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.

Monday, 21 November 2016

A Letter to Gabriel

My most beloved, Gabriel

Today I feel moved to write to you, so this blog posting is especially for you.

You are the bravest, most wonderful, brilliant human being I have ever been blessed to meet.

You have taught me more about myself, about life, than in all my 34 years before you arrived.

This world is very loud and scary at times, yet your hunger to experience life transforms you into a warrior, a champion.  This makes your Daddy and I more proud than we can ever find the words to express.  Because we know how hard that must be for you.

I cannot even begin to imagine how you experience and feel about the world but I hope you will be able to tell us one day.  Or write or type it.  I so badly want to know how you feel about things, how you see things, how you experience things.  I want to know what it is you want.  For breakfast, to play with, for your life.

I know, though, there are times you are immensely frustrated because we don't always understand.  That you try so hard to make your mouth, your body, do what you want it to, only to have it perform differently.  When this happens, please, please, don't loose hope. Keep trying.  And be very patient. The greatest self-achievements come from the hardest work.

I know you must feel very lonely, at times.  

I know you must feel very sad, at times.

I know you must feel very angry, at times, too.

The world isn't fair, my angel.  We cannot always control what happens to us or how people treat us.  But what we can try to control, is how we react to this.  We can choose to react with love. Easier said than done, I know (trust me on this), but try anyway.

Try to be kind.

Try to be tolerant.

Try to be compassionate, even when there are those around you who aren't.

And never forget;  there are alot of people who are wonderful and filled with love.  And that the world is full of unique, different people.  Because being different is what makes life so special.  It is how we learn from one another.  Different is beautiful.  Always remember that. Some people will laugh at your differences - be different anyway.   

I need you to know that you are a beacon of light.  You radiate love.  You are love. And you are loved.  Oh, are you loved! 

More than the sun, the moon and all the stars in the sky.  



No matter what.

With all my love, always

Tuesday, 4 October 2016

The Wonderful Mind of Gabriel

I can clearly recall the day we received Gabriel's, official, diagnosis 3 years ago.

G-Dad and I came out of the doctor's office, gun's blazing, ready to face the world and conquer whatever lay in our son's way.

We hired psychologists, therapists, all helping to draw up therapy programs to help Gabriel because the pressure for early intervention is ENORMOUS.  We pursued speech and occupational therapy, with gusto. When time passed and not much progress was seen, we changed therapists, had new programs drawn up, all to help our son cope in this world.  We changed schools, we sold our kidneys, and and and.

That thing called time is a real pain in the ass.  She forces reality to poke you in the side, no matter how much you might knock her down with your sword of courage and determination.  You realise after a while, things may not turn out the way you envisioned or had hoped for.  

But then there are these slivers.  These tiny, wonderful, surprising slivers.

Pick and Pay had a promotional event recently whereby you would receive 4 x animal cards per however much you needed to spend.  You could purchase an accompanying album, but Gabriel being the ipad addict that he is, showed an interest in the app for it.  

You would scan the card, the app would pick it up and show you a certain image if it was already scanned or if you were scanning it for the first time.

Gabriel has the most incredible memory I have ever encountered.  He would scan a card, once, and if he received duplicates on another day, would look at them (not even scan them) and simply throw them out the lounge window.  I would then know those ones had already been scanned.

So on one particular day, I saw him continuously scanning the Babushka card, over and over.  When I went to see what was going on, I discovered the card had already been scanned.  After explaining this to Gabriel, he continued to scan it, over and over.  It was only after closely examining the so-called already-scanned card on the app, did I notice what was different :

Once I explained to Gabriel that the spelling on the app was incorrect, was he satisfied to stop scanning the card.

And that just gave me a wonderful insight into my son's mind - so articulate and detail orientated.  It took me a good minute to spot the mistake!  It probably took him 2 seconds.

It was a great reminder to not assume or presume to know what Gabriel does and does not know, or understand.  

To never, ever, give up.

We are now scouting around for a teacher to teach Gabriel to communicate, via typing/pointing.  It will give him a voice and a further peak into his wonderful mind.  

And we cannot wait!