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.  

Always.

Forever.

No matter what.

With all my love, always
Mommy
xxx


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!

Wednesday, 13 July 2016

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.

  



Saturday, 2 April 2016

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.