Since it’s Autism Awareness month I thought I would share a bit about our journey with Autism. Please keep in mind – all stories are different....
4 ½ years ago my beautiful son was born. My second precious baby, first son, he
totally melted my heart! From this
moment on – I knew he was special....
Our first few weeks at home were tough. He would not breast feed from birth, and I
had to make the decision to comp feed, and then totally on the bottle. This coincided with a diagnoses of reflex,
something we had already been exposed to with our elder daughter. Once medicated for reflux, his settling
habits did not improve (but projectile vomiting and screaming in pain did ;)).
Sharing a room with his sister, he kept the whole family awake. Out of desperation
one night, he was moved into another room and as we shut the door he instantly
went silent and slept. From then on in a
totally dark, sound proofed room he would rock himself, sometime for hours, off
to sleep.
Jumping forward 6 months, introducing solids...never happened!!! EVERYTHING we tried was blown back at us in
bubbles!!! He simply did not want
food. We tried everything!! This would then bring tantrums like you would
not believe! He would literally THROW himself to the ground, never a care with
what surface he was crashing into! Or head butt – anything in his way.... At 14
months, just walking, not talking - even a word, and still not eating much we
went for our health check up and was referred to a speech therapist. After a
few sessions we gave up. The advice we were given brought more tantrums.
The next couple of years were a blurr of tantrums, general
misbehaviour, wondering away at all hours, day and night. He played rough – with all of us, with no
understanding of the pain he caused, when he himself did not seem to feel pain.
His eating - preference to paper and dirt rather than food. His speech did not develop
as we expected (“he is a boy – they are slower to develop” - we were told
numerous times). Sleeping became an issue.
He slept for no longer than 2 hours a stretch, then would play for
hours. He would wake and help himself to anything to play with. His favourite was coffee and dish wash liquid
– rivers and hills on his carpeted bedroom floor. One day it was eggs (all 24 I just bought to
bake) and 9 pkts of Jelly crystals.... “cake” he told me when I discovered it
the next morning!! His passion for cars
became extreme. We could not go shopping
with purchasing a new one – or the kicking screaming tantrum would erupt. “You
are spoiling him/he needs more discipline” from helpful friends and family....
And if we could not find that exact car at bed time – no chance of
sleep!!! Potty training – won’t even go
there!!! Could not put underwear on him
without yet another tantrum. Let him run naked and yet again – tantrum til the
nappy was on. Bathing and teeth
brushing.... oh I could go on and on and on.
In this living hell, we also had a very funny, clever little
guy with the most beautiful smile, if things were going his way ;). He pulls
the funniest faces and does the craziest dance moves you have ever seen. Show him how to do something once – and he
can copy. Puzzles and patterns were no
challenge for him.
A year ago our gorgeous baby girl arrived, and fearing for
her safety we knew we had to get some help with the then 3 ½ year old terror we
had in our home. We seeked help from our
health nurse on the first ‘baby’ home visit.
Thankfully, she was prepared.
Tracey had seen Connor on numerous visits and had already mentioned, but
I rejected, the possibility of Autism.
Within weeks we had seen an occupational therapist, new speech
therapist, dietician, our GP and then paediatrician and came out with a
diagnosis of ASD – Autism, PICA, ADHA with echolalia. You’re welcome to google it all – I had to!!!
Lol
Now comes the interesting stuff...... with all this treatment
my handsome little man has not thrown a head splitting tantrum in almost 3
months! If you meet him, the chances are
you will get a smile, but not much eye contact!! And he is talking!!! Improving every day!! His eating is still
limited but he is day toilet trained – still has his nappy for bed. He still has passion for certain things –
cars, “bumble cars” (transformers), cars, dirt.
He MUST have a fan on at all times in his room where he can reach it. He
won’t shower but will bathe in a tub (we don’t yet have a bath). His compassion
for others is amazing: apologising before being asked if he hurts you. Tonight, fearing for his baby sisters “hurt”
he ran to tell me “Fan off baby - Fan up baby”. Knowing he was talking about
his fan – I raced into his room where he had already turned it off so “baby”
did not get hurt J.
He just wanted me to lift it higher so he could turn it back on!!!
He now attends Kindy (something we thought 12 months ago
would have been impossible – “expelled in the first week” we joked!!) and the
ACES unit. He is making friends!!!
Without hurting them!! He can share!!!
It’s all truly amazing when we see how “improved” his behaviour is!!
Now why am I sharing this story?? This month is Autism
Awareness Month. While my son’s life,
and ours, has got a little easier, he is not “fixed” or “cured”. Autism is with us for the rest of our lives.
We have so many more puzzle pieces to put together to understand how he experiences
this wonderful world.
It is through strategies and assistance we have got to the
point that I do not fear taking him in public and the ensuing tantrum with
judgemental stares or “advice” given for fixing his “bad behaviour”. I am proud
of his achievements BUT it is only because WE are AWARE of his world that he
has come this far.
Do you know of a child who is so frustrated or unaware of
the world around them? Strange behaviours? Repetitive “naughtiness”? A family
who struggle with anything I may have mentioned? Awareness is not just about
understanding my son or our struggles – it’s about assisting a family who
simply, like us, did not know this was caused from a health issue!
I am out and about tomorrow (April 16th) in the
main street of Chinchilla for “Go Blue Day” – and would love to tell you more
about how we are handling..., what we are doing about etc etc.
This is just our story.... please feel free to share...and
thank you for taking the time to read xxxooo
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