Monday, August 8, 2016

What's it like to have a sibling with autism? VIDEO + my daughter replies

What's it like to have a sibling with autism?

I watched a video with a similar title today, and, well. I did okay. Head nodding, yup, agreeing, and then: tears. Watch it and see why...

The AOL video is titled: 'These Kids Share What It's Really Like to Have a Sibling With Autism.'

What I loved about it this video was that it was so raw and honest.

You can watch the video in full HERE.

Well... I asked someone who has a sibling with autism... my daughter's twin brother. My son, Rafael. My daughter, Estella.

Here is what Estella said:

"It's like, hard, because he's different, and he does different things.

He, like, doesn't have the same emotions as us.

He has different choices, at a different level in life.

He's a reality person, too. So, he see things in a different way.

But there is also the screaming and drama.

The tantrums - they are noisy, and ten times as crazy as normal people.

I feel sad how he has to put up with things that are hard.

Sometimes he gets all the special treatment at school - like cooking, and excursions.

Sometimes he gets all the treatment like that at home, too.

We always have to agree with him, to make sure he doesn't have a tantrum

[Do you worry for him in future?]

Yes, because when he is in the real world with lots of hard things that are challenging, maybe his tantrums will get worse when he gets older

Because the older you get, the more you get serious, all the time.

He will meet new people, and they may not know he has autism.

[Do you feel that you care for him more because he has autism?]

Yes. I want to teach him all there is to learn. I want to teach him about trying more things, to act like a normal person.

I think Raf is kinda different and kinda normal at the same time."

So there you have it. Parents of kids with autism - you will be able to relate.

From the video, some quotes:

“Not having a typical sibling relationship.”

“The struggle of going through his adulthood is something that’s not only going to impact myself but my future wife and my kids.”

“Not getting enough attention from your parents.”

I carry a lot of guilt just trying to live my own life.

“The frustration is just something you have to swallow.”

But ultimately, they all agree that they have learned a lot from their autistic sibling:

“My brother has taught me to accept people for who they are.”

“To have a deeper purpose in life.”

“That differences are ok.”

“A person’s a person no matter what.”

Friday, October 23, 2015

Sesame Street: Julia, Character With Autism

The new Sesame Street character Julia... who has autism.


Monday, August 24, 2015

John Doyle: 'A Current Affair' Autism Story - VIDEO

Aussie comedy legend John Doyle, one half of duo 'Roy and HG', opened up tonight on 'A Current Affair' about his sister's incredibly difficult struggle with autism in a bid to help other Australian families.

The story also included fantastic profiles on other families with beautiful kids living with autism. I was particularly keen on seeing older kids and teens and young adults and how they do.

Ask any parent of a child with autism, and they will tell you this is the one thing they think about/worry about the most: how they will fare as young adults, how the world 'out there' will treat them.

John's comments at the end of the interview certainly made me cry openly, in front of my children.

My daughter gets it, had told me the report was going to be on, even encouraged me and was excited for me to watch it, knowing I'd get lots from it.

She is seven - can you believe such empathy from someone so young?

Her twin brother's autism has taught her a level of compassion I could only hope for.

And the clincher? At the end, when I explain to her that John's comments about his severely autistic sister has taught him so much in life, and what that all means, and that she herself is so empathic and wonderfully caring to her brother, she declares: "Mum, when I grow up, I want to help people with autism."

After crying all over again, I ask her why.

"Because I just want to help them, Mum."

Photo: Tracy Grimshaw and John Doyle. Source: Facebook

Friday, June 19, 2015

Tim Sharp and Judy Sharp Interview: 'A Double Shot Of Happiness'

'Our Autism Adventures' posted a blog on the brand new Australian book 'A Double Shot Of Happiness' (read more here), and now, we are happy to share our interview with the beautiful mother and son duo, Judy and Tim Sharp.

Here they are:

Here is what they said about their journey with autism, their experiences, and their wonderful book (which, by the way, you must buy):

Interview with Judy Sharp:

1. Tell me what compelled you to write this book?

Tim is a true hero and his  story  should be shared. I hope this book might encourage other people  facing challenges, as we have had a few over the years and  also give families living with autism some hope.  What Tim  has achieved at only 27 years of age is nothing short of  magnificent  including being the first person in the world with autism to have his art turned into an animated TV series that screened on ABC TV, showing his art in some of the worlds great locations and giving a TEDx talk at the Sydney Opera House.  Achieving all this from a diagnosis of autism that included a  prognosis that "I should just put him away and forget about him,"is extraordinary. As well Tim is an exceptional young man who touches the heart of everyone he meets,  I wanted  to  share the absolute joy of Tim and his glorious art.

2. How do you explain autism to someone who knows nothing about it?

Autism is a developmental condition that principally  affects communication and the ability to socialise. For me that is the cruellest part of autism as I see connection with other people  as the very essence of life.  To think my son would not have the happiness of that connection  was  devastating. Autism  can also have challenging, restricting or repetivie behaviours. Sometimes there are obsessive behaviours or limited interests. It affects every part of life, eating, sleeping, the sensory system the ability to deal with the unknown or unexpected.  Up to 25% of people with autism remain non verbal throughout their lives.  It is a lifelong condition without a cure and although it has genetic predispostions its cause is not known.  For us, autism has taken us on a path that I knew nothing of and presented challenges that I had no idea how to deal with, but it has given us a life  with more beautiful difference and meaning than I could have ever imagined.  It has made us very closely bound together as we have stepped outside what we knew and  learnt so much from Tim about being in the moment and  building a life  that is true to who you are. 

3. There is one line in the book that floored me, about Tim's nutritionist: "I tried to explain to the nutritionist about Tim's autism, but she wasn't interested. She thought autism was an excuse for bad parenting." - How on earth did you deal with the aftershocks of that? I know you said in the book that "She was so judgemental I had to stand up and walk out of her office. I'd had enough" but how did it affect you emotionally?

By the time I saw that nutrionalist, I had heard the  same accusations in various forms for several years.  It never got any easier, constantly being told that I was lazy or a bad mother always broke my heart and made me feel guilty. It also made me feel inferriror and like such a failure. I would usually sob my heart out.     The worst part was, I interpreted what they were saying as  that I didn't love Tim enough when the truth was I felt like I loved him so much I couldn't love him any more.   After her, I decided that I was the only expert in the world on Tim, no one loved him like I did. We didn't need anyone hurting us ever again.  I would do it all by myself , we would build our own strong family and look for happiness. 

4. I am always curious to know how kids with autism grow into adults with autism, as my son has a mild autism diagnosis. Can you shed some light for parents with young kids with autism, perhaps some key thoughts and words of wisdom?

Autism has it's own time line, it can't be rushed, a lot of things will take what feels like an eternity and that can be frustrating, but like they say, slow and steady. I've seen a lot of people with autism grow into contented young adults living fulfilling lives. I know some young adults who study, work, drive cars, play sports and have a social life within the definitions of their own kind of autism, even with the difficulties of communication. I know others who  keep close to home, and have a limited social life with others, and have routines that are very important to them, but still lead very fullfilling and happy lives. I am most proud of the good and kind gentleman Tim is he has reached a place where he is very comfortable and happy with the life he builds. I think it is important to work with your own kind of autism, the strengths and the passions, it's own needs.  Autism doesn't go away, we need to work with it,not try to make it change people into what we expect. That is the gift of autism, learning another way to live, learning to care more about someone else and their needs. My words of wisdom… Accept the difference and build your own beautiful dream, Tim proves that dreams can come true.

Interview with Tim Sharp:

1. How does it feel to have your book in print and see it as bookstores?

It's fantastic.  I love going to the book shops and seeing it on the shelf.  I talk to the people in the shop and sometimes I sign the book.  I feel like a rock star.

2. Tell me how you feel about your mother, and what she has done for you over the years?

Mum is my best friend. We are happy together. She is the best mum in the world. Could I do this  without her? definitely not. I love my mum. 

3. What is next for you?

The play in New York, I am going there to work on it in December, it's called Laser Beak Man, of course. And I will keep going to book shops.

'A Double Shot Of Happiness' by Judy Sharp will be published on 27 May 2015 (RRP $32.99 ) and will also be available as an e-book.

Monday, June 15, 2015

Dog tries to calm owner's Aspergers meltdown: VIDEO

This just posted, about go viral video is something to watch, to help understand what Aspergers can be like.

Says the description:

This is what having aspergers is like. Please no negative comments this really happened and it's not easy to open myself and share what it's like on a daily basis. This is what's considered a meltdown. Yes Samson is alerting. I trained him to alert to depressive episodes and self harm not both but he alerted. It appears the response is late but it's actually supposed to be as I'm coming out of the meltdown as I tend to have a panic attack after.

Dogs used as a calming therapy for kids with autism has been known to soothe and help a child down.

In fact, if you look closely (make the video bigger on your screen) you can see the dog's collar says: 'Service Dogs.'

Parents of kids with autism know only TOO well what an 'autism tantrum' (as I refer to it, with my husband) looks like.

To onlookers, it looks like one of these things:

- bad parenting
- a spoilt child
- an uncontrollable child
- lax parenting rules in a household
- giving in to a rude child

It is NONE of the above.

We should know - our seven year old son has a mild autism diagnosis, and while he doesn't self-harm, his tantrums can be EPIC. And I do mean, EPIC (caps, bold intended).

If you were an onlooker you would not know where to look, what to do, and you could make one of the judgements, above.

Let the above video be a marker for you - all is not as it seems.

Don't worry - I was a judge-y parent just like you once… until I had a (beautiful, adorable, loving) child with autism.

Sunday, May 24, 2015

'A Double Shot Of Happiness': Book On Adult Autism by Judy Sharp

This book by Judy Sharp - 'A Double Shot Of Happiness' - is a real treat to read, for a gazillion reasons. For me, it resonates because I have a son with a mild autism diagnosis, and I am always curious when I meet the mothers of sons with autism. What will my boy be like? What will his world feel like? Each child - and each diagnosis - is vastly different of course, but I am always thirsty for knowledge on this rare insight.

Says Judy: 

“I live with three superheroes - my sons Tim and Sam and a colourful, funny, masked character called Laser Beak Man…”.

Laser Beak Man

Tim Sharp was just three years old when his mother, Judy, took him to a paediatric specialist and he was diagnosed with autism.  Judy was told the autism was so severe that Tim would never speak, go to school, learn to live in a normal household and would be incapable of love, even towards his own mother.  She was told she’d need to have Tim institutionalised and that she should just “forget about him”.

WOW. This is reminiscent of the scene in the movie 'Temple Grandin' where the lead character (played by Claire Danes) and her diagnosis (back then, autism was referred to as 'infantile schizophrenia' - can you even believe it?) is discussed by a specialist with her mother, and how institutionalisation was the route suggested for the child. If you've seen the movie - and read the myriad books by Temple - you'll know this is not the life path chosen by mother and child.

Likewise for Judy, this was not the path chosen for her son Tim.

Judy resisted expert advice… and, struggling to have Tim communicate with her, Judy one day picked up a pen and started to draw.  It was an action that would change their lives forever.

Now in his twenties, Tim’s leading a fulfilling life as a world-famous artist, creator of the joyful ‘Laser Beak Man’. It’s a true testament to the instincts his mother trusted all those years earlier. BLESS YOU, JUDY!

Tim’s art has been exhibited internationally in some of the world’s greatest galleries, has been the cover of a band’s CD, turned into an animation for TV and is an off-Broadway play in New York. 

'A Double Shot Of Happiness' is Judy’s beautiful and heartfelt account of Tim’s odyssey from that terrible diagnosis to his emergence as an acclaimed artist and a fulfilled, loving and loved young man.  This is a story full of many hurdles, moments of despair and incredible hard work from Tim, Judy and his brother Sam, but ultimately their story is one that’s moving, inspiring and triumphant.

“Most people are charmed by Tim but sometimes they aren't. When we come across these uninterested people I want to rush up and implore them to listen to him. ‘You should listen to his story, you really should. You won't hear another one like it. You will hardly believe it. Sometimes even I can't even believe it!’ I have shared every minute of this unbelievable adventure with Tim and that makes me feel like the luckiest mother in the world.” – Judy Sharp

More about Judy: she raised two boys, Tim and his younger brother Sam, as a single mother. Sam is a former state swimmer and trialled for the Olympics.  He now works as a high-level swimming coach.  Tim’s art is exhibited all around the world.  He spends much of his time helping organisations and schools that work with children with autism. They live in Brisbane.

'A Double Shot Of Happiness' by Judy Sharp will be published on 27 May 2015 (RRP $32.99 ) and will also be avoalble as an e-book.

An interview with Judy and Tim is on its way right here, so stay tuned.

Sunday, April 19, 2015

Facts Are Your Friends -- Vaccinate Your Children, by Kristen Bell

Have you read the piece by Kristen Bell on vaccinations in 'The Huffington Post'? You should.

I have popped it on this blog page - the 'Our Autism Adventures' blog page - without thinking too much about it. I could have put it on my 'TwinnieWorld' blog page, or my 'Josie's Juice' blog page, as the latter is celebrity-driven content.

But when you say autism these days, people can equate it with another emotive word: vaccinations.

And so, here we are.

I read this post a few days and was rather blown away.

I think it's the most thoughtful, non-ranty, educated, well-researched position on vaccinations I have read, and I am kinda in love with Kristen. Even more than before.

Read the start of the piece here, then scroll down for the link to read it all. You won't regret it.

Facts Are Your Friends -- Vaccinate Your Children, by Kristen Bell

I didn't think I was going to vaccinate my children. I've always been earthy, crunchy, whatever. Fair trade? Artisanal? Free range? I love it all. I care about what I put into my body, and when I got pregnant, I became acutely aware that my decisions affected someone else. Someone who I had a duty to protect.

I'm a fairly confident person, but I was filled with so much uncertainty when I became pregnant. I was thrust into a world of choices: home birth? Drug-free? Inducement? Caesarian? Eat my placenta? And when I shared my birth plan with other moms, I would often feel shame, like I wasn't willing to go as far as others. Every conversation felt like a million little tests that questioned my motherhood. The consensus seemed to be that anything short of a drug-free home birth in water was child abuse. It was a lot of pressure, but ultimately I felt like having a human pass between my legs was stressful enough. I didn't need the added trouble of something going wrong and screaming, "Why am I squatting on a silk pashmina surrounded by wind chimes; where are all the doctors!?"

The doubt and difficult decisions didn't dissipate after the birth. The responsibility of keeping another human being alive was often overwhelming. Each little choice felt like it had the power to irrevocably shape her entire future. The weight of that often brought out strong, emotional responses to even the most benign decisions. The important decisions felt almost paralyzing. What if I messed up and chose wrong?

At first, I leaned toward keeping our kids vaccine-free. I thought the concern about vaccination made sense. There are countless reasons to distrust the pharmaceutical industry, and I didn't want to put anything artificial or unnecessary in my child's body. Least of all something questionable that protects from diseases that don't even exist anywhere near us these days. Still, I felt a nagging responsibility to hear both sides of the argument (largely because I had my heart set on a "mother of the year" mug).

I decided facts were my friends. I couldn't rely on word-of-mouth, friend-of-a-friend information. It was going to require actual research from vetted sources; I wanted the truth.
It wasn't easy sifting through all the false and deceptive studies to find them, but now that I have, I feel compelled to share them with any of you who may be struggling with this tough choice.

First, tell me why I need a vaccine.

Vaccines train your immune system. They give it a chance to build up resistance to dangerous diseases, so that if you are ever exposed to the real thing, your body is able to fend it off.

Vaccines DO contain disease particles, which is not only gross -- it's scary. However, the disease particles are dead or severely weakened, which renders them unable to cause the original diseaseEven very young children can easily handle them.

The immune system is far more effective when it knows how to identify and fight off what doesn't belong. Vaccines are like a wanted poster hanging in the saloon. They train the bartender to spot the bad guys and kick them out.

What's the deal with "herd immunity"?
I found the clearest explanation of herd immunity in a comic! Find it here, but essentially, epidemics are prevented when at least 80-90 percent of people are vaccinated. This means that the most important factor in promoting universal health is creating access to vaccination. Even those who are not vaccinated against a disease -- because they are too young, or have a weakened immune system due to chemotherapy, etc. -- are protected, because there are so many individuals with resistance that the disease doesn't spread very far. It takes a village, people. (Not the actual Village People, but like a village of people... anyway. Let's continue.)

What are the side effects?
Like all medicines, vaccines have some side effects. The common ones are mild -- redness, slight swelling right around the injection site, brief headache or fever. But these are actually GOOD to see -- these symptoms reflect that the body is responding to the treatment, and is learning how to deal with it. This is exactly what we want our bodies to do, so that we can react if we ever encounter the real thing. These common side effects are fire drills. Should the real thing happen, your child's body will know exactly where the nearest exit is.

There are rare cases of more severe side effects. Most often, these are essentially allergic reactions. These are serious, and scary, but occur almost immediately, and can be addressed by your doctor on the spot. This is why all patients receiving vaccinations are asked to be observed for a period of time before leaving the doctor's office. There's a point to making you flip through their back issues of Good Housekeeping magazine. They're keeping an eye on your little one.

Some side effects are so rare that it is impossible to tell if they are actually side effects of vaccines, or just coincidences. Interestingly, autism doesn't fall into that category. Autism occurs frequently enough that it can be studied, and it has been -- extensively. During my search for information I have found that the overwhelming majority of medical scientists agree that there isabsolutely no causal link between autism and vaccination. I know this can be a big one for many, though, so here are a fewmorearticles to read if you are concerned about autism and vaccines.

Read more about 'What are the side effects', and the rest of the article here.