JUST A PHASE

Ahoy there readers far and wide. Today’s blog discusses the many obsessions and phases those with autism spectrum disorder experience throughout their life. Previously, I spoke about my brother Matt who becomes highly stressed and aggressive when he doesn’t have access to the internet or television.

Each family’s story is different and to show how important it is to keep things in routine at all times I spoke to Bronwyn Schmidt. She and her family care for 15 year old Mitchell and she told me about what keeps him calm;

STRAWS! Mitchell has an obsession with Hungry Jacks’ straws. Yes, they have to be Hungry Jacks. He has been like this since he could hold something. He bends the end of the straw and then shakes the straw in front of his face. It is like a sensory issue, it calms him. The only way I can explain it is like when we want to drink or smoke to be calm, or when you’re dying for a cup of coffee. If I remove the straws he becomes very aggressive and stressed. We have to hide the straws and he has to ask for them. When he does, we send him up stairs and get him a new straw when he asks for one. If we let him see where we hide them he would finish the entire stash in record time ie. A hour and then we have to go steal more from Hungry Jacks!

Providing Mitchell with straws starts from the moment he wakes up. She has his new straw ready for him at breakfast and when he gets home from school. “He stays a happy boy as long as he has a new straw every hour.”

There are many other routines which Bronwyn and her family must adhere to each and every day. It becomes such a big part of every carer’s life, but no one outside of the family even knows about it and that’s what strikes me the most.  For families, the home becomes a sanctuary. The life many have become accustomed to; providing the never-ending supply of Hungry Jack straws or the constant access of the internet are all daily wars, battled by each and every family, on their own.

The search for respite and Government support is another war in itself Bronwyn shared;

“The Government don’t help you get into these [respite] programs, they don’t even tell you about them. Everyone has to seek and find these programs through schools and friends and apply for them and only hope you get off the waiting list before they are too old for the program they have applied for.”

Bronwyn and her family were on the waiting list for 12 years before they started receiving respite support.

Sadly, Bronwyn is not alone. If you have any questions or would like to get in contact with Bronwyn or anyone else here on Oz Carers network, forward your questions onto me.

I remain

Sam 

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IN LIGHT OF IT ALL PT.2


“If you put an indoor plant out in the sun, what happens to it? It shrivels and it eventually dies. That’s what will happen to Sammy Joe if he keeps being exposed to light.”

 Yesterday, Maria walked you through the jobs she performs as a carer on a daily basis. Today’s blog discusses Sammy Joe’s birth and the long, arduous diagnosis process faced by the Liistro family.

Read the rest of this entry »

This next story will span over two posts. Last week I spoke to Maria Liistro, she along with her husband Joe and 18 year old son, Christian care for Sammy Joe who has Trichothiodystorophy (TTD) and autism spectrum disorder. TTD is a rare life threatening degenerative illness in which suffers are allergic to UV sunlight.  

Not only is she a full-time carer and mother, but CEO and founder of the Friends of Sammy Joe Foundation.
Writing the Liistro family’s story myself would not do it justice, so for the next two posts, Maria will let you see life through her eyes, walk in her shoes and take you on a truly moving journey. Today’s blog goes into detail of a day in the life of Maria Liistro. Read the rest of this entry »

SAM’S STORY 101

Hi everyone, my name is Samantha Caldone and I am a carer.

Group Response     Hi Sam!

Having to write this does have an Alcoholics Anonymous feel to it. Admittedly, this was meant to be the first blog but I found it quite difficult to get the ball rolling.

So here we go.  Read the rest of this entry »

WHO CARES FOR THE CARERS?

Copyright © Dave Tacon

First cab off the ranks is an old friend from primary school, Michael Casha. At only 19 years of age, this impressive young man has been lobbying for greater recognition and financial assistance from the State Government to young carers, while pursuing his own dream of one day being an IT analyst.

His story is nothing short of inspirational.   Read the rest of this entry »