Wednesday, 3 October 2018

To Parent An Autistic Child

Parenting is the hardest job.

Yup, it's true.  Ask any parent.

You are responsible for a little life, for nurturing it, guiding it, teaching it, loving it, defending it, nursing it, you name it.

I have had glimpses of what it is like to raise a neurotypical child.  Glimpses with friends and family members who have little angels of their own.

To parent an autistic child shares many common similarities.  

But then there are many uncommon similarities - only those that can really be shared with many other autistic families.

Those moments of having to forcefully hold your autistic child so that you can cut his toenails while he screams, "no, no, help me!"

Those moments when you are so proud he is using those words in the right context even in such a traumatic situation!

Those moments when you have had to repeat back to your child, "shooting Tom", for the 700th time in an hour, or he becomes upset and bangs his head against the wall, in frustration.

Those moments when your stomach is in a knot because you hear his vocalising changing into aggressive grunts and you don't know what will happen next.

Those moments when a neighbour asks how your son is doing and expresses their worry that he isn't getting enough social interaction, making you feel like the shittiest parent and making you question yourself if you are really doing enough.

Those incredible moments when another neighbour rings your doorbell, inviting your son to sit on his motorbike as he knows your son loves it.

Those moments when he is jumping and flapping and shrieking with excitement in a store checkout line, and the person in front of you is staring at him, and I have to control myself not to snap at them, reminding myself that I am not a mind reader.  

Those gut wrenching, soul destroying moments when he is crying and staring at you, mouth open, desperately trying to get the words out to explain what is wrong, only to say, "talking open".  

Those heart-exploding moments when he runs up to you and says "I love you" out of the blue.

Those endorphin-drowning moments of hearing him lying in the bath, giggling and you start to giggle too.  And then you both giggle, insanely, at each other.

Those blissful moments when he sits you down and shuffles through a list of movies on Netflix on the remote, with surgeon precision, to show you what he found and watched today.

Those wordless moments when he flops down onto my lap and cuddles up against me, just because.

Those melting moments when he calls me, "Mommy, open".

Those proud moments when he opens the car door, gets in and hooks the seat belt over himself, locking it in - all by himself.

All I know is, like most parents, whether of neurotypical children or autistic children, we are just trying our best. 

We will fail at times and we will succeed at times.

But most importantly, we will love and learn together.

Saturday, 16 June 2018

Happy 8th Birthday!

Our dearest Gabriel

8 years old today!  I can't believe it.  It feels like just the other day, I held you in my arms and wondered what I ever did to deserve you.  You were a miracle baby, but I will tell you all about that one day.

Today we celebrate your life.  We celebrate what an amazing son, soul and teacher you are.  

You have taught me so much.  Really.  You have taught me how to have more compassion and love for others, regardless of how they present their struggles.  You have taught me patience.  Patience with others but mostly, with myself.  You have taught me tolerance.  Tolerance so that I don't judge another so readily.  Every person is fighting some personal battle.

I see so much more about the world that I never saw before.  How much fun can be had in the smallest experiences.  How language doesn't have to be verbal or predictable.  How to be more observant of my surroundings.  How to appreciate everything.  And how not to care what others think.  

My birthday wish is for you to feel you can be free to be you.  Don't stop telling everyone the different countries in the world at the top of your voice.  Or shouting "shooting Tom" because you love how I squeel back, "no shooting Tom, nooooo!" (he knows I hate shooting video games) and you giggle.  Don't ever let anyone else tell you how you should be or how you should feel or who you should be.  

And my birthday gift to you is what I give every year and will give every year: 


I want you to always know, no matter what happens in this life, that LOVE is truly the greatest gift.  I want you to feel the purest, unconditional, deepest love imaginable.  Because, my angel, we love you.  I mean, we REALLY love you.  More than I ever imagined one could possibly love another. 

No matter the challenges we face together, I want you to know we are so thankful that you came to us.  That you entrusted us to be your parents.  

So on this day we celebrate your 8th year in this amazing life. 

Happy Birthday, our angel, Gabriel!

Thursday, 10 May 2018



Tonight I sit, writing this, exhausted and defeated, after a really hard day.

Tonight I wave you closer, to show you another little glimpse into our world.

Tonight I tell you about how hard autism can be - for everybody.

Tonight I wonder why my child has to smash his head into the wall so many times; hit his head with his hands (a new tic), lash out, thrash his poor body around, as if trying to escape himself?

Tonight I hope this is all because of a new anti-anxiety medication we started him on recently and now stopping?

Tonight I wonder why he has to suffer so?  Why he hates it when anyone in our house speaks?  Why, when he hears a sound out of the ordinary, he pauses, holds his breath and starts to make sounds with his throat to try and override the invading torment?

Tonight I wonder - why him?

Tonight I wonder why God doesn't answer my prayers to release that anxiety monster that has him firmly by the throat?

Tonight I wonder if there is a God.

Tonight I wonder why everything we have tried and are trying, doesn't seem to help him?

Tonight I ask what I can do to help him now?

Tonight I wonder why our love isn't enough to shield his heart and soul?

Tonight my heart bursts with the immense amount of love that I have for our angel.  

Tonight I remember to never, ever give up.  To hold onto hope - always.

Tonight I hope for a better tomorrow - for our very precious son.

Thursday, 15 March 2018

A Boy And His Dog

On the 24th April 2017, we received a wonderful new addition to our family, compliments of the SA Guide Dogs Association.

Let me introduce you all to Zeke:

A yellow, male labrador, 18 months old at the time, that walked in through our front door and straight into our hearts.

I'm sure many of you have seen a story or two about how a non-verbal autistic child was given a dog and it dramatically changed their lives.  Their child suddenly started talking, hugging their dog, never leaving their side.

The problem with these stories, as wonderful as they are, is that it doesn't happen often.  The reality of it is, like any relationship, it takes time to bond and form trust.  

When Zeke arrived, Gabriel was very excited.  He flapped his arms so much (stimming) I thought he was going to levitate!  He shrieked and smiled so we knew he was excited.  Now, bear in mind, Gabriel is VERY tactile resistant.  There are alot of textures he cringes at touching, feeling or even eating.  Water is the biggest foe.  If he messes even a drop of water on his clothing, it has to come off immediately.  When it is time to wash hands, Gabriel hovers his hands in the basin, anywhere but by the water.  Although, he does love his baths and adores swimming.  

And so, Gabriel discovered Zeke's wet nose.  Oh, and his big licks.  On the face, on the legs, arms, anywhere Zeke can lick, he will.  In the beginning, when Zeke would touch his wet, goofy nose on Gabriel's leg, he would bolt forward, like he had just been shocked!  Now, thankfully, he just moves slightly and mumbles at Zeke.  

But we have seen a difference.  Gabriel loves touching Zeke's fur.  He will often walk past him, stroking his back, and sliding his tail, ever so gently, through his hands.  And Zeke is AMAZING with Gabriel.  He is exceptionally patient with him and has the most gentle soul I have ever encountered.  Sometimes when Zeke runs around the garden like he has just been inflicted with Mad Cow's Disease, Gabriel giggles like a teenage girl meeting Justin Bieber for the first time.

Zeke, like most labs, loves to chew.  May I present Exhibit A:

And his tail is like a propeller on speed.  There is an adorable sticker that sums it up perfectly:

Gabriel shows us, in very unique ways, that he adores Zeke.  One morning, Zeke was blocking our bedroom doorway, and G-Dad was running late for work.  He raised his voice to Zeke and the next minute, Gabriel ran out of his bedroom and promptly smacked G-Dad.  

We have no doubt that Zeke is making a huge difference in Gabriel's life, but most of all, he is a companion for our son.  Plus, we all love him to death.

And we can never, ever imagine our lives without him!

Tuesday, 16 January 2018

Starting The New Year With A Bang

Life has been a little hectic and eventful lately, hence my lack of blogging.

So I thought I would finally discipline myself enough to update you all on how Gabriel is doing.

Firstly, Gabriel received a new friend earlier last year -an amazing and adorable yellow labrador, called Zeke, from the SA Guide Dogs Association.  I will write more about him in my next blog posting.

Gabriel is doing remarkably well, developmentally.  He has had a very keen interest in aircrafts for a while now, and loves learning the names of all the various military planes and civilian planes (thanks Youtube!).  We use this to our advantage - we are using his interest to teach him language and communication, via typing on a device or keyboard.  He loves this and beams with pride once he has completed a word.  He also repeats the various names, verbally, as best he can and does remarkably well!

With growth and knowledge comes another, harder, less spoken about side of classic autism.  Intense frustration and Gabriel's injurious behaviour has increased too.  And he always takes it out on his own head.  Gabriel will alternate between hitting his head hard with his palms or smashing the back of his head against a wall.  We have to restrain him, by pulling him away from the wall (who knew a 7 year old could be so unbelievably strong!) or letting him ride out his meltdown on our bed; a big, safe space.

Two weeks ago, we received a frantic phone call at work.  All that could be made out was, "Gabriel ran into the wall with his head".  He was screaming in the background and we rushed home immediately.  When I got out the car, and I approached the front door, I was greeted with this sight :

That is our front door.  Gabriel had had a meltdown, ran towards it and, in the blink of an eye, smashed the back of his head so hard through the blinds, that the glass shattered.  We ran inside to find our son, calmly playing on his ipad.  Upon inspecting him, he only had a tiny, superficial cut on his head and some scratches on his neck - of which the skin was unbroken!  His guardian angels were definately working hard by his side!  The one advantage is that Gabriel got such a fright, he hasn't attempted this anywhere where there is glass, again!

We have invested in a padded helmet, to try and protect his head during a meltdown - this is only worn when he starts to bang his head:

We are terrified he is going to develop epilepsy as a result of this, so we are trying everything to prevent this from happening.  Communication is key but this takes time and many 7 year olds battle to self-regulate their emotions when upset.  

Sometimes we do feel like we are swimming upstream, battling some invisible force, trying not to be overcome with fear of what the future holds.  But no matter how we might feel, we always try to imagine how Gabriel feels - how hard this world can be for him and how immensely frustrating it must be to battle to speak, to be understood, to have a body that doesn't do what you always want it to.

But most of all - we believe in Gabriel 100%, no matter what happens.  We love him unconditionally, deeply and madly!  And we will never, ever, give up on him.