GAPS Diet

For anyone interested in the GAPS Diet, this link will take you to a series of online courses and is a good introduction to the subject.

Further information and resources can be found online.

I would recommend seeking professional advice before implementing a new eating plan.

Thanks to Steve for reminding me about this diet, which some families are having great success with.

Living in a bathroom - Sensory Overload

Some individuals with Autism Spectrum Disorder struggle with sensory integration disorder.

The filter that most of us use to bounce off the sights, sounds and smells we don't need, or that aren't important to us, doesn't work the same way for them.

As we take in information, process it through our valuing filter, we decide what is important, what isn't.  I often imagine this filter with a volume dial, it's turned up to the volume we can manage at the time. 

We have a pretty good handle on  how much sensory stimulation goes in.

For example, if you're walking along a street and hear a train in the background it doesn't really matter if you're not waiting for one. If you are, and you're not at the station yet, you start running.

The child crying in the next isle at the supermarket while you're trying to decided between wholemeal with grains or wholemeal without. If it's not your child, doesn't really matter.

To the person with Autism however....it all goes in....all at the same time. 

For them, a supermarket would be something like this..

The child crying, the lights too bright, the sound of the air conditioner, the  checkout, the woman on the intercom asking for a price in aisle 9, the person that brushed you as they walked past, your tag on your clothes rubbing on your neck....everything, all at once...... 


From what my son describes, sights, sounds, smells they all come at him in a wall of information he spends a great deal of time attempting to filter through. 

I know it hurt him more as a younger child. 
I also know he's developed coping strategies as he's grown.
I know it still wears him out.

The impact of this is enormous.

From the food they eat, to the clothes they wear, to where you go.

Our son drank juice...but only the juice in the red juice box....only that one brand. He only ate food with a crunch so his diet consisted of Vegemite toast, crumbed chicken, fish and crumbed potato balls.


Not a vegetable in sight...not a piece of fruit for years. 

The celebration that took place the day he ate an apple was perhaps much larger than it needed to be...but then we had been trying for 12 years to get him to eat a piece of fruit.

It's so much more than a restricted diet though.....

A football game, fireworks display, the bowling alley.....you're general family outing are all problematic.


The following clip explains it beautifully.....

 

I'm a firm believer that if you cater for the  sensory issues, then stress levels are lower and functioning ability higher.
If they can function more effectively , they will be calmer, less likely to operate on a flight or fight instinct 

                                               and they can learn. 

Imagine trying to learn with your system in sensory overload.

Imagine trying to leave the house being bombarded by information.

Some with Autism describe the experience as unbearable, painful.

 

 Read More About Sensory Integration Disorder at this website

Very quickly we decided, our son's sensory integration overload was a priority.

That he needed to be calm to be learning....and to be calm, we needed to keep his sensory load at an acceptable level.

So did it matter that he didn't eat peas? No

Did it matter if his hair needed a cut sometimes? No

At one point were so worried about his nutrition we organised blood tests, and he was absolutely fine. We decided if he can be fine on his limited diet....then we need him to be one thing....CALM

Without the overload and stress he was CALM.

And then we could teach him.

Let the Amazing Shine

I've found, as Cameron grew, I was able to cope with parenting a child with special needs if I reminded myself, often, of just how the world is from his eyes. 

I read books, went to conferences, information sessions and met with other parents.

It helped to remind me that he was always doing the best that he could at the time.

Sometimes I cried.....

But that was okay, I'm only human and I'm always doing the best I can at the time too.

 

These days, there is so much information online some good, some not so good.

The following YouTube clip is one of the good ones.

It was also comforting to me, to remember that this wasn't the long, dark tunnel of parenting it sometimes seemed.

Cameron is a gift. 

I didn't want to change him......

Why would I want to make someone so special 

                                      the same as everyone else?

He has gifts, 

            they may not be the same as others, 

                                                or as obvious.

They may not be gifts that fit into what we call

 mainstream

He may sometimes be a square peg 

trying to fit into the round hole of society.

But

He is a unique individual, with amazing talents. 

He just needed us to teach him in a unique way.

Unconventional for the unconventional.

Why?

Because we need these clever and gifted individuals.

So they can invent, create, make, do,

The next amazing thing.

The following clip highlights some of those 

amazing and gifted individuals.

Why would we want to mess with any of that?

It's okay to let the amazing, unique individual shine..

You may be sitting next to the next Einstein.

 

The Art Of Keeping Busy

I can't quite explain how hard it is to internalise your child's special needs diagnosis.

How hard it is to go out into the world and keep your chin up.

Sure, you put on a brave face.....you do your best to cope out in public....

Trust me, unless you're very close to a family trying to cope with a child on the spectrum, you'll never come close to knowing just how hard it is.

The simple act of getting ready for school and out of the house in the morning, eating breakfast, grooming, dressing, getting into the car.....can be a nightmare some days.

Then the drop off at school and you smile and listen to the stories others tell you about the difficult time they're having with their non ASD child.....

You keep smiling while you crumple inside.

Then you cry all the way home.  

How can you tell them about the last 24 hours?

The tantrum your child had because of sensory overload?

The nightmare of combing their hair?

The disaster at breakfast because the toast was squares, not triangles? 

                        (How could I forget to cut triangles.....???)

You can't tell anyone about that......so you smile.

Which is what I did......

To cope, I begin to harness the art of keeping busy.... 

                        BUSY. BUSY. BUSY. BUSY. BUSY. BUSY. BUSY. BUSY.

Why was it so important for me to keep busy?

I really had no idea at the time I was doing it. But I was so busy, my day was filled with the things I had to do.

I was so busy I only ever ate standing up.

I ended up with 3 casual jobs so I could work around school hours.

I became active in the Mental Health system trying to smooth the pathway of understanding between the consumer and the system (which was pretty bumpy in early days).

Then there were the appointments.

So many appointments, 

Occupational Therapy......BUSY

Speech Therapy.......BUSY

Psychologist........BUSY

Then I was busy, busy, busy at home.

I did my best to fill every minute of our son's life with therapy he didn't know was therapy. 

Shaving cream in the bath for his fine motor skills......BUSY

Playgrounds, for his gross motor skills.......BUSY

The casual conversation that was really speech therapy.....BUSY

The list is endless and consumed my life.

I took on study.....correspondence of course....Too busy to get out of the house.

My calendar was so full of the things I had to do.

Why?

Why so BUSY?

When I look back I realise my behaviour of keeping busy served a very good purpose.

When you're busy you can't think......

When you can't think

                      It doesn't hurt so much.

                                  Because when you think...

                                                             It really hurts.

So I avoided having time to think by making sure I had no time.

No time to catch up with people because if they'd asked me how I was, the bubble would have burst.

No time to dwell on the fact that the way my life was, 

and the pictures in my head of the way I wanted life to be,

didn't quite match up.

As Cameron has grown it's become easier.

Not that he became easier, more so because the pictures that were in my quality world shifted focus, and changed so much so, that things weren't quite so out of balance anymore.

So I didn't need to be so BUSY.

I've had time in the last few years to think about how I've managed, coped, functioned.

I wouldn't change anything.

I was, after all, doing the best that I could do at the time.

Today, working as I do with special needs children, I see many parents doing exactly the same thing.

So busy my heart hurts for them and where they are in their journey.

The only thing I can do is put an arm around their shoulder.

I know it hurts, I know you can't think about it but, eventually it will be okay.

It will be whatever it will be.

We are, at all times, doing the best we can do to cope in any given situation.

At some stage, it's important to pat yourself on the back and remember that.

Remember, you are coping, even when it doesn't feel that way.

Remember, you are doing the best you can do, always.

Remember, you are amazing.

 

 

 

 

The Parent-Ectomy

If you have a child with special needs, then you know about the knot that sits in the center of your stomach for most of the day your child is at school.

For me, as Cam got older, it was a little easier to untie that knot.....but it took some learning on my part to get to that point.....until then though, the stress remains.

For some of us, it ties up the back of our throat, for some it sits in our temples. Wherever your body holds that stress, it's there and it's relentless...so much so that you adjust and become accustomed to it....a familiar friend.

Each morning you drop them off you walk away with a chill,

"Will he make it through a full day?"

"Will they call me to pick him up because they've had enough today?"

Cam had been in school more than a term. This week had been one of his good weeks and I was there to pick him up at the end of the day..

When he walked out of his classroom, looking exhausted, dragging his feet, in his hand was a note which he handed to me.

It was a permission slip for the class school excursion the next week, they wanted parent helpers for the day. The note said they would need lots of helpers so they could split the class into small groups.

Normal parent stuff! I'm in! It was a little ray of normality I was happy to be part of.

So I took a pen from my bag, filled in the note and walked back into class.

I handed it to the teacher.

I said I would be free

                   she smiled and said....

"We have all the volunteers we need...thanks....you don't need to come..." 

And turned away..

I walked out...the note had only been out of the classroom 5 minutes......huh?

What The! ...... Pffhhhht......Really?

The I wondered...

Had I become...."That Mum"???

The one they didn't want on excursion....

The one who, "If she didn't baby her boy he would be fine...."

I knew I'd been wearing a "Mum" hat with this teacher...

I knew she thought I was the cause of all his problems.....despite specialists reports which stated his difficulties clearly, she pretty much said, more than once, that tough love was always best.

I was the difficulty.......Pfffhhht......Really???

Are you kidding me?

I thought I had been treading lightly, I felt I had been filtering information to her slowly, not bombarding her in class, before or after school......despite all this, she had decided I was "That Mum".

She had decided to do a Parent-Ecotmy.

To explain my term.....

It's when you become, 

                   to the professional working with your child, 

                                                       what they perceive to be 
     

THE PROBLEM..... 

She had decided to excise me out of the equation.

I wondered if she thought She'd fix him while he's at school.....

Pffffhhhht.....Oh Really?

Now I know she did this with the  best of professional intention.

But at the time, to be excised from the equation was awful.

As I stood outside the classroom I felt I had two choices.

I could march back into the room and call her on it.....why send the note home if you don't need anyone?

I didn't think marching into the room, sledgehammer style, was going to change the way the teacher viewed my part in my sons life.

Or

I could go with the flow. Take a few days to chill out.

So I walked away, chilled out and went with the flow.

I came to the decision that there was going to be nothing more important than the working relationship between myself and my child's educator if he was ever going to achieve anything.

I decided this was one partnership, a working relationship, that had to work well

And I thought a little harder.

If she saw me as the problem, if that's what she had perceived....what could I do to change that?

How did she perceive me from her point of view and how could I behave differently to perhaps help her to see a bigger picture?

I had to be honest with myself and you know what...?

I was desperately looking after my boy.

I did do things for him I wouldn't be still doing for a normally developing child.

I had very good reasons for doing all those things but then she couldn't read my mind and she had, only very recently got to know Cam.

Now I have no magic wand that's going to help anyone avoid the dreaded Parent-Ectomy, every situation is different.

The magic, I think, is in understanding that all you can do is behave.

Understanding how you choose to behave, in any situation is going to have an impact on the relationships you have with the people around you is priceless.

I didn't go on the school excursion. 

The very next week I started to feed different information to the teacher. Small bits that would make sense.

I asked his Speech Pathologist to visit the school. 

I spoke to the principle and asked for staff could attend some professional development. 

I connected with his support worker and started to pass information through her.

I asked his Pediatrician if he would write a letter explaining Cam's difficulties to the school.

So much of this made a difference and while there were still some rough spots in the road, for most of the time it was much better for him. It was much better for them too.

By the beginning of his second year at school, I felt Cam was as understood as any child at the school. The staff responded to his needs, for most of the time, with best intention and the awareness of those around him grew to the point that I felt he went to school surrounded by a community of understanding.

We were very lucky.

For me, understanding point of view in this situation, being able to step back, close my eyes and imagine how I might appear to others was of amazing benefit.

When I think of point of view I imagine this shape on a floor

 I imagine four people standing around it....

Depending on where you stand around this shape

It could be an E....W.....3.... or an ....M

What you see

Depends on your point of view

The Perceived World

Carly's Story

I had to share the following clip......

It is enlightening..... 

How many of us wonder just what's inside these amazing children's heads...

What's behind those eyes?

What do they think....really?

Why they do this, or that?

And if they could tell us, what would they say?

Seeing this clip reminds me just why, as my boy grew, I chased every therapy avenue....and while I still do.

Because we know, in there, underneath the difficulty,

Is an amazing individual who has a right to be heard.

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.

 

 

 

 

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....