child with a disorder is an interesting one. The idea of informing the child about their diagnosis is another.
For a parent, it's an anxiety raising situation where you know you'll tell them one day, but how you'll do it and when is given more thought than some may realise.

I was working with a 12 year old student one day who was struggling to understand what we were learning, he was an Aspie, 'non disclosed'.
He had a label of Aspergers, however, we had been informed it was to reamain undisclosed to him. He'd been told he 'some things were hard for him', that was all he knew. His parents were doing what they felt was best for him and really, they knew him better than anyone so had the right to decide if and when they would disclose the information.

On this particular day he sat back in his chair and shook his head,
                     'I don't get it....nup, I don't get it'.
He said it over and over, and then he tried to explain it to me,
                                     'You see, I'm just a bit dumb is all,
                                            I just don't get things because I'm a bit dumb.'

At the time, it was one of the saddest things I'd ever heard a child say....he wasn't dumb, he was far from it.
          
What I wanted to do was gently explain he has something called Aspergers Syndrome. That this syndrome made some things hard for him BUT, made some things easy for him.

I wanted to tell him he wasn't the only person in the world with Aspergers. I wanted to share with him that some of the most inspiring people in history, who had invented the most amazing things, had aspergers just like him......but I couldn't.

Despite all his skills, his talent, his potential, he saw himself as dumb. :-(

When you listen to adults who are diagnosed with Aspergers in there 30's or later, they seem so angry.

The following is an excerpt from "Letter from an Adult Male with Asperers Syndrome" by Richard Rowe.

When my son was diagnosed as having Asperger's Syndrome, I was able to read some of the literature regarding his condition. Upon reading a couple of books it soon became apparent where the root source of my own problems lay and subsequent investigation proved these suspicions to be well founded.
At first my reaction in regard to myself was one of relief at finally having some kind of tangible definition for what I had been feeling all these years.

The relief was soon replaced by mixed feelings of remorse, frustration and helplessness. For a while I felt "ripped off". I felt that 40 years of my life had been stolen from me and that, had I known about ASD from the beginning, my life could have been vastly different. Maybe I could have understood myself a little before now and maybe others could have too.

http://www.aspennj.org/pdf/information/asd-articles/a-letter-from-an-adult-male-with-as.pdf

Knowing, is it better than not knowing?

and

Is it with knowledge that we can....

Take the Dis----out of Disability

and turn it into

Ability

What is disability really?

Are things hard for some people because we take care of the majority?

For Richard Rowe, knowing was many things, but it's his feelings of being cheated out of 40 years of his life that make me sit up and take notice. It's this that has me thinking, is it the sooner they know the better?

How must it be to discover there were answers to the questions he had?

Answers that made sense?

How would he have felt about himself for all those years if he knew there was a reason for his social awkwardness?

How would his life have been different? What would his perception of himself have been if he'd had this information?  What would his picture of himself have been like? 

What would he have done, could he have done, if he had understood himself better?

In his letter he says he thought of himself as socially retarded.
Would he have thought of himself as socially challenged if he had known?

Socially challenged seems like a positive way of looking at the difficulties he faced, socially retarded is such a put down.

Would it have been easier for him if he had understood himself, come to accept himself, at a younger age?

We made the decision to tell our son when he was ready, and we figured he'd be ready when he asked.

And so

He asked us one day......

Why am I different from the kids at school?

He was eight years old.

And so we answered the question.....

I sat with him and explained what Aspergers was, that it made some things tricky for him.

Then I began to highlight all the things he could do because his brain was wired the way it was.

Don't get me wrong, I didn't coat it in sugar, I let him know what it was, why he was like he was and how we needed to work together to help him grow up and be a part of the world.

I told him that was okay, because everyone found some things difficult and some things hard and the trick was, to use the skills we have, to help us with the skill we have to work harder on.

We talked for a while, he asked questions, I answered them.

When we were done he asked,   Mum, can you cure Aspergers?'

My heart skipped a beat. 'No', I answered, 'we can help you to learn things but we can't cure it.'

His answer was priceless.  'That's good then, because I like my Aspergers, if I didn't have it, I wouldn't be able to do the things I can do. I really good at drawing and I see things people don't. I hope I don't lose it.'

His image of himself was so positive and he understood his skills and talents so well, that Aspergers slipped into his quality world. He saw the ability, understood it. He knows, and still does, that while he has trouble with some things, mostly the social part of life, he can do some very amazing things and in that he sees himself as,
                                                   Able....

The things we want for them, are they really for them?

When our son was in year 10, I could sense the stalling in his learning. 
                  He wasn't going to move along with his peers. 
                           Education became academic, university focused. 
                                           He was going to stagnate if we left him there. 

He wasn't enjoying the learning environment, the confusion of adolescent friendships. His teachers didn't seem to have the resources, either within themselves, or within the schools system, to support him. The bullying policy seemed to be a piece of paper the staff could refer to but never really enforce.

He had come to a standstill.

So, with his direction....he always had a say, and his schools agreement, we began the process of transitioning him across from high school, to a senior college. Initially it was part time at both schools.

He really loved it. He loved the subjects, the choices, the quiet adult environment, and the lack of unpredictable students. Interestingly, the feeling that the teachers were his friends.

Then he made the decision, when he was ready, to move across full time 12 months later.

At this college, he was a little fish in a big world so he became the focus of a fantastic counselor who took him under her wing. He had access to subjects that were more interesting to him than modern history. The curriculum seemed to be better suited to accommodating special needs.....It was user friendly and made sense. In a system that isn't overloaded by the monitoring of student behaviour, it all seemed easier. Lets face it, if you're an adult at school and you don't behave properly, you're told to leave.   Act sensibly or go.


What he gained, besides accessing learning through subjects he loved and understood, was survival skills he was learning.....life skills.

• How to read a timetable.
• How to be at class when there was no bell to tell him to go there. 
• How to negotiate with a teacher.
• How to catch a bus then get on a train.
• How to wait in line without worrying someone will throw a coke bottle at his back.
• How to relax in an environment where he wasn't a victim.  
• How to ask for help.

It was Adult....perfect for an Aspie who would come home from school and ask often, 

"Why are those kids  mean to me? I hate it, it's just stupid to do those things."


He sailed along beautifully in the adult environment studying with fellow students varying for his age to young adult. A great mix.

We were all sailing along happily, except for the day that would have been his last day of school.


You know that day?


The day of celebration, the one where the kids muck up. Call it what you will but it's that rite of passage day, where you're acknowledged for your years of education, mate-ship is at it's peak and you celebrate what you've achieved.


Our son didn't have a muck up day......on what would have been his muck up day, he was at his college, studying Animation.
He loves that subject.
He's done it 3 times and won a college award for it.

He could care less about muck up day.

His mother however (me, that is) works at a school, has some of his school friends on that wonderful social tool we call Facebook.


Hi mother (me....) saw the messages on Facebook the night before

'Thanks to my amazing friends for the most amazing years of my life'

'Tomorrow I graduate from school, I don't know what I would have done without all of you.'

'Can't wait to celebrate.'

                                         It went on and on

At work, I watched the year 12 students in jubilant celebration, the ceremonies, the fun. I have the privilege of being able to see one of the main celebrations from my office window.


As I watched the events unfold, 
                                         it hit me, 
                                                  like a ton of bricks.......
                                                            It crashed into my quality world.

The place where we keep pictures of all the things that make our world just the way we like it.


My son wasn't going to have muck up day, he would never have muck up day. Oh the grief........It hurt, it really hurt. I'd managed to hurdle many pivotal points that would have caused me grief as his mother in the past. I'd jumped out of myself, disconnected with the emotion and asked myself if he was happy. If the answer was yes, so was I.


All those, birthday parties he didn't get invited to, the one of his only two friends came to.
The traditional team sports he hated, the success of his peers as he marked time in the background.
I rose above all of that, prepared for it, understood if there was grief, it was my grief for me. 
He hated team sport anyway and any time I felt bad for something he wasn't doing, he wasn't doing it because he didn't like it and was happier that way.


Isn't that what we want in the end?


Happy Kids?


But on this day, he was sitting in a classroom at a computer quietly working, (or so my head told me). 

He wasn't going to any parties that night, he'd come home and probably sit at a computer again.


So it hit me, blindside me, I fell apart.....quietly......I fell to pieces!


Not long after I began to have my internal collapse, a colleague walked in, she'd been crying. 

Her son was graduating, it was his muck up day. She was sad because it was his last day of school, her youngest child. The end of an era for her......


Then it hit me.....another ton of bricks......


I was internally collapsing because my son wasn't having muck up day....oh I felt so bad....for him. Or did I?


She was miserable because her son was having muck up day. She felt bad for....who exactly???

What were we upset about, really?


THEN I REALISED, THIS WAS ALL ABOUT ME.

This was one of those 'all about me' grief sessions I said I'd never have.


My son would have hated muck up day, with a passion. He would probably have stayed home. After having a miserable year at school. After being disconnected from his friends because they moved forward and he marked time.


He would have been home, alone and sad.


But, he was at his college having the time of his life. He didn't care what day it was for everyone else.


I slapped myself upside the head after that. The shift back to settled for me was as quick as the move into sadness. He was happy and that, when it comes to my kids, is the most important picture in my quality world.

How much of what we expect for our children is in our Quality World?

How much of our picture for them, is the picture for us?

When is it their pictures in their quality world that take over? 

Is this the time when adolescents shake it up a bit, tug the rope a bit, and stomp their foot on independence?

Is independence simply a person saying, these are the pictures in my quality world and they are important? 


How do we guide young adults so they can fulfill their quality world pictures and stay safe?




The experience left me with questions, lots of questions....


Then I spent some time looking for answers. Some of those answers have helped me, guided me, as he's grown.


I'd love to know what people think, comments and thoughts are more than welcome.

More information on the Quality World can be found at the following link.
 
http://brucedavenport.com/quality-world.html






 

He didn't like change.....So we moved the furniture.

One thing Aspies don't like is change.

It's often the topic of conversation with parents of Aspies...

Said mum to friend over coffee.....
"He loves tropical juice, but only the one in the red box. Then they discontinued it and now our life is hell because he can't have his red box of juice every day!"

For some, it's harder than others, it all depends on the individual, isn't that the same for everyone though?
I had a friend, a lovely friend and our boys went to preschool together.
Her youngest son had Autism. This family had relocated 12 times in 3 years. 12 houses, suburbs, supermarkets.......everything.
We had coffee one day and I asked her.... "how does he cope with the change?"

She thought about it for a minute and her answer was,
"Change is normal for him, if we didn't move, he'd probably wonder what was wrong."

What a piece of golden information that one was.....

They don't like change..........so make change the norm.

Our son didn't like change but we didn't have a need to move.....
                                                                           

so we moved the furniture.

We moved the furniture all the time, in various rooms. The kids were involved in the massive event. Where should we put the sofa today? Should the TV go here or there? Where should the toy box live? They began to have an opinion on which way worked best. They loved it and the best thing about it was, if we hadn't moved the furniture for awhile, he'd tell me it was....wait for it......
                                  

Time for a Change!

It was in his quality world, it fed his needs

In Choice Theory terms

• His need for fun, because it was fun. We laughed, made the cat sitting on the back of the sofa jump when we moved it, (the sofa that is).
• His need for power as he solved problems when it just wouldn't fit the way we thought and he was so involved in the decision making.
• There was love and belonging, we were doing it together.
• Then there was freedom....should we put it here, should we put it there, we can put this where we like. 

In a nutshell, change was good.

What we had done is make change normal.
This became a tool for me, something I could compare to when things were going to be a bit different than we had perhaps planned.

"Sometimes Mate, the couch is in a different place in the room, but it's still as comfortable to sit on as it was yesterday."

And today, as he asks if we should move the furniture around, I realise he is a more resilient individual for whom change is a good, positive and fun thing to experience.

Why do they do that?

I was trying to think of the one thing that helped me understand our sons Aspergers....then it hit me.
Choice Theory....

Haven't heard of it? That's cool, if you run a Google search you'll find a huge amount of info on the subject and Bill Glasser's work.

This amazing thing, Choice Theory, helped me understand a very important underlying principle in our sons behaviour.....when you think about it.....all peoples behaviour.

It was the first two of the axioms that hit home

The only person whose behaviour we can control is our own

All we can give another person is information
These two very important pieces of information ran through my head when our son was exhibiting a certain 'Asperger' behaviour....

I can only control my behaviour.....and
What was what he was doing, trying to tell me?

So began a very long journey......whenever he did something, said something that didn't make sense.....

What are you trying to tell me?????

Interesting, when you take out the assumption about a behaviour, and really observe what you see, unconditionally, the depth of understanding you can reach. It's information money can't buy and information you will use as the Aspie (and neuro-typical) child grows.

It's amazing.

The people who have the most difficulty putting their feelings into words, more often than not, are the individuals with Autism Spectrum Disorder and those alike.

Much like the puzzle of a babies cry, sometimes, we can only tell people what we need by what we do.

Behaviours speak louder than words.