Friday, 16 June 2023

To Our World

13.

I swear, it feels as if I just looked away for a second.  And here we are.

13 years old.

From a baby to a teenager;  how you have grown.

Your journey through this life has not been an easy one for you.  Your path, littered with stones.  

I hope you know that when you fumble and fall over them, we will always be there to wrap our love around you.  To encourage you to get up, to try again, to never give up.  To believe in yourself.

I don't know how you see the world.  I can imagine.  I have flashes of it when I try to enter yours, but I do not, truly, know.

What I do know is that, you changed our world.   Your life has shown us what matters most.  What to fight for.  What to reach for.  What to breathe for.

And we try to do this by following your compass.  Not ours.  We tried in the beginning to have you follow ours, and for that, we are truly sorry.  

There is a Christmas school play from your very first preschool that I have only ever watched once.  I can never watch it again, because it is too painful to witness how overwhelmed you were, rocking yourself in order to try and tolerate our world.  We didn't have the knowledge back then about your world, but we do now.  And that is why we, constantly, try to do better.

13 years old today.

You have come so far in those 13 years. 

From not saying a word, to constantly learning, reading and practicing what you hear in YouTube videos.  Over and over until you have the pronunciation perfected.  And then using those phrases, in the correct context, in response to us. And we love it.  The sheer innovation of it! 

To not leaving the house without headphones, to now going for walks, without them, of your own volition.  

To being so traumatised by loud sound, to now, almost relishing in it. 

It is truly beautiful to witness your confidence growing and how your personality has developed. 

You should be so incredibly proud of yourself!  For never giving up.  For how far you have come.  For how much, no matter how big or small, you have accomplished.

Happy Birthday, our world!

We love you to infinity and beyond.  Always and forever. 💓




Saturday, 9 October 2021

To Breathe Again

It's been over 2 years since I have, personally, posted.

Why?

Well, I have been holding my breath.  

Things have been going well for Gabriel and I, strangely enough, didn't want to jinx it by writing too soon about it.  

But then something happens that jars you out of that bubble to remind you that autism can outlast your breath-holding.  It comes along like a vice that paints itself around your neck and squeezes really hard, reminding you of its reality.

Load shedding (should actually be called rolling blackouts, but hey, that's a whole other post) hit our home this afternoon.  Gabriel hates load shedding - more than I do.  We have two inverters in our house to try and keep Gabriel's environment as constant as possible.  They just don't cover the big, overhead lights.  It doesn't matter whether it happens during the day and that we don't need the lights, or if we prepare him or not, we never know how he will react.  

When that inverter fan kicks in, sheer panic unravels on his face.  Anxiety takes over, because there is a change in his environment and he cannot predict what will happen.  Reassurance does not work.  Showing him that the power will be back on at X time, merely ignites a verbal loop of repeating this time.  

And then the head banging begins.  Against the wall.  Fucking hard.

So what did you spend the last 2 hours doing during load shedding?  Reading? Board games?  Maybe you took a nap?

We spent it trying to protect Gabriel from himself.

After the first hour, I was, honestly, expecting the doorbell to ring and for me to see two, sturdy, policeman at the door.  He screams and yells so loudly, it must sound, to the outside world, that he is being slaughtered.

It is terrifying.  It is heartbreaking.  It makes my soul bleed.

After 11 years I can still say that.

I can only imagine what it is like for Gabriel.

I don't write this for sympathy.  I don't write this to embarrass our angel.

I write this because so many families who have angels with classic autism, don't write about this.  For fear of being judged, for fear of being stigmatised.

Gabriel is doing so well in so many areas.  He is excelling at speech, using the scripting method (repeating dialogue from videos) and then uses them in the correct context of the situation.  He has an incredible photographic memory and an, almost, supernatural eye for detail.  He does well with addition and subtraction, but battles to do both in one lesson.  It has to be one or the other, as the transition is too hard. He is showing independence and confidence which makes my heart burst with pride and happiness.  He is so brave and he tries so, incredibly, hard.

But I worry.

I worry about his future.  I worry about what will happen to him when GDad and I are gone one day.

I just want to be able to breathe again.

I want Gabriel to be able to breathe.

But, until then, we will never, ever, give up.





Monday, 11 January 2021

Reframing Severe Autism

Well hey, everyone!

So I know it's been a minute (ok, several) since I last blogged.  Life has been busy, but, to be honest, I just haven't felt inspired to blog until now.

I promise to do another post in the upcoming weeks detailing Gabriel's progress, but today I wanted to share an exceptional video posted by a 'non-verbal' autistic teen, who reminds me so much of Gabriel.  He communicates via a device and shares a wonderful insight into the mind of so many we misjudge from what we see on the outside.

Please watch and share the following short clip:


https://youtu.be/CtK9paFGUjc


 

Tuesday, 2 April 2019

Today Is An Important Day


It's that time of year again.  That time where we have a special day allocated to talk about autism.

Gabriel will be 9 years old in June and every year, we continue to learn.  Learn about our son, about society, about kindness, about judge-mentality, about autism.

I could quote statistics, like how the CDC in America announced last year that the autism rate in the USA is now 1 in 59.  Why does this number keep getting closer and closer each year?  Some in the medical community believe it is because diagnostic tools and training have improved, so diagnosing an autistic child is easier to do.  Others believe it is because autism is becoming more prevalent.

So, after many years of researching, reading studies, watching web seminars with certain institutes that I am registered with, I have a theory as to what causes most cases of autism.  

We live in a very toxic, modern, world now.  Inevitably, this is going to take a toll on our genetic material.  We procreate and this damaged material is passed down, generation, after generation.  Each generation being exposed to this toxic environment, as well.  This is going to result in genetic mutations and inflammation occurring.  These could cause DNA deletions, duplications, and/or molecular changes.  The severity and degree to which these mutations occur, determine the severity of autism, because this determines molecular and chemical functioning - basically, how our cells and neural pathways work with each other.  

Insert Disclaimer : Now, I am no qualified scientist, this is just my personal, formulated theory.  

So what do we do?

We need to simplify life.  Dramatically reduce the toxins in this world.  

Unfortunately, I don't see this happening for a very long time.  

An alternative is genetic engineering to repair/replace damaged DNA.  We are, however, a long way away from this too.  

So for now, we try different methods to help our children cope in this world.  Whether that means dietary changes, medicinal implementations, behavioural support, to name a few. 

And we wait.

And we try and not feed our self-anointed guilt.

And we hope.  

And we love our children, appreciate them and value them.

And we enter their world to connect, to try and see the world through their eyes.

Because our angels deserve to be in this world just as much as anyone else.  

So on this day, and every other day, I ask that you please spread awareness, acceptance, compassion and love about a little something called autism.



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: 

LOVE

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

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 ðŸ˜Š

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.  

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!