Thursday, 10 May 2018

Tonight

Tonight.

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.


Wednesday, 2 August 2017

My Child Has Been Diagnosed As Autistic - Now What?

Well hi there 😊

Thanks for stopping by.  So, your child or someone you know has been diagnosed as Autistic and you don't know where to turn or what to do?  

Do you feel lost, sad, depressed, maybe overwhelmed?

Let me say this first : believe it or not, everything is going to be ok.

Now, breathe.  Nice and deeply.  Let that stress of the unknown float away and carry on reading.

I want you to know that you have done nothing wrong.  There is nothing wrong with your child.  I know you might not believe that now, but trust me, s/he is unique.

Now, the next extremely important point I am going to make is this : your perspective is going to make all the difference.

Yes, it is sad when you first receive that daunting diagnosis.  You will grieve. That's what you need to do.  You expected life to be one way and now it will be quite a bit different.  But it's not the end of the world.  Yes, there will be challenges.  Yes, you will cry.  Yes, you will feel hopeless at times.  

But know this.  What you have been given is a beautiful gift.  A beautiful gift in the form of a child who is going to teach you what love really means.  You will discover how strong you really are.  You will become strong.  You will learn to see the world in an entirely different way.  You will celebrate the smallest accomplishments like you cannot believe!  You will all survive this.

So where to from here?

From our experience with Gabriel, the very first thing you need to do is create a safe, structured, loving environment for your child.  Autistic children usually have very high levels of anxiety because the world can be a very loud, bright, confusing place.  

You will need alot of patience, as traditional forms of discipline might not always work.  Especially when your child has meltdowns or if they self-harm.

How you react to your child's behaviour will play a massive role in how quickly they calm down.  I have always found that when Gabriel has a meltdown or if he lashes out at me, I force myself to remain calm inside.  I reassure him with hugs that everything is ok, that I am here for him.

Meltdowns are a necessary part of life for Autistic children.  It is how they release stress chemicals that have built up over time.  Let them have the meltdown.  From what some Autistic adults have told me is that a meltdown is far scarier for the Autistic child then for those witnessing it.  They are distressing to see, at first.  You will get used to them. But you will notice your child will be calmer after.  And they will improve as your child grows and feels safe with you. 
  
Visual cards are also extremely helpful for Gabriel.  He has a visual board at home where I put up cards for his daily routine, so that he knows what to expect.  For e.g. - a photo of his breakfast to show him that he will be having breakfast first. Another card for getting dressed, for brushing teeth.  It really makes a big difference to Gabriel's anxiety levels.

Help your child become confident by allowing him or her to partake in household activities.  Don't always do things for him or her.  Break the task down into steps (to wash hands : first turn on tap, wet hands, apply soap etc) It will allow them to become confident in themselves.  And praise them for it.  

Listen to your gut.  Yes, doctors know alot but you will know more about your autistic child.  Trust me on this.

Remember too that no two Autistic children are the same.  They might share common core similarities (such as having meltdowns and stimming) but other than that, are completely unique.

Beware of charletons - there are folks who jump on the bandwagon promising the best therapies in the world, many of which are extremely harmful (biochemical treatments). And they will place you in massive debt if you are not careful. Remember, you know your child and what makes him or her happy. If your child is happy it means their anxiety levels are low.  If they are low they will learn.

Always presume competence.  Your child might take a while longer to perform a task you have requested.  Be patient.  They are usually processing your request. Just because they do not react the way you expect, does not mean they do not understand.  For e.g. I know of an Autistic child who, when asked to put his shoes on, did not respond.  It was finally realised that he had to see where his shoes were first, in order to complete the request.

Reach out to an organisation near you.  There are many Autistic NPO's per city, that offer counselling, workshops, advice etc.

And lastly, never ever give up.  You don't know what the future holds.  With love, patience, perseverance and hope, your child will surprise you in ways you couldn't have ever imagined.



Sunday, 2 April 2017

Today Is A Very Important Day

The 2nd April is World Autism Awareness Day.

I have posted on this day for the last two years and this year is no exception.

Because there can never be enough awareness.  Many people in the autistic community prefer to call it World Autism Acceptance Day but I, personally, think we are still a long way away from discarding the Awareness word.  

I recently stumbled upon the following, very short, video that really explains it beautifully.  

Please take 5 minutes out of your day to watch this and share it so that more people can be educated about this neurological difference.  Because when there is awareness, amazing things can happen.


Friday, 10 March 2017

A Miracle Called Gabriel

Gabriel's story began on the 14th August 2009.

Why this date and not his birthday?

Well, that was the day I nearly died.

I had developed double pneumonia, without realising it, after injuring my left foot and being, basically, bed ridden.  I had put the back pain down to muscular exertion due to the crutches I was using.  But the back pain got worse and one morning, I collapsed in the lounge, barely able to move.  My phone was in the main bedroom and I had to crawl up the passage to get to it.  That crawl was the hardest thing I have ever had to do.  My beloved Mom had sensed something was wrong and had, repeatedly, tried to phone me.  I managed to message her back to get help and she, immediately, phoned G-Dad who contacted an ambulance on his race home.

I lay on the bed, barely breathing, unable to move (this is because the blood in the extremities travels to the brain, to protect it).  I knew I was dying.  I called out to God to help me.  And then something incredible happened.

Something 'crashed' through the roof into my room.  Something massive and angelic-like.  I say 'crashed' because the force at which it appeared felt like an elevator free falling and crashing on the ground floor.  This being sat next to me, took my hand and vanished.  Fast forward 1 hour and 20 minutes and lying in the emergency room on oxygen, the Physician couldn't believe I was still alive after looking at the CT scan of my lungs.  He told G-Dad he was giving me a 50/50 chance of making it through the night - it depended on him choosing the correct antibiotic to help me and how I responded to it.  I spent three days in ICU and 4 days in a general ward.

On the third day I was in hospital, my Mom's beloved cat was rushed to the vet, very ill.  His condition?  He had water on his lungs!  Just like that - out of the blue. On the morning I was discharged from hospital, he passed away. Coincidence?

About a week later, I fell into a deep sleep and had a very vivid dream.  I was lying in a hospital room, G-Dad was sitting on my left and my Mom, on my right.  A nurse came into the room, holding a baby and told me it was time for her first breast feeding.  I woke up with this overwhelming longing to have a baby.  It was this indescribable thirst and nothing was quenching it. 

I have suffered from a condition called PCOS since I hit puberty and was told the year prior to my near deathish experience, after a full examination and tests, that I could never have kids.  So this dream did nothing to help calm this statement which was etched into the back of my mind.

A few weeks after my release from hospital, G-Dad was looking at me and suggested I get a pregnancy test.  I laughed at him, telling him it would be a waste.  But he was adamant.  He said he just had this very strong feeling that I was pregnant.  So, I indulged him.  I looked at the double lines on that long, white piece of plastic, amazed.  I told him it had to be a mistake and that he needed to go out and buy three other tests by different manufacturers.  They all came back positive.

And so, a miracle was born 9 months later.

A beautiful, precious, incredible miracle.  

G-Dad and I agreed that I would get dibs to his first name.  I had always loved the name Gabriel and after my I-was-almost-dead experience and encounter with, what I truly believe was an angelic being that saved my life, I decided what greater way to thank the universe for my miracle than to name him after an angel.

Not only were we entrusted with this precious life, but we were entrusted with a very special, different, precious life.  

A miracle who teaches so many of us so much about ourselves and about life every single day. 

But most of all, a miracle who teaches us what love truly is.

He is our miracle, Gabriel.



Tuesday, 24 January 2017

When Is Enough, Enough?

I often wonder what it must be like to see the world through Gabriel's eyes.

Does he see the world in a sense of order or is it chaos?  How loud is everything to him?  How does he translate my words when I speak?  Does he know how much we love him?

Our world is full of hope yet tugged at all sides by doubt.

Doubt - how will I ever get him to eat something other than the 5 things he will only eat?

Doubt - how will I find a way to help him manage his auditory sensitivity?

Doubt - how can we teach him to stop hitting and headbanging?

Doubt - how can we understand what it is causing him to hit and headbang?

Doubt - will he have friends he can play with one day?

Doubt - are we ever going to get our guide dog we have been on the waiting list for forever 
             for ? (ok, not quite forever, more like 20 months, but it feels like forever).

Doubt - will we ever find a Carer who actually cares about Gabriel?

Doubt - are we teaching him correctly?

Doubt - are we doing enough?

Enough.  When is it enough?  

Sometimes I feel like I am swimming in an abyss, trying to find the North Star to guide me back home.    

Does every parent battle with this?  Battle with the constant nagging of our internal dialogue; are we doing the right thing for our kids?  Are we feeding them enough emotionally, intellectually, physically to help them grow into a happy, self-sufficient adult?

I often wonder what neurotypical parents have doubts about.  The same issues?  I would love to hear what they are.  Seriously.

A few weeks ago I had a very vivid dream of Gabriel.  He was about 14 years old yet had the wisdom of an old soul.  We were standing in an empty room, with no windows or doors.  There was a soft lavender light filling the room.  

I asked him, filled with anxiety, "what can I do to help you?"

He looked at me, extremely relaxed and calm and replied, "nothing."

I repeated, "nothing?"

"Yes," he said, "I was born this way".

It's the first time I have dreamed of Gabriel talking.  It was a profound dream and I woke up with a sense of clarity and calmness.

I guess we are all doing the best we can in this life.  

And as long as we do it with unconditional love, that should be enough.