The Birth of a Beast

About two months ago, Gabriel headed off to school for another fun-filled day with G-Mary Poppins.  The garden service were there that day, as per usual.

However, this particular day, Gabriel became hysterical.  He was overcome by fear, shaking, saying our names as well as the word, "careful" over and over. G-Mary Poppins managed to calm him down and, soon after, brought him back home.

On this day, a beast was born - Anxiety.

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Since then, Gabriel has been plagued by anxiety.  He is on, constant, high alert to certain sounds - cars, trucks, motorbikes, lawnmowers.  If he hears a truck riding up our back street, he starts to panic. If a car parks in front of our house, he melts into a full blown anxiety attack.

He was even on medication for four weeks, after 3 different doctor consultations, because he was constantly clearing his throat (we thought it was a sinus/throat issue) - it appears to be a tic that he has developed, complements of the Beast.

After a 4 week break, we attempted to take Gabriel to school again, knowing the garden service would not be there that day.

Big mistake!

It ignited a full-blown anxiety attack as soon as Gabriel realised where he was heading. Upon arriving at the school, G-Mary Poppins met us at the gate and took him back home, immediately.

He retreats to his bedroom now, coming out to join us only in the early evenings (when it is quieter and darker).

He refuses to even play in our garden anymore, or to jump on his beloved trampoline.

It is heartbreaking to see Gabriel engaged in this war with the Beast and horrible to feel so powerless in helping him!

Every day is now a momentous challenge for him.

We are encouraging him to venture out, taking him on short outings and getting him more active (he loves swimming at the gym).  We have also made the very difficult decision to return Gabriel to homeschooling.

We will help Gabriel to conquer this Beast, in a, hopefully, non-chemical way.

We know it will be a long road, but we will do it.

Wish us luck!

The Day Gabriel Told Me He Loves Me

Gabriel surprises me, every day.

Make no mistake, this is not because I undervalue my son's remarkable abilities, but because I never know when certain occurrences will happen (bye-bye milestone charts).

And, boy, when they happen, they are deliciously glorious!

As most of you know, Gabriel is classified as non-verbal (although his daddy and I prefer the term "pre-verbal").  This means, although he repeats words, some clear and some not, there is no actual, fluent, contextual, exchange of conversation - well, not that we can always decipher.

But today Gabriel surprised me.  Big. Time.

As I do each morning, I leaned down, hugged my champion and said "I love you" as I was heading off to work. 

Immediately he responded, "luf yoo oo" (love you too).

Yup, you read correctly - my son told me, for the 1st time ever, as clear as day, that he loves me too.

file source : http://hqwallbase.com/images/bigest/1280x1024_jump_for_joy-1580039.jpg

I shrieked, "thank you my boy!"  

A smile, bigger then I have ever seen, emerged on Gabriel's face.  He probably thought, 'finally, my old lady understands!' ;)

How did it make me feel?  After waiting 5 years to hear those words I felt like 

I'd won the lotto, while covered in puppies, watching the emotional rollercoaster movie, What Dreams May Come!  

In other words, the best feeling in the world - EVER!

Happy 5th Birthday, Gabriel!

Happy 5th Birthday to our most precious little angel!

Gabriel's Nanna wrote a very special poem (she has a great talent for that) that really says it all:

I want to take this chance to say

A very, very happy 5^th birthday.

We waited so many long years for you

So with great excitement we heard the news true.

A special much loved baby was on the way

And this I can tell you just made our day

When you arrived you brought such joy

For you’re such a special, happy boy.

Your Mom and Dad are the ones who know

How often you kept them right on their toes.

Up at night ‘cause of the “cholic curse”

But it soon passed as Mom’s a good nurse.

G-Nanny and G-Mary Poppins all played a part

In giving you such a wonderful start.

From watching you daily and keeping you safe

To counting and colouring and building with haste.

So now you are able to go to school

And they are teaching you with wonderful tools.

And so, my angel, I want you to know

Although we’re not with you we love you so.

Your beautiful eyes and happy little face

No other can ever take your place

We’ll all share your birthday together with you

May your year ahead hold good things for you.

And when you think we are far apart

Remember, Gabriel you’re right in our hearts.

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."