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.

Christmas...a season of giving...and taking

Christmas for us could start as soon as the first Santa is spotted in the shops! For the last 5 weeks or so, we have been fighting a daily war for presents – and lots of them!

For the last 2 months all we have heard is: 'I want 10 presents. I want some Thomas, some Lightening, some Transformers and Ben 10."

Zaccy loves everything there is to love about Christmas. He asked us the other day while watching the iconic “Polar Express”; “Can we go to the North Pole?”. When we said that we couldn’t, he insisted that he had to go on the train (one of his many obsessions) and see Santa and the Christmas Tree. I don’t really think he wanted to see Santa (if any visit to the shopping centre Santa’s seem to prove), but I do believe that he simply wants to ride the train and get a ticket…a gold one to be precise!

Every night on the way home he would ask if he was getting presents. Every night before bed he would ask the same thing. Every morning he would get up and start all over again! We would try and explain how many days it was, but even that became difficult. We have an advent calendar which lets us put small chocolates in the pockets of each day. We filled it on the 2^nd or 3^rd and it normally helps. Zac understands that he gets one each morning or night and is very happy with the arrangement.

One day I noticed it was quiet in the lounge room where the advent calendar was hanging. I also remembered that the small step ladder was in there! When I walked in, I saw him standing on the top step, merrily unwrapping the chocolate Santa from the number 10 pocket. He had been able to eat numbers 3,4 and 5, missed number six and went on to eat 7 to 10. The coloured foil was all over the floor and Zac looked at me and said “Look, number 10!”

To make life even more exciting, his birthday is two weeks after Christmas! Last year almost every day he was showered in presents! On the day after his birthday party, he just expected another load of presents. This year, we have Christmas, then his grandparents are visiting for his actual birthday, then two weeks later we have his official birthday party with his friends! That’s almost a month of presents.

To prepare, we do a big layby to get us through the period. This year, we had paid the layby off early but as we live in tiny house, finding hiding spots for all the presents is really difficult. In the end Renee put them all under the bed and I hid them with whatever I could.

We were in another room and Zac had gone into our bedroom, which is not uncommon (he loves bouncing on our bed), and discovered his presents. Renee raced in and caught him and boy, was he excited. She brought him into the study where she loudly proclaimed that Zac had found some presents, which he obviously wanted. He had only been there a few seconds but was able to recall almost every toy he saw.

I snuck away to move them and hid them in boxes and under clothes and went back and explained I had to get Santa to come and get them and take them back to the North Pole.

“Ohhhh” was what we got and of course he had to go and check it out for himself. Once this was done, surprisingly he was OK with it. The concept of Santa coming in and taking them back seemed utterly believable.

A couple of days later, Zac went missing. Renee found him under the bed where the presents previously were. She asked him what he was doing to which he replied, “I’m being a present.”

We wont be using that spot for next years gift hiding.

It’s so hard to watch your ASD cherub try and understand all the complexities of Christmas and gift-giving but thank God for understanding family and friends who “get” that Zac cares for one thing and one thing only, presents, and lots of them! I love how when he gets a “soft” present he knows its clothes and simply leaves them wrapped or goes “Nope, I don’t want clothes”.

I know that over time he will grasp much better the concepts of giving and getting and that sometimes the old Great Auntie or the dottering old nana simply won’t give  you a present!

Hope your Christmas was just as grand as ours was.

I'm a bad parent...only on bad days....

I’m a bad parent...I know, I know...I can hear the collective “No you’re not!” and I agree. I am not like other parents who neglect or abuse their kids. Don’t get me wrong, but I am a bad parent because sometimes I fail to remember what my kid needs from me. I fail to remember that it’s not all about projecting some kind of perfectness upon my boy so society looks at him without judgement. Sometimes I fail to remember that his needs are greater than my own, that he needs to cry out his tantrum “right now” even though my need is to sleep, eat, shop, watch TV, write a blog, etc. Sometimes I forget that my kid sees the world so much differently than I do, I mean, I thought I had a good memory and an eye for detail! My kid can see a ladybug 20 meters away.

Look. I am not a bad parent, I guess I am just trying to prove a point. Having a kid on the spectrum is hard work, but having ANY kid is hard work. Being a parent is hard work, full stop, no return. But, I just wish I could have an endless supply of patience, because my kid deserves it. You know what I mean. We have so many of our own personal issues to contend with and then we have a kid with needs to grow! It can be a full on exercise in endurance.

There are times I am great at being an uber patient parent. I know we all agree with that we as parents can have searingly bright moments of glory. We do so good managing the meltdown in K-Mart, the poo smeared on the wall, every toy owned strewn across the floor, the sleepless nights, the fight to wash their hair or brush their teeth, the fear of all things invisible, the fear of all things visible, the tantrums, the mood swings, the depression, the anger, the violence, the hatred, the obsessions, the over-the-top excitement when they see the Golden Arches, the “it’s too loud”, the I-want-it-and-want-it-now’s (what I call “Veruca Salts”) and everything else in between that when we don’t manage it, its glaringly obvious.

The goods certainly outweigh the bad’s, don’t get me wrong. And maybe its just my well known ability to not be consistent (my teachers always said “He just needs to apply himself”) in dealing with my little boy that aggravates me the most. I mean, that’s what he needs. Full-stop, no return. He needs an understanding daddy, every single time it happens.

But I fail miserably. I get irritated, frustrated, angry, emotional, short, curt, and most of all impatient. I get frustrated when he won’t listen, won’t do what he’s told (even when its a matter of safety), constantly repeats himself,  yells, screams, yells some more, screams louder, talks constantly, presses every button there is too press, all because I am tired, busy, focussed on other things, reading, writing, working, sick as a dog, using the toilet, driving the car, checking the sugar content in the juice I just gave him, talking to someone else, checking facebook (which reminds me...), cooking, peeling potatoes, having quiet time....you get the picture.

I am not perfect. I’m not a perfect parent and I ask you, who is? None of us are. I love my kid and thats all there is too it. Sure, I forget that I am a visitor in his world often, but when I remember, it’s when I get the most out of my little boy that is Autistic.

Be the visitor in your kids world...at least once a week...might make you a great parent!

Ignorance is bliss...

I guess by now you have realised that my biggest gripe about Zacs journey so far is the ignorance of others, which is not fair really because I was once one of them! I too did not know much about Autism, but knew enough about learning difficulties and other disabilities. I can't blame people for not knowing, and I don't really but what annoys me and my wife is the judgement and the lack of grace extended by those ignorant people.

You see, on the outside, Zac is a very normal looking kid. He smiles, he talks ok, he introduces himself all at once as "HiI'mZacharyWilson" and he can do pretty much everything else a kid can do, but its the extreme behaviours that people don't understand. Hell, our families don't really understand them because they are not around him much.

Mention Autism and people think – disability. When Zac was first diagnosed in November 2009, I told a friend at work and she said, "Oh, I'm sorry" as if I had just told her he had died. Even recently, I was telling another work associate who is pregnant that I had a son with Autism and she looked at me and said, "Oh, thats something I should know about" and then asked if I Goggled a lot about Autism.

For many parents of kids on the spectrum, behaviour is the biggest issue, especially when out and about. I have heard and read stories of parents who are basically trapped at home because their kids "tantrums"( I wish we could call it something else!) get so out of control, the emotional distress on both parent and child is just too much to bare. We too have been the subject of stares and looks, rolling eyes and chinese whispers.

Renee was in Centrelink one day, and as we are in a regional area, we actually have an office for the aged and disabled. Well, she was in line, Zac was in the pram which was the last place he wanted to be. The line was full of older citizens and Zac was playing up, causing trouble and being loud. He was crying because he wanted something and of course, Renee had to do what she had to do, but the "oldies" in the line were all looking at her with their judgemental eyes and a couple of old biddies in front actually tutted at the noise. In the end, Zac needed to have his attention changed, so Renee took him outside and calmed him down then returned to have the same ladies walk by and said, as if it was their place too, "That's much better now, isn't it?". Makes you want to be violent!

Recently, we were at Nandos. Zac was sick and it was the wrong choice for dinner, but we went anyway. Zac whinged as soon as we got there. We didn't get the right table number and then the chippies were too hot. They had salt on them so it burned his little dry, cracked lips. Well, a young guy came in and sat at the table behind us. I was getting frustrated at Zacs constant crying which seemed to bounce off every wall and echo through the store. After much shooshing and comforting, Zac was still upset and then the guy turned to us an yelled at the top of his voice, "Will you f...ing shut him up...smack him or something."While that sinks in, yes its true and no, not one bit of it is an exaggeration. Needless to say we left, leaving a few choice words behind us,.

Ignorance does not just relate to the general population, I know of parents who refuse to accept the diagnosis that their child is on the spectrum as if ignoring it will make it go away or if accepting it means their kid is different. Hey, they are the same kid you loved before the diagnosis, Autism is not a death sentence, nor is it a disease...nor will it go away. Parents need to accept it – and as soon as possible because your kid needs you to fight for them!

Do I want more people to understand Autism? Sure. It cant hurt, but what I want more is that society becomes a more accepting place for my kid and other ASD kids to grow up in without fear of judgement or misunderstanding, but I cant stop that, I can only do what I can. That's why I love the website listed here. Zazzle.com.au has clothing specifically for autism. Tee's with great slogans like "If you stare long enough you might cure my autism, then we can work on your problem." There are some real pearlers and if it means that by wearing a teeshirt my kid gets less stares and moreunderstanding, hell, I will dress him head to toe.

Check out the website, its great! http://www.zazzle.com.au/autism+tshirts




 

Obsession....not the Calvin Klien kind!

Sometimes the tantrums are so bad you want to crawl into a hole or be buried by an avalanche. Sometimes they are easy to deal with, but the majority of tantrums are simply battles that you need to pick. Often you win the battle to win the war but sometimes you lose the battle, but still win the war!

However, the tantrums in public almost curl your toenails and make your hair go grey in an instant. There is nothing like the shrill scream of a child after you have just ripped toy they so desperately want from their pincer grip.

Sadly, it’s the ignorance from onlookers than make want to slap them down in a fit of frustrated rage and scream “how dare you judge my parenting!” Little do they know just how many tanties you have had to navigate. They don’t know that it’s a daily occurrence. They don’t know it’s not just misbehaving.

This is my lead in to Zac’s many, many, many obsessions. My god! Had I known how obsessive an Autistic kid could be I would have prepared better! I would have known buying him a matchbox car with every shopping trip would turn into a daily fight for toys, cars and everything else in between. I would never have given him his first Happy Meal. I would probably have never shown him the movie Transformers.

MY God, the tantrums we have had over a $2 car and not getting Macca’s when we pass the golden arches! They are sometimes so bad that they spoil an entire night! Trying to teach an Autistic child limits is probably one of the most challenging things. Learning as an adult that Zac’s behaviour is not him being naughty but simply not understanding has been the biggest learning curve for us as parents. I wish that when his melt downs happen in public I could surround us in a bubble so that no one could hear or see what was happening! No one else understands my boy so when they stare with those judgemental eyes, like my son is the naughtiest child they have ever seen.

My son is Autistic, not naughty. I don’t know that any child is really naughty. I think naughty is a word adults give to actions that have become unacceptable in society. Misbehaving is your child not knowing that there is a better option! You should see the things Zac does! They are so utterly frustrating and what many many parents would label “naughty” but to him they are normal. Zac likes the sensation of things falling over his head. In the past this has been stones from the driveway, dirt, more dirt, scoria, polystyrene, rice, sugar, salt, socks and general laundry items, washing powder or any powder for that matter and recently, coins from the coin bucket.

This is a sensory game for him. It annoys me no end, but I have to understand it from his perspective. I have to be the visitor in HIS world, not the other way around. I am the boss yes, but I am not the commander of his world and what I see as "naughty" he sees as normal.

But back to the obsessions, Zac is not just obsessed like teen girls are with Justin Beber...actually strike that, he’s probably that obsessed and he is only 4! His current obsession is Transformers. I watched the movie with him about 3 months ago. Since then we have had to buy him Transformer upon Transformer. I blame Renee for it. She got the first one. But no matter how much I swear not to buy him more, I end up getting them and not because it’s easier than dealing with the tantrums, it’s because we have turned it into a reward.

That’s one of the tips we have been given but Zac’s early intervention team, use the obsessions for good rather than just for the sake of it. Now we have a kind of rewards chart which Zac works towards a toy of his choice at the end of the week. He is only 4 so we don’t chalk up the “naughty” days, but we do reward the better behaviour. It’s helped. His tantrums are much less when he has a goal to focus on. It’s our reward system that works for us.

But no matter the obsession, I swear that the makers of the current batch of Transformers are a misogynistic pack of bastards! They don’t make these toys like the used to!  

Starting at the beginning

Autism is not a death sentence, nor does it mean your child is Rain Man. It’s fascinating just what you don’t know when you hear the word Autism. It’s amazing what images your mind conjures up. Think about it for a minute, what did you see?

I am hoping that you saw a human being first and foremost. Hoping that you saw a child, teenager, adult that needs and wants love. Hoping that you didn’t see with judgemental eyes someone that’s difficult, misbehaved, or has learning needs. I am hoping you didn’t see them through eyes of pity.

The reality is that most people will see this image and its through no fault of your own.  Society has misunderstood Autism for years; it was only as recent as the 80’s that Aspergers was even recognised as a separate spectrum disorder. It’s only been in the last 20 years that Autism was  recognised as being a spectrum of more than 100 disorders; proof that no one has really known what Autism really is and that every case is different.

The fact is that Autism affects around 1 in 1000 Australians and is more common in children than cancer worldwide. Those are not numbers to scoff about and there is a real fear that Autism is actually being “underdiagnosed” as opposed to something like ADD/ADHD which seems to be a lable every other kid has. It’s highly likely that you or someone in your family is Autistic and no one knows. There are sadly many adults that sit within the Autism spectrum and they don’t know that their little quirks and unique behaviours are actually part of a disorder.

Autism is not some easy disorder to describe, it’s not even easy to diagnose clearly. I guess it’s why so many parents are like us, you know something is wrong, but you just don’t know what it is and so the hunt begins, or at least it should!

For us, the hunt began simply. Zac couldn’t speak properly and we knew it was more than delayed speech. There was something a little strange, something that we could never put our finger on until we got the diagnosis in November 2009. When that happened, so many things were understandable.

A three year old visited the house in early 2009. He was the son of an electrician who had to come out at night to fix some of my bad handy work. The little boy could speak so clearly and succinctly that I almost died when I was told he was younger than Zac. When the sparky was in my roof, the boy asked, “Where’s my daddy?” I remember thinking later, that Zac could never have asked that question of me. He could talk, but it was of no consequence. It had meaning, but only to him. He formed  words without problem,  but there was no way you could have a conversation with him. I couldn’t ask how he “felt” because he would not be able to tell me, but ask him about Thomas the Tank and you would get the entire plot of one of the episodes.

The other thing that was odd was that he grouped, lined and sorted his belongings. It would be a surprise if we found his cars in a pile as opposed to a line along a window sill, table top or any other flat surface.  As he got older, the grouping began. I walked in one day to see piles of cars and trucks sorted by type. There was a pile of metal ones, plastic ones, Thomas trains, other trains and a small pile of broken toys with no wheels. When Renee saw something similar on a TV show, alarm bells rang.

But to look up “Autism”, Zac seemed to “fit” some of the diagnosis and then not so. Little did we realise that every child is different.  My limited understanding of Autism was a child that was cut off from the world, who  could not function “normally”. I had also heard of Jenny Mccarthy’s work on finding the window into the Autistic child. I saw her on Oprah. I had seen Rain Man too. Wasn’t he Autistic? Don’t get me wrong I have grown up around kids with learning deficiencies and learning disorders. I thought that I knew quite a bit, how wrong I was!

And honestly, discovery has been a massive journey and learning curve, one I hope to share with you along the way.

Zac is now 4. He is the light of my life. I am here to ensure that he knows he is different, but he is not less. I am here to tell you my son is different, but by no means is he anything less.