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. 💓

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.

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

 

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.

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.

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!

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.