Ch ch ch...choices!

Why does it seem harder to make decisions about important matters when you have an Autistic kid?

There is so much to consider, so much to take into account. The bigger the decision, the more contemplating you seem to do. If your autistic cherub is averse to change, like Zac, even the simplest and smallest change can set off an avalanche of stress, tantrums and meltdowns, developmental and behavioural retreating and a day/week/month of difficulties.

But, I am a firm believer that you can not allow your child to imprison you within the “fear” of a meltdown.

Your child, our children, live in a world that is different to the way they view it, with social rules and complexities that they do not understand or have the capacity to assimilate too. Where we see white, they see every shade. Where we hear a room full of people, they hear a rock band in a small room.

In their life, they create their own rules and routines. Zac was blinkered in to travelling the same way too and from Kinder that any diversion was cause for concern. Genuine concern.

If we said we were going somewhere like, Target, we had to go straight to Target. No diversions.

When we stay away from home, when we return, Zac is difficult for about 3 days until he settles back into our routine.

But I am a bit of a masochist sometimes and will purposely alter plans, travel destinations, routes and routines just so Zac can understand that life is not as “narrow-minded” as he sees it. There are things he can’t control and he needs to understand that and it is my job to ensure that – even though reasoning with him about something changed is  the most difficult thing in the world. Him being challenged now, will help in the future.

Renee and I have made some tough decisions over the last few years. We have also made choices that have been based on the threat of meltdowns; in the best interests of Zac, us and the general population.

The biggest decision so far has been to remain in the small country town we live in after having moved from the “big-smoke” four years ago. Something about Zac going to a school of 150 students, 5 minutes from home seemed comfortable. Then when we met the Principal, there was no denying that Zac needed to be there.

A few weeks ago, Renee rang the Principal to begin the transition from Kinder to school. It is something that we need to prepare for 6 months in advance. This kid has been at the same kinder for a year an a half, with the same teacher and same rules, so getting him settled into school is going to be a huge transition.

Renee was so excited when the Principal told her to send in every report she had about Zac so that they could start writing their proposal for an integration aide.

When she met the Principal, our fears and concerns about Zac heading to school were allayed. This Principal showed Renee the “calm” space they created for another autistic boy, talked about how they would support Zac and his transition to school.

It was the proof we needed to confirm our decision.

This week we were presented with another important and very hard decision to make.

Renee discovered there is one place available at the Winchelsea Kinder. He currently attends Kinder/daycare in the city close to Renee’s work and has been there nearly 2 years. He has had the best care and teacher. We couldn’t have asked for more.

But, with an available spot at the kinder, Zac would be able to spend 6 months with kids that will be in his prep class at school next year. It means that he can potentially make friends, something we desperately want from him. The transition to school would be better planned and cause Zac less stress.

It means Renee would have to finish working though. There are no child-care facilities in our town and we have no one to look after him during the day.

So the decision is a tough one to make, but when you weigh it all up, it’s not hard to see the value and positive outcomes of making the choice. Do we choose to live on one very meagre salary so that he can have the best chance and start at school? Could he transition to school without problem and we simply take the chance? Is money really worth it in the end?

It’s the things we do for our kids. That’s what counts.

A friend gave me this quote:

”If choosing between work and family, choose family – work will always be there later"

Acceptance....just what what we needed

We have just got back from dinner with friends and I have been inspired to write a new blog.

Dinner was with the family of Zacs best friend, Bryce. Bryce is a very special kid and has an important place in Zacs life. They know each other from kinder last year and we are not sure what or why it happened, but Zac and Bryce just clicked. They are the absolute epitome of BFF’s!

Bryce’s mum, Belinda, works at the day-care centre that Zac goes to, so it was only inevitable that we would all meet socially so that the boys could meet for play dates.

Make no mistake, Zac is totally obsessed with this kid! Bryce just seems to get him and understand what he needs and how to play with him on his level. It is great to see them together. I love hearing Bryce calm Zac when hes having a tantie and I have even heard Bryce make deals with Zac they way we do to get him to do something.

What’s amazing is that Bryce does this without intervention from adults, he has not been taught how to deal with Zac by anyone and does it all with an insight and patience that I wish all kids had.

This year, Bryce went to school while Zac stayed back to complete another year of kinder. It was a hard adjustment for him returning at the start of the year and both Zac and Bryce missed each other like the desert misses the rain, so we invited Bryce and his family for dinner, even though it’s frowned upon by management to “fraternise” with day-care centre staff, but this was about Zac maintaining a close friendship with his little mate.

One of the greatest fears we have is that he will not be able to make long lasting friends, that because of his nature and mannerisms, what we lovingly term “eccentricities”, kids will not want to befriend him. Gratefully this little boy has accepted him with open arms and without want or reward.

Dinner last night was the first invite we have had to another family’s house since we moved to the country 3 years ago. One of the first things to vanish from your life when you have an autistic child is your social life. For us, it’s been a lot by choice. We don’t go places because it can be tough and you don’t end up enjoying yourself because you’re always on edge making sure your kids not touching something, getting into places they shouldn’t, or playing with things off-limits!! The other issue is that new places, rules and routines set off melt-downs, tantrums and difficult behaviour either there or when you return home.

But last night proved us wrong.

When we arrived I was slightly on edge. You just can’t presume anything from an autistic kid, but the most generous and thoughtful thing happened. Bryce’s Dad, Dan, presented Zac with a 5-box of Hot Wheels cars (for anyone who has read my previous blogs will know how obsessed with cars Zac is!). Dan openly admits he has a soft spot for Zac. I also think he is really proud of his boys, especially how good they are with “different” kids.
What amazed me and touched me was that Dan later said that he got the cars because he knew that Zac might get a bit upset in a new environment and if he had some cars, then at least he would have something that might calm him.

No one has ever done that for us before. Gone out of their way to make my kid feel safe and accepted.

Don't get me wrong, we have close family and a friend who understand Zac’s nuances, but it amazes me that someone has thought beyond themselves to make my boy feel safe in their home. What Dan did was simple, yet made a world of difference to Zac, and us.

It speaks volumes to me about this families heart.  My son has been accepted into a family with no question about who he is or what “problems” he has. Belinda talks about him with affection and love and how he brings joy to her day at work. Dan talks with a smile about how he used to be greeted by Zac each day when picking up Bryce and secretly loves that Zac says he has “fire on his arms” referring to his tattoo.

AND! And, and the fact that their 6-year-old son can openly accept Zac for who he is, is a true testament to the way they are raising their kids. This is the acceptance and tolerance that all kids should be raised with and these parents are doing it without second thought.

We thank our new friends for the acceptance of our family....and for the invite to dinner!  

Like a lioness with her cub....

Zac and I enjoyed some sunshine at the park last week.

I don’t often take him to the park, although I should try to more regularly, as I get anxious about other kids.

Today, there was a small group of kids there around the ages of 5 and up.

Zac did what he always does and ran up to them, automatically thinking they would want to play with him. He told them his name was Zac and then went round and asked each kid their name, point at them as he did.

I stood and watched like a lioness over her cubs. It’s what I always do because I know that kids don't get him.

My greatest concern was realised when I saw a young girl, maybe 7 or 8 ask the others with a slight giggle in her voice, “What’s wrong with him?” Granted, all he did was talk and it would have been difficult to understand (I even have trouble sometimes!) and he would have only talked about what was important to him, which can leave other kids out in the cold because they have no idea!

I decided to let it go and see how it went and watched closely from a distance. They followed Zac around kind of including him and letting him talk away . It was when I heard them mimicking him, (something which happened to me a lot in school because of the way I talked) that my skin started to crawl. Zac is not disabled, not physically challenged, nor has any other physical impediment to make his “disability” noticeable. Because he communicates differently, this girls assumption that "something was wrong" or that he was challenged,  meant he was different and possibly worthy of ridicule.

You can hear it in their voice.

Zac ran off to play with something else and some kid followed asking if he was a chatterbox. He would have been about 5. How did this kid know what a chatterbox was? Like Zac would know or even care so he just kept playing.

It was interesting to notice that Zac played in his own way as his brain and interests dictated. If he wanted to be on the digger, he was, if he wanted to run across the bridge, he did, thinking that by the kids just being around and near him, they were playing with him and wanted to be with him. I doubt he wanted to be "included", but wanted to be friends just the same.

When he went off to run down the hill, some kid decided to get a dirty, empty bottle and filled it with sand. He then (right in front of me) tried to shove it in my son’s face, forcing him to drink from it.

Zac simply ignored it and ran off, but they followed, laughing like a pack of Hyenas. When they came back up the hill, the boy was still trying to give Zac the bottle and was getting all up in his face, Zac mimicked that it was yukky and that he didn’t want it and kept on.

When the boy tried to grab his face/head to “make” Zac drink from the bottle, I  stepped in.

“Hey!” I yelled. “Watch yourself, kid.” I scowled in the angriest face I could muster without picking the kid up and slapping him.

Taking Zac away was difficult.

“I want to play with my friends.”

“They are not your friends.”

“Yes they are, they love me”

“No Zac, any kid that wants to make you drink sand, is not your friend.”

Later, I tried in vain to teach Zac that not every kid is your friend.

Looking back, a few days on, I can’t say I blame these kids. They are the product of their upbringing. They are not significantly taught about tolerance in school. If they are not brought up with “different” kids around them, then anything that is obviously different is difficult to understand.

I don’t want my kid to be viewed as “strange”. But I don’t think I can help that.

We need to teach our kids about tolerance. Not all disabilities can be seen, tolerance for everything different is the key to kids learning and understanding that its OK to be different, disabled, or challenged. How much of bullying is simply intolerance?

What are you doing to teach your child about tolerance?

You know what? I know Zac will be OK, even if our hearts break. My son knows love! He knows a deep and passionate love. We do all we can to tell him every day. We hug him and kiss him and even when he doesn’t want a bar of it. We are raising him IN love so that he will know HOW to love others.

He will fight hate with love and he wont even realise he’s doing it.

Thank you so much

Hi everyone.

It's such a wonderful thing to see that this simple blog, which has been going since October 2010, is not seen in nearly 10 countries and more than 1000 people a month.
I love reading your comments and each one of support and agreement lifts our spirits.
The truth is, we all have a story to tell because we are all on a journey of discovery and not all journeys are the same. We all need to share our experiences and lift one another up for this journey is a difficult one.

Please repost this wherever you see fit! Share is on FB and Twitter! Think about starting your own blog!

Much love

Jason Renee and Zac Wilson

Dear Denise Scott (aussie comedian)

(Warning - offensive language used)

Dear Denise Scott,

I watched a clip of you at the esteemed Comedy Gala for 2011, a place you rightfully should be as I think you are a great comedienne, sadly, your skit infuriated me and I know I am not alone.

You will probably never read this. You probably don’t care. I know that anything that happens in this world or in society is free reign for a comedian. I love a good laugh and enjoy the humour of many comedians. I’ve enjoyed laughing at crass humour as much as clean. I love it when a comedian points at others and makes us laugh at them, I admit that freely. I find it hilarious when I know exactly what they are joking about.

I also know that comedians can hide behind their humour as if it is an excuse that they can say anything they want, no matter what offence has been caused.

I also know that comedians are humans like me, prone to make mistakes, and jam their foot down their throat. Occupational Hazzard I guess.

Your segment was offensive in the first 2 minutes. The instant you joined the words “I hate...mild asbergers(sic)....and fucked up people with behavioural problems” was the instant you offended parents of  1 in 4 children that are on the Autism Spectrum. A “fucked up problem” that effects more kids than cancer, more kids than almost any other syndrome or disorder, more kids than you know! The instant you uttered those "hate" filled words, you offended adults who have moderate or mild autism who have suffered at the hands and mouths of bullies their entire life, for reasons they can’t explain, nor understand. You offended families, workers who spend tireless hours helping them and even parents of kids with other disabilities.

What I find funny is that my kid would not have any clue what you find funny about him that you would label him as “fucked up”. I'm glad you stopped short of saying "retard".
You know what I find funny? It's that he lives in his own world and has no ability to understand social situations as they make him uncomfortable, which would mean he would likely never be in your company. And even if he was, I wouldn’t apologise if he made you uncomfortable or was badly behaved in your eyes.  

You have every right to say what you want and talk about in a humorous way what pisses you off, but using autism as the butt of your joke about how much you “hate” people and how they are only “fucked up” (implying that everyone else is not),was wrong. Just because you cant see it Denise, does not mean it’s not real.

You can’t see love, but I bet you know that’s real!

My kid and any autistic kid are not badly behaved and they are not fucked up. Autistic and aspergers kids and adults are....not like comedians at all.
I know you didn't mean it. I know you could have chosen a better line.
I know your not mean or mean spirited.
I know you are a mum.
But...
I challenge you to spend some real time with a family that has an ASD kid.

I also challenge you to find the funny side of autism and do a benefit concert for Autism Victoria to help raise funds for kids and families dealing with autism.

I also ask that you remove the line from your next sketch.

How did we know? We just did....

How did we know?

We don’t get asked all that often if we knew that Zac was autistic or had a problem. I guess we just always kind of knew.

Thanks to an episode of the awesome show “Judging Amy”, we were able to set the wheels in motion that would end up with Zac assessed for Autism.

In that episode, there was a character with a child who was labelled “autistic” and they implied this by showing the child lining up cars. We now realise that this was kind of stereotyping autistic behaviours as a-typical, but we also appreciate that people need some crystal clear images sometimes to help with their ignorance.

What is hard is that Autism affects each child differently. Nothing is a-typical. Its not called a “spectrum” for nothing. There are more than 140 different aspects of Autism, then there’s the generic “not otherwise specified” diagnosis that bundles kids into a pigeon-hole of “we know its autism, just not sure which kind”.

In our reality, Zac lined up cars - all the time. He didn’t play with them like he was pretending they were driving down a road, no, he just lined them up, spun their wheels and investigated their every aspect closely.

One day Renee walked into the room and he had sorted out his cars. Interestingly they were sorted into groups of “same”. He was just 2 years old. It was kind of spooky.

Once diagnosed, it made a whole lot of his behaviours obvious. From birth he displayed certain characteristics that we labelled as “eccentric” that now in hindsight, were part of the disorder occurring in his mind.

These behaviours were more sensory as opposed to  behaviour and it can be interesting looking back.

He loved to be swaddled. Not just wrapped, but swaddled, in a cocoon until he was about 8 or 9 months old. He also didn’t laugh a lot as a baby. He didn’t interact with others like other babies would.

Then there were the milestones that were missed or delayed. He barely crawled and went to walking at 13 months. He spoke little and it was only what he had learned from TV shows like Thomas and Elmo. By the age of 2 he still barely spoke and what we know now as echolocaic language, Zac could not have a conversation with you or tell you how he felt.

Then there was the fact that he did not play with other kids or get involved in any group time at daycare. He simply played on his own. And no matter how much Daddy tried to get him interested in things other than cars, Thomas, trains, and wheels, he would refuse and be happy in his obsessions.

As I have blogged previously, Zac is not ashamed of his obsessions. Hell, he has no idea he is obsessed. This was likely our biggest indicator of the fact there was something unique about the boy.

The meltdowns were also the other key indicator. The fact that he could not calm himself and that he went from zero to tantrum in just as many seconds also made us cock an eyebrow.

“He’s just slow”, they would say. “No, its more than that.”

“He’s just lazy”, one friend said. “No, its more than that.”

“Just wait for his tonsils to be taken out”, the doctor said. “No, he can’t have a conversation with us.”

“He’s not obsessed, all boys love their cars, I loved my cars.”, the father-in-law said. “No, this is an obsession.”

“There’s nothing wrong with him”, the ignorant one said. “Thats because you don’t know him.”

What we are most proud of is that we got the ball rolling. Like my own mother, who did the same  with my brother (and never gave up), we went into our paediatricians office with examples and a firm belief that there was something askew with our boy.

Even when the assessment was done about 6 months later, the psych and speech therapist agreed that Zac was on the spectrum, only moderately, (however, there are days where he is firmly on the spectrum) we nodded and smiled. They even asked if it was something we were expecting.

It was, we had known all along.

I'm a wanderer, yeah a wonderer....

Autistic Kids wander, they actually have a name for it.

If you haven’t heard, this week a 5 year old autistic boy was killed by a passenger train after wandering on the tracks. http://www.theage.com.au/victoria/boy-had-roamed-before-tragedy-20110331-1cngk.html

I was on that train.

We didn’t know at the time that it was a child that had died. We just knew it was serious.

On my way home, Renee rang and told me it was a child.

The next morning I found out he was Autistic.

I instantly thought of my own boy, who is 5 and Autistic.

We have been lucky.

Zac is a wanderer. He can’t stay still. He has to go where he feels he has to go.

We are lucky because that’s mostly to the toy section of Kmart or Target, but its difficult to keep him with us.

Kids wander, don’t get me wrong, but an autistic wanderer is far more dangerous. Its easy to loose kids, we know. I remember being lost as a kid, so does Renee, but we knew we were lost.

Zac wouldn’t care. Zac wouldn’t even know he was lost or know what to say if he was asked.

That’s the difference with kids on the spectrum, their understanding of things we take for granted is skewed. They often don’t understand right from wrong, and its not an excuse, its not bad parenting, its just reality.

Zac wandered across the road at the age of 2 and into a neighbour’s yard. Still not sure what fascinated him, but there was something in there he wanted. He was not yet diagnosed. Someone had left the gate unlatched (me I think) and my mother-in-law was visiting at the time and took it real bad thinking she had done something wrong. It caused a major argument (which was disappointing) and it was all because Zac had wandering legs which he could not really control.

We moved to a small country town that had not decent fences. As I write this, I can look out the back at a 50 year old fence and see a huge gap into the neighbours back yard. Thankfully there is wire across it so Zac can’t get through and see the cats that he thinks are his. He meanders around the yard in his own world with his own plans and desires, looking for anything he can get his hands into. If the door is open, there is no doubt he will quickly end up outside, and if the wire door is latched, he has no issue finding a chair to stand on to open it.

The worst case we have encountered is when we went to the shopping centre one afternoon. Renee was looking for some accessories for her outfit to a wedding the following day. I was outside the store with him, then he went into see Renee. In a matter of maybe 2 minutes, he was gone. And when I say gone, I mean – G.O.N.E.

The following 10 minutes were the most harrowing we had ever experienced. Your heart sits right in your throat beating with every frantic step you take. Your mind races, thinking about where you last saw him, what he was wearing and trying to work out where he could possibly be. Your eyes search every store, glance over every kid. Then the panic starts and you have to fight the lies your mind tells you – that he’s been taken. With every breath you reassure yourself that you will find him.

After I had gone down as far as I thought he could go in only a short time, I went back to Renee who had still not found him. Her face was white with fear and I knew that she was thinking everything I was. Our kid liked to wander and now we had lost him on a busy Friday night in a huge shopping centre.

Thank god Renee thought of Target. I raced there immediately and straight to the toy section.

There he was. None the wiser, not aware of the fact that he did something wrong nor concerned with the worry. No, all he wanted was a Transformer.

Zac didn’t get a toy that night. We went straight home.

Renee and I were both so distraught.

No one considered it strange that a nearly 5 year old was wondering the mall on his own.

And now I think about that little boy who was also seen crossing a major highway and no one stopped to help or called the police.

Have we become so self absorbed that we can no longer see when a child is in danger and think to help? Has society become so afraid of itself that we are afraid of what others will think?

That little boy could have been saved.

My heart breaks for his family.

I have a dream...do you?

“Are you OK?”

“Yes…just!”

It is so hard being a family with a special needs child (god I hate that term!) let alone being a family without one.

So much of our time is spent managing the household that when you have a child on the spectrum, you don’t seem to find any quality time for yourself, your spouse and sometimes your family.  

We know how you feel. We have one ASD Cherub and he is only moderately Autistic, but still, we spend so time explaining, answering a million of the same questions, doing OT, doing Speech, going to intervention meetings, talking, talking, talking, talking with teachers, talking with family, explaining what ASD is, researching resources, arguing, managing meltdowns, arguing some more until you fall into bed at night hoping that tomorrow will be a new day with more time for yourself. BUT, when you get up, it’s only more of the same.

What we found is that there is an amazing wealth of support and  resources out there, but you have to know where to look and who to ask. What we also found is that the best advice and the best support came from parents with kids on the spectrum but locating those parents was not easy going. We assumed (wrongly) that there would be support groups all over the place, but there’s nothing and there’s even less when you live in rural areas outside major rural cities. This really is a sad inditement on the state of affairs when dealing with kids that have special needs –including all aspects of Autism. But it’s not really anyone’s fault. No one person or organisation is responsible for it, and as much as we wanted to do something about it, time as been against us!

But we have a dream.

The Retreat for Special Needs Families

Renee and I have always wanted to run and operate a retreat of some kind which has taken all sorts of weird and wonderful incarnations. When we were younger, it was my hope that I would run a farm that young adults (and adults alike) could come and work for a roof over their head and food on the table. Renee had a dream of running a community centre where youth could drop in and get help for anything they needed. As we grew (older and together) the retreat changed and looked like a place where anyone could come and reconnect spiritually (no matter what you believed) mentally and physically. Then, it was an artist’s retreat, then it was a leadership retreat. Then, it was nothing.

When Zac was diagnosed, it became clear and apparent that we would open a retreat for families with special needs kids.

The dream was reborn and  we have been  thinking on it for the last couple of years, and now, the dream  is around 15 years old!

A dear friend of ours had a dream that was birthed in 1984 and came to fruition in 2000. No matter what or where she went, she knew that every step she made was to fulfil this dream and vision and we were along for some of the amazing ride.

I recall her talking always about never letting go of the dream, seizing every opportunity and  never losing sight of the bigger picture. She always said she was living testimony that great things can be achieved when a vision is given to you and the dream is placed on your heart. She walked (often ran) with such passion and belief that when it came full circle, she needed a new dream!

It’s these words I have held in my heart and mind for many years. I have no idea what I am doing right now that is going to somehow make a difference later, all I know is that I have a nagging need to find land, and a good piece of it!

When I get bogged down in the details and the concern and  the great old question “Where will you get the money?”, I remember another friend who taught me in a leadership session about “just doing it”. She is a walking Nike ad, literally! And no matter how often she had “No, sorry” to any idea she had, she just ploughed on ahead and achieved great things. She never worried about the details and encouraged me to think the same way.

Our retreat will be a place where families can come (free of charge) and reconnect with themselves and find time to just take the space to breathe. Breathe in life, air and peace. It will be a place where the question “How are you?” will be asked and its hoped that if you feel comfortable enough to share, you will answer as honestly as possible without fear of judgement or raised eyebrows!

It will be a place where your kids will be looked after, where you can bring them without worrying about meltdowns, screaming matches, condemnation or breaking something. It will be a place where your kids sensory needs will be met with rooms of bubblewrap, slime, flour and rice. Where they can get filthy and no one gives a shit because all the guests will have had the same experiences as you.   Your kids will ride horses, pat sheep, chase chickens, collect eggs, get licked by a cow or spat on by a llama. They will feed the animals, hold a guinea pig, quack like a duck. Their play will be monitored by volunteer OT’s and other therapists –and you won’t have to worry about a thing!

While the kids play, you can take a walk to the Tranquil Lake and throw a stone into the water for every burden you carry and  hopefully let them go. You can cry silently under the Willows and let their branches take your tears to the heavensd. While they play, you can  reconnect with you partner, kids or yourself or join in with a support discussion with a qualified support worker.

At night, we will celebrate with carnival atmosphere, firedancers and acrobats, jugglers and musicians and give each visitor an opportunity to express themselves creatively and artistically – no matter what your age or skill!

Everyone will be treated with love and respect with the hope that peace and joy are in abundance.

This is our hope and our dream. One that has tiny feet on it which need to grow but you can see there is already a strong vision.

We all need to dream, our ASD kids might not understand what that means, but they still need to dream for without dreams, we are empty shells.

Good luck in your dreams and plans...and always keep moving forward.