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.

  

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.  

Why?

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.

  

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.

ALWAYS PRESUME COMPETENCE.

    

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

14^th January 2016

On the 14^th 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.

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 :

Example Of A Sensory Meltdown

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 :).

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!

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.