Monday, 26 October 2015

Gabriel's Battle With the Meltdown Monster

All children have meltdowns.  

It's a part of growing up;  maturation of the central nervous system.  As we get older, so we outgrow the typical meltdown.

Autistic kiddies, however, have the added bonus of sensory meltdowns.

What are these?

Well, allow me to give you a visual crash course first :

I do want to stipulate two elements in this video that I do not approve of :

1.  The full body restraint 
2.  The asking him if he is sorry and to apologise

I will explain why, shortly.

Firstly, let me just explain what a Sensory Meltdown is.

I am having a chat with Gabriel.  I am telling him what our plans are for the day.  While doing this, my brain can ignore/filter out the TV playing in the background, the plane flying overhead, the flickering neon lights above me and the rumbling sound of the kettle. 

Gabriel's brain cannot.  

He takes in all of these sounds, smells, sights etc. all at once. This means his brain needs to process all of this information pretty much immediately.  This, in turn, causes stress chemicals to build up in his system due to anxiety.  As these chemicals continue to build up, an eruption is inevitable - his body needs to release this build-up in some way.

The result?  A sensory meltdown.  

Many autistic adults have described it as their body taking control of their minds.  They are often fully aware of what is going on, but they cannot control what their body is doing.  This can include self-injurious behaviour.

Gabriel will bang his head on the wall or floor, or hit himself on the head.  He also tends to thrash out with his legs and lash out at the closest person in his reach.

It's not a pleasant experience for the recipient or viewer, but most of all, it is not a nice experience for Gabriel.  Often, after a meltdown, he will utter the words "oh no," and be very teary.  This is when we reassure him that we know he cannot help it.  That is why I have an issue with point 2 of my Youtube video link.  I don't believe it's fair to make the individual feel even more remorseful than they already do.

Sensory meltdowns can be triggered by a multitude of factors - hunger, tiredness, frustration, pain, sensory overload etc.  And imagine being unable to verbally communicate the aforementioned as well?  

Most of the time, Gabriel will make a certain frustrated verbal sound and then we know to spring into action.  

What action you may ask?  

To try and resolve the problem that is leading to the meltdown, which often involves redirecting him to another task.  But mostly, to protect Gabriel from hurting himself or anybody else.  

This takes me back to point number 1 of the Youtube video that I disagree with.  Again, many autistic adults have stated that they absolutely hate being restrained.  Protect the person from injury while they are in the process of a meltdown, but don't forcefully try and stop it.  There is a need and reason that it happens.

A meltdown can last anywhere from several minutes to several hours.  The latter is usually due to pain or illness.  It can also happen very seldom or very often each day.

The interesting thing here is that Gabriel's mood is so much better after he has had a meltdown (and no longer teary).  It's as if his central nervous system has flushed itself of the stress chemical build up and he is feeling relaxed again.

As a parent, I would have to say that meltdowns are the most challenging part of autism.  They are physically and emotionally exhausting.  

I can only imagine what Gabriel experiences and how hard it is for him!

The scientific and healing community is still looking into methods to help assist in reducing meltdowns (some horrific and some very helpful).

Until then, we will continue to hope, be patient and make our little angel feel safe and loved.

After all, he is our champion :).

Wednesday, 30 September 2015

An Angel Called G-Mary Poppins

Just a spoonful of sugar makes the medicine go down!

Who knows which movie that line is from?

Ok, here's another clue - she carried a bag made of carpet that was always empty yet always full!

Yup, that feel good, sing-along-to, a-bit-cheesy movie - Mary Poppins.

I remember watching that movie as a child and being positively mesmorised by it.  Imagine that - a nanny that was magical AND filled all the requirements of the job advertisement written up by the two children!

They asked for a nanny with a cheery disposition, with rosy cheeks who would play games with them.  One who was kind, witty, never angry or cruel.  A nanny who would bring them sweets and take them on outings.  But most importantly, one who would love them as if they were her own son and daughter.

The day G-Dad and I realised we needed to remove Gabriel from his first school and have him home schooled, was the day the universe posted that very same advert for us.  

The general belief is that autistic children who need assistance, should have a trained Facilitator.  Although that is a lovely idea, it is extremely expensive and for many, simply unaffordable.

So what do you do?

You get creative.  

You look for someone who has all of the above qualities, as well as a great heart.  Someone who wants to make a difference, who has the patience of a saint and the understanding that you can only manage to pay her what you can and not what she is really worth - which is: priceless!

Our cosmic advert was answered in the form of one of the mom's at Gabriel's old school, who was teaching Gabriel how to swim at her home at the time.

We saw how wonderful she was (and still is!) with our angel and a light bulb exploded over our heads - here stood our very own Mary Poppins!

We approached her regarding our new idea and she happily agreed (thank god)!

To say she is wonderful with Gabriel is a downright lie.  

She is FANTASTIC with him!

The endless patience, hard work and love she shows our angel never goes unnoticed and is valued and appreciated more than we could ever express here in words.  She has made such a wonderful difference in Gabriel's life!

Thank you, G-Mary Poppins, for everything!

You are simply Supercalifragilisticexpialidocious!

Monday, 24 August 2015

Gabriel's Anxiety - We Figured Out The Cause

This morning we had a breakthrough.

For those of you who read my last blog, you will remember our describing the sudden onset of Gabriel's acute anxiety and agoraphobia.

If not, feel free to click and read all about it here.

So what is causing this sudden battle in Gabriel's life?

Are you ready for it?

He. can. hear.

Let me explain:

Almost two years ago, Gabriel had grommets put into his ears, as he was experiencing recurring ear infections.  Now, grommets usually last for a few months, at best, before working themselves out of the ears.  

Not with Gabriel. A check-up with his ENT in January this year, showed they were still nicely embedded into his ear drums.  

The problem with leaving grommets in the ears for too long means the eardrum battles to heal and close the hole created for the grommet.  This leads to a permanent perforated eardrum.

So we visited the ENT this morning, to possibly schedule a date to surgically remove Gabriel's grommets (since winter is over).

To our surprise, the Doctor told us the grommets were out, lying loosely inside his ears, and the eardrums had healed, perfectly.  He then went on to explain that when a person has grommets inserted into the eardrum, the person's hearing becomes muffled and dull.  Once removed and the eardrum heals, hearing is fully restored.

I am deducing this happened around about May sometime + the gardening incident happened in June = full hearing, possibly coupled by auditory processing issues and you have a recipe for extreme anxiety.

Here is a video, created by an autistic individual, to explain what happens when their senses become overloaded, just to give you an idea as to the audio issue.

Gabriel screams from the moment he leaves the house, throughout the entire car trip, until he reaches a set destination.  Then he calms down, once inside (unless it is very noisy inside).  We feel he is creating his own audio to drown out external audio, reducing an assault on his senses.

So, whereto from here?  

Possibly auditory training - exposing Gabriel to certain sounds, in a safe environment, where he can control the volume until he (and his brain) becomes used to/desensitised to the offending sounds.   We are also researching supplementation to aid reducing sensory overload (which is a physiological process), as recommended by many autistic adults.

This takes a lot of time and a lot of patience.  

But we're up for the challenge and look forward to the day when Gabriel is able to enjoy being outdoors again, without fear.

Monday, 3 August 2015

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.

File source :

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!

Wednesday, 1 July 2015

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 :

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!

Tuesday, 16 June 2015

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 5th 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.

Thursday, 21 May 2015

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?

Thursday, 2 April 2015

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

Thursday, 19 March 2015

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?

Friday, 13 February 2015

What I love about Gabriel


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

Photo source :

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."

Tuesday, 13 January 2015

Those Wonderful Surprises


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 ;).