Monday, 21 November 2016

A Letter to Gabriel

My most beloved, Gabriel

Today I feel moved to write to you, so this blog posting is especially for you.

You are the bravest, most wonderful, brilliant human being I have ever been blessed to meet.

You have taught me more about myself, about life, than in all my 34 years before you arrived.

This world is very loud and scary at times, yet your hunger to experience life transforms you into a warrior, a champion.  This makes your Daddy and I more proud than we can ever find the words to express.  Because we know how hard that must be for you.

I cannot even begin to imagine how you experience and feel about the world but I hope you will be able to tell us one day.  Or write or type it.  I so badly want to know how you feel about things, how you see things, how you experience things.  I want to know what it is you want.  For breakfast, to play with, for your life.

I know, though, there are times you are immensely frustrated because we don't always understand.  That you try so hard to make your mouth, your body, do what you want it to, only to have it perform differently.  When this happens, please, please, don't loose hope. Keep trying.  And be very patient. The greatest self-achievements come from the hardest work.

I know you must feel very lonely, at times.  

I know you must feel very sad, at times.

I know you must feel very angry, at times, too.

The world isn't fair, my angel.  We cannot always control what happens to us or how people treat us.  But what we can try to control, is how we react to this.  We can choose to react with love. Easier said than done, I know (trust me on this), but try anyway.

Try to be kind.

Try to be tolerant.

Try to be compassionate, even when there are those around you who aren't.

And never forget;  there are alot of people who are wonderful and filled with love.  And that the world is full of unique, different people.  Because being different is what makes life so special.  It is how we learn from one another.  Different is beautiful.  Always remember that. Some people will laugh at your differences - be different anyway.   

I need you to know that you are a beacon of light.  You radiate love.  You are love. And you are loved.  Oh, are you loved! 

More than the sun, the moon and all the stars in the sky.  



No matter what.

With all my love, always

Tuesday, 4 October 2016

The Wonderful Mind of Gabriel

I can clearly recall the day we received Gabriel's, official, diagnosis 3 years ago.

G-Dad and I came out of the doctor's office, gun's blazing, ready to face the world and conquer whatever lay in our son's way.

We hired psychologists, therapists, all helping to draw up therapy programs to help Gabriel because the pressure for early intervention is ENORMOUS.  We pursued speech and occupational therapy, with gusto. When time passed and not much progress was seen, we changed therapists, had new programs drawn up, all to help our son cope in this world.  We changed schools, we sold our kidneys, and and and.

That thing called time is a real pain in the ass.  She forces reality to poke you in the side, no matter how much you might knock her down with your sword of courage and determination.  You realise after a while, things may not turn out the way you envisioned or had hoped for.  

But then there are these slivers.  These tiny, wonderful, surprising slivers.

Pick and Pay had a promotional event recently whereby you would receive 4 x animal cards per however much you needed to spend.  You could purchase an accompanying album, but Gabriel being the ipad addict that he is, showed an interest in the app for it.  

You would scan the card, the app would pick it up and show you a certain image if it was already scanned or if you were scanning it for the first time.

Gabriel has the most incredible memory I have ever encountered.  He would scan a card, once, and if he received duplicates on another day, would look at them (not even scan them) and simply throw them out the lounge window.  I would then know those ones had already been scanned.

So on one particular day, I saw him continuously scanning the Babushka card, over and over.  When I went to see what was going on, I discovered the card had already been scanned.  After explaining this to Gabriel, he continued to scan it, over and over.  It was only after closely examining the so-called already-scanned card on the app, did I notice what was different :

Once I explained to Gabriel that the spelling on the app was incorrect, was he satisfied to stop scanning the card.

And that just gave me a wonderful insight into my son's mind - so articulate and detail orientated.  It took me a good minute to spot the mistake!  It probably took him 2 seconds.

It was a great reminder to not assume or presume to know what Gabriel does and does not know, or understand.  

To never, ever, give up.

We are now scouting around for a teacher to teach Gabriel to communicate, via typing/pointing.  It will give him a voice and a further peak into his wonderful mind.  

And we cannot wait!

Wednesday, 13 July 2016

One Step Forward, Two Steps Back

On the 16th June 2016, Gabriel celebrated his 6th birthday!

We used to travel back home to celebrate his birthday, but this year we decided to have a very small party for him with a handful of friends.  A fabulous friend of mine kindly allowed us to infiltrate her home with cake, party packs and snacks.  (By the way, she makes the most DIVINE quiches!)

The party was held late afternoon (4pm to 6pm) due to Gabriel's audio sensitivities and the fact he is more comfortable leaving the house at this time.

He was incredibly brave and appeared to really have fun.  He managed an entire hour before indicating to me that he was ready to go home, which we respected.  He did this by leading me to our car, pointing and saying, "Look". So G-Dad and Gabriel headed home while I stayed a little bit longer, enjoying some adult conversation!

I will never forget when Gabriel celebrated his 1st birthday, a friend parted some good advice. She told me to enjoy every day with our little angel as time goes by so quickly and before we know it, he will be all grown up.

And he is growing up.  Fast.  He is becoming so much more 'aware' of everything.  He is repeating words when we say them.  He is applying problem solving skills.  He is becoming bigger and stronger.  At a solid 1.3m tall, Gabriel is often mistaken for an 8 year old.  

But there is a price.

As each year flutters by and Gabriel advances in cognitive areas, so other areas advance too. His audio sensitivities have increased (we are working on this).  And rage has started rearing its ugly head.  And with rage comes incredible strength.  

This is a part of classic autism that is often not spoken about due to fear of ones child being stigmatised.

What one always needs to remember is that rage outbursts are never malicious.  They are caused by immense frustration and anxiety.

So we are approaching this from two fronts. 

The first is to develop a system to redirect Gabriel's frustration (we are going to work on this with his wonderful psychologist).

Secondly, to learn to communicate in a more constructive manner.

Communication is key.  We are focusing on teaching Gabriel how to read and, eventually, type. It is a very slow process but I keep telling him that words are important.  Once he can type his words, he can communicate how he is feeling and what he is thinking.  I know he understands this as he works very hard on spelling and word matching.  

I have a shirt that I often wear that says, "Love What You Do, Do What You Love."  Gabriel loves this shirt and often says random letters from it.

And Love is what matters.  

We continue to envelop our angel with love and we continue to believe in him.  

Because Gabriel IS love.


Saturday, 2 April 2016

Why Today Is Such An Important Day

Today, the 2nd April 2016 is :

I wasn't actually planning on blogging about this today as, I thought, what can I write about that I haven't already written in the past?

But then, I read this article this morning.  And something went *pop* inside of my head.  


Because articles like that are so damaging, misinformed and give out the wrong message.  In today's day and age, where awareness is so much more rife than 10 years ago.

Or so I thought.

I am not a doctor or an 'expert'.  But I am a mother of a beautiful autistic child, so allow me to state some points to ponder over.

Autism is a Physiological Way of Being

Don't get me wrong. I am not sugar coating anything or in denial about anything.  I know there are many co-morbid health issues that accompany this physiological way of being.  I don't profess to know, 100%, what causes this, just like I do not know if autism starts in the womb or from environmental factors, post-birth.

But I DO know that articles like I mentioned above, cause desperate, exhausted parents to follow bad advice and try really damaging therapies.  Anal bleaching is one.  Extreme dieting is another.  Torturous forms of ABA, yet another.  

And what for?  To try and squash a unique circle into a square peg?  

Again, let me reiterate that I am not saying therapies are not needed for co-morbid conditions.  Which many 'neurotypicals' have, by the way.

But to continue spewing this mentality that autistic individuals need to be changed, cured or recovered, is like saying a blind person isn't as important as a seeing individual.

We are all different.  And there is nothing wrong with that.

Imagine if we let our children flourish and grow the way they need to grow and experience this life, instead of forcing them to be the way society demands - the possibilites are endless. 

No, it is not easy, for the parent or autistic individual.  But instead of creating false, unnecessary promises, let's embrace a different way of being.  And help in a more constructive way.

Let's encourage our children, through our actions and words, that difference does not mean less.  

It means an opportunity to develop an open mind and see the world through rainbow coloured glasses.  To learn about compassion and acceptance.  To learn that each and every one of us matter. 

And that is the wonderful legacy you can leave behind in this world.


Wednesday, 9 March 2016

My Most Important Blog Post Yet!

I will never forget February 2014.

G-Dad and I were standing on the grounds of a certain school in the northern suburbs of Cape Town.  This school was for autistic children and it was during the time we were looking at different options for schools for Gabriel (as he was battling at his Montessori school).  We were being shown around, looking at the small classes, first.  For children who were 'lower' on the spectrum, one-on-one ABA therapy was provided.  

We were shown to another section of the school.  This section had small cubicles.  And I mean small.  Each cubicle was sealed off with a door, had a small desk inside with the tutor sitting on the one side of it and the student sitting on the other side.  It was explained that this was to limit distractions and outside sensory interference.  

This particular cubicle had a 15 year old boy sitting in it, staring into space while the tutor desperately tried to get him to look at the colour cards she had layed out on the table.  I observed him and noticed something interesting.  

He was smiling.

I immediately sensed that he found this all very comical and exceptionally boring.  He just battled to communicate this.

After we left this torture of a facility (sorry, but that's how I feel about it) we decided to never enroll Gabriel there.  Yet, something lingered with me for a long time, marinating within my mind.  
The smiling.  The look of amusement on this particular student's face.  

It has been a common belief amongst many individuals (including some professionals) that autistic individuals are not competent.  That they need to be trained like dogs, basically, to function in this world.  

How very wrong those people are.

I attended a lecture last year, hosted by several autistic adults.  They confirmed my suspicions and said something that everyone should always remember.

Always presume competence.

I want you to imagine the following for me:

Imagine you have just been to the dentist and received several dental fillings (awful, I know!). Imagine heading to the store to get some ice water to relieve the dry mouth you now have.  Now imagine trying to tell the cashier something, as you prepare to pay, only to babble out incoherent vowels accompanied by some drool, running down your chin.

Now imagine your fingers don't work the way you want them to.  You try to enter your pin code on the cashier's machine, to complete payment, only to have your fingers splay out, uncontrollably.  And they look at you with a telling look.  That look that they think you are incompetent or slow.  And they begin to speak to you very slowly, using short, simple words, thinking you will understand them better.  Or they ask you if you are listening to them or understand them simply because you are not looking them in the eye while they speak, because you actually find it easier to listen without looking them in the eye.

How would you feel?

Frustrated?  Angry?  Helpless? Sad?  

What about - trapped?

I know it would make me want to bang my head.  Or throw something.

And this notion of 'high vs low' on the spectrum should be discarded.  It should be replaced with 'different physical challenges'.  Some autistic individuals process information slower, some faster.  Some are exceptionally sensitive to sound, whereas some seek out sound.  Some autistic individuals speak very eloquently and some babble like new born babies.  

Does this mean they are intellectually challenged?  No.  It means we need to have more patience and understanding.  Understanding that there are physical challenges and, while bearing those in mind, an individual with a mind intact.

Don't get me wrong - I know of some individuals, autistic or not, who do suffer from brain damage.    

But appearances can be very deceiving.  

Rip away that book cover.  

Remember that a differently wrapped gift box is just that - different, not less.



Monday, 18 January 2016

In Loving Memory

It's been a while since I last posted - almost 3 months.  

It's been a chaotic, stressful and very sad 3 months.  

Firstly, Gabriel's long-time nanny up and left us - no explanation.  Then it was the daunting process of finding a new carer for Gabriel, which was quite intense (as you can imagine, we cannot hire a regular nanny for our precious angel).  I honestly thought I had experienced stress on a whole new level.

That was until Gabriel's beloved Nanna (my Mom) was diagnosed, in October 2015, with an aggressive, terminal form of thyroid cancer, which had spread to her lungs.  So between October until now, we had travelled between my home city and Cape Town, helping as much as possible.  She underwent the most aggressive course of radium treatment and remained positive and inspiring, throughout.  

The last two weeks were the toughest.  Nanna was rushed to ICU with pneumonia and for a week I watched her suffer.  And I prayed and I pleaded and I bargained with the big man in the sky, until Nanna communicated with me that she wanted to go.   

And so I let go.

On the 11th January 2016, as I held her hand, Gabriel's Nanna was called to her heavenly home. 

That afternoon, I told Gabriel why I was so sad and for the rest of the day he was so miserable, so unhappy.  On Thursday morning, the morning of the Memorial Service, Gabriel was near impossible to calm down.  I decided that he and G-Dad should stay at home as I want him to remember Nanna for the remarkable, happy, generous, loving woman she was.

I miss her more than words here could ever explain or convey.  I miss our daily phone calls and our weekly Skype sessions.  Sometimes the wave of sorrow is all encompassing and I feel that I will drown in it.  But then I remember and take comfort in knowing that one day we will be together again.

Finally, to end off, I have to share this little fact about my Mom - she had a wonderful talent for writing poetry.  The most thoughtful, beautifully written poetry. She would often write a poem about someone for their birthday or any other special occasion.  So, in loving memory of my beautiful Mom and Nanna, I wrote the following poem which I read at her memorial :

For My Mumsie
14th January 2016

On the 14th of December, 1944
God sent his best angel to our front door.
A kind daughter and sister was born
With a light so bright;  a Christian, reborn.

 Into a refined and bright woman she grew
Caring for all, whether old friends or new.
A devoted, loving, caring mother and wife
Who sacrificed so much so we could live a good life.

Always giving and sharing what little she had
Touching so many lives and uplifting the sad.
The Barefoot Contessa of vetkoeks and other confections
And to her grandson, Gabriel, the best Nanna;  perfection.

So, no, not an angel but an Archangel was she
Her selflessness to be remembered for all eternity.
And although we are now, sadly, so far apart
Mumsie, you will, forever, be in our hearts.