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.

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.