The Battle Against Ignorance

One of the greatest challenges an Autism family faces, almost daily, is ignorance.  

Ignorance leads to fear and fear leads to, often, irrational behaviour.

A perfect example (yet again) would be of yesterday's visit to the pathologists.

Gabriel has had a bad viral infection for a few weeks that has resulted in the classic blocked nose and horrendous cough.  He has had more medication in 10 days than I have had in two years!  

So yesterday, to be on the safe side, his GP sent us to the radiologists and pathologists for testing.

The staff at the radiologists were awesome!  I explained that Gabriel has Autism and battles to sit in waiting rooms for a long period of time.  No problem, we where whisked through within 5 minutes, accompanied by friendly staff that greeted Gabriel and chatted to him.  What wonderful people!

The pathologists?  Not so awesome.  

Again, I explained and informed them that Gabriel is fine, as long as I explain, step by step, what is to happen before it happens. I could see they were nervous. Fine, this I can understand.  What I cannot understand is what happened next.

The one young nurse stood at the base of the bed by Gabriel's legs.  Suddenly, she blurted out; "I hope he doesn't kick me in the stomach!".

Now, let me state that Gabriel was lying calmly on the bed.  There was NO aggressive or upsetting behaviour before, during (except for crying when the needle was inserted) or after the procedure.

One of my downfalls is my face.  Yup, this face of mine does not hide how I am feeling.  I would suck as an actor.  Clearly my facial expression screamed profanities because she then proceeded to try and justify her outburst, by telling me that she is pregnant.

Perhaps she'd experienced another child lash out and that is why she decided to paint Gabriel with the same brush.

What is NOT ok, is to say this in front of my son.  To basically say she is expecting the worst from him.  That he is to be feared.

What I really wanted to do, was create a new language of profanity to practice on her, but I calmly (I promise, it was calmly!) asked her to remove herself from the room, as there are no guarantees, like most things in life.  

She looked at me, shocked.  

I then asked her to do so, again, after which she realised I was being serious, and left the room.

As we were leaving, I apologised to Gabriel for what that woman said. Many people forget that just because he has Autism, doesn't mean that he does not understand what they say.

As soon as I got home, I e-mailed the manageress and requested she send her staff for training on working with children and adults with special needs.  They contacted me today to advise that they will be arranging training now.

Ignorance is never an excuse for disrespect or rudeness.

And this is why days like World Autism Awareness Day are so important.  

Awareness leads to knowledge. 

Knowledge leads to understanding.  

Understanding leads to compassion.

And where there is compassion, there is love.

And isn't love is the greatest experience of all?

What Is Autism, Really?

Today is World Autism Awareness Day.  

So this year, I am going to raise awareness by the following blog post ;)

What is autism?

According to the The National Autistic Society, autism is a :

"lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours."

Developmental disorders are different to intellectual/learning disorders (formerly known as mental retardation).

Think of a developmental disorder being kinda the same-ish as someone who has had a major stroke.  Their bodies don't respond the way they want them to (damage to the central nervous system), but they are fully aware (the mind) of what is going on.

What is my definition of autism?

Autism is the unknown.  The unpredictable.  The meltdowns.  The obsessiveness. The isolation.  The conversational silence.  The lack of sleep. The stress.  The self-injurious behaviour. The, sometimes, all-consuming anxiety and worry.   The desperation in not knowing how everything is going to turn out.  

You see, I really, really want to hate autism. Not just because of what I've listed above, but also because I see how it interferes with Gabriel's every day life.  I can see and feel his frustration at times.

But no matter how hard I try, something deep down in my gut always overrides these attempts and whispers into my mind that there is much more going on here than any of us realise or understand.  

For families living with autism, we are aware of it every single day.  

For those of you who do not live with autism, I ask that you do something today, no matter how small, to raise some awareness.  Maybe ask a friend if they've heard of autism?  Maybe smile at the parent whose little boy or girl is standing in the check out line of a store, wildly flapping their arms (stimming).  Maybe share this link with families who want to explain what autism is to their kiddies, in a way they will understand.  Every little bit helps.

And, finally, I want to end off today's blog with these words -

A child with autism is simply different.  Never less.  

In other words, just like you and me :

Perfectly Imperfect

Angels for Autism

Thursday, the 5th March 2015 - a very, very special day.

Why so special?

Because, after 8 months of homeschooling, Gabriel started attending a brand new school.  

I am going to bestow my own name on this school (albeit for privacy issues, the main reason is 'cos it's fun!)

Let's call it - Angels for Autism.

So our little angel is attending Angels for Autism, twice a week, along with G-Mary Poppins (his Facilitator).

Bear with me while I digress for a few lines - it's important ;).

This school is the second school started up by an angel I shall call Angel K.  She saw the urgent need and demand for such a school, since there is such a shortage of schools for children with special needs in Cape Town, especially for those with autism.  

But her schools are extra special.  

How so?  Well, Angel K didn't decide to just go with the flow and incorporate a traditional school curriculum.  No.  Instead she took what autistic adults told her and created her own curriculum.  

She listened.    

She has created an environment where all children feel accepted, while learning. A happy environment.  An understanding environment.  A loving and patient environment.  

Angel K has filled this environment with the most patient, tolerant, special angels for teachers and assistants.  These teacher and assistants have our utmost respect because, to be honest, working in a special needs school, is hard, HARD work.  

And the children.  Those beautiful children.  They are the cherry on top of this school.  Spending a little time with them changes your whole perspective on life. 

Because of this great new school, this great new opportunity, Gabriel is happier than we have seen him in a long time.  There are less meltdowns (touch wood!) and he is so very 'chatty'.  He is trying so hard to talk, touching his tongue, moving his lips around, mimicking words.   And he is playing WITH other children. 

We can see that Gabriel has found a place he feels he belongs - a place where he feels loved and accepted.  Just the way he is.

After all, isn't that what we all want?

What I love about Gabriel

Love.

My favourite word.  My favourite emotion.  My favourite delight.

Photo source : http://cdn.pazoo.com/wp-content/uploads/sites/2/2015/02/love-wide-wallpaper-1920x1200-008.jpg

So many different forms of love to relish in and to offer.  And although tomorrow is earmarked for lovers across the world, I am going to use it to celebrate something a little different.  I am going to use it to celebrate what I love about Gabriel.

And what do I love about Gabriel?

I love his smile.  I love how, when he smiles, his whole being smiles.  It is like watching a glorious sunrise.

I love how, when he is sad and the tears flow, he can find solace in my arms.

I love how he will, sneakily, plop a small car into the fish tank and wait for me to spot it.  And when I do, and I say his name in a soft, low, monotone, he runs away, giggling.

And, oh, how I love his giggle!  I swear, it must be the highest vibration of love that the Big Man above bestowed upon him.

I love how he walks past me and will, casually, run his hand along my arm, leaving me drowning in a pool of bliss.

I love how brave he is in a world that assaults his senses.

I love how he never gives up.

I love his mischievousness.

I love his stubbornness.

I love how he teaches me.  Every day and in every way.

I love how he brings out the warrior in me.

I love how he has taught me how to play again.

I love how he will stand and lock his eyes with mine, making me feel beautifully bare.

I love how he effects people.  How his mere presence in a room, has a profound, lingering effect on them.

I love how he shows me the world from a completely different perspective.

I love how unconditionally, intensely and purely he loves me.

I love how he has taught me what real, unwavering love is.

And finally, to end off, I will tell you what I tell Gabriel every night, as he is drifting off into a world, often kinder than ours:

"I love you, Gabriel.  More than the sun, and the moon and all the stars in the sky.  Always.  And forever."

Those Wonderful Surprises

2015.

Wow, already?  

So I have been a little quiet on the blogging front as December was a deliciously busy month.

This involved two trips to different cities to spend time with family.

I will be the first to admit that I was slightly nervous as I wasn't sure how Gabriel would handle such a huge change in his routine.

The first trip was by road and involved an 8 hour journey to reach our destination. This holiday included meeting several new faces and several visits to different homes, as well as an overnight stay at a bush camp.  

Now, you can prepare a child with Autism as much as possible for these schedules - visual cues, audio cues, repetition - but nothing can prepare them on an emotional level.

This trip was fairly hard for Gabriel.  The car trip was a breeze, as he loves travelling in the car but the constant changes, no matter how we restricted them, usually resulted in, at least, one meltdown a day.

The bush camp, however, was a massive success.  There is something about nature and Autism that really strikes a harmonious balance.  One thing that excited me on this trip was how Gabriel responded to the camp's two large dogs. Usually nervous around dogs (long story involving our ex-neighbour's dogs) I saw him standing near the one, brushing his hair - with my hairbrush! But we were so excited to see this interaction, I didn't care about that!

Our second trip involved an airplane journey.  2 hours long.  Now for Gabriel to sit still for two hours is an immense challenge.  So my handbag was stretched to capacity with toys to keep him occupied.  First hour - success. Second hour - we raised some Autism Awareness ;).  

But this is what is interesting - as much as Autism is fairly predictable, Gabriel is, wonderfully, not.  He constantly surprises us.  He surprised us by how well he handled the rest of this trip.  How he was able to, quietly, remove himself from a busy family gathering on Christmas Day and retreat to another room when he became overwhelmed.  How brilliantly he handled the return flight home.  And how, when we got home that evening, there were no meltdowns.  

But the best surprise of all was when he fetched his Dusty plane, some Prestick, spare toy car wheels and modified it to look like this:

Yup.  He did that.  Almost completely on his own.  

Guess it flies faster now ;).

The Little Humongous Things

One of the gifts that Autism gives is one of unexpected surprises.

When Gabriel was originally diagnosed, G-Dad and I decided that the Developmental Milestone Chart had to take a flying leap out of the window.  Not because we don't believe these targets can be reached, but to remove the pressure of WHEN they should be reached.

You learn to take things as they come; the good and the bad.

And when the good happens, it feels like you've won the lottery!

So what happened?

Gabriel has a toy car garage.  Here's a photo of it.

If you look closely, you will see the top floor is anchored on grey poles to the bottom floor.  

However, there are only two grey poles - the other two are in Narnia, no doubt!

The problem this creates is one of balance.  The more cars on top, the more the top floor tilts until it eventually falls off.

So on Saturday, I was busy making Gabriel's bed.  G-Dad appeared in the doorway, with an absolute look of dumbfoundedness on his face.

"Our kid will never be able to go to a traditional school," G-Dad uttered.

"Why?"  I asked.

"Come and look!"

Led by the hand to the lounge, I was then instructed to lie on the floor by the toy garage, near Gabriel.  

"What do you see?" G-Dad asked.

I looked.  And then it caught my eye.  This is what I saw :

For your convenience (and my overwhelming urge to brag) I took the liberty of circling the amazing spot-the-difference area for you :).  Sorry the photo is such bad quality.  I took it on my phone and with much excitement.

Gabriel had built 2 x make-shift poles to balance his toy garage, using his building blocks (note the one in the foreground)!

On.  His.  Own.  

No help, no suggestions from us, his idea and creation - 100%.

Needless to say, G-Dad and I couldn't stop congratulating Gabriel and he was wondering around, with a big smile on his face.

Please feel free to smile about this for the rest of your day too :).

Autism Night Before Christmas

I recently came across the following beautiful poem on Autism Daddy's blog.

Autism Night Before Christmas by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don’t understand

The pleasure he gets

Just from flapping his hands.

“He needs discipline,” they say

“Just a well-needed smack,

You must learn to parent…”

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it’s like

To live with the spectrum

The struggles and triumphs

Achievements, regressions…

But what they don’t know

And what they don’t see

Is the joy that we feel

Over simplicity

He said “hello”

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he’s ten,

He stopped saying the same thing

Again and again!

Others don’t realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don’t see

Is the joy we can’t hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don’t know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don’t get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don’t get it

Or can’t get a clue

Take a walk in my shoes

And I’ll assure you

That even 10 minutes

Into the walk

You’ll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won’t say a thing

You’ll be quiet and learn,

Like the years that I did

When the tables were turned……