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.

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 : http://features.cgsociety.org/newgallerycrits/g21/499121/499121_1382023462_large.jpg

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.