There are many days where raising two boys on the spectrum is challenging. I have days where I hold back the tears every single minute of the day. I still have the days where I am just so angry that my children have so many challenges. I still have my bad days six years into our journey, and I probably always will. I am sure it is just part of being a special needs parent.

There are many days I just want to get inside the body of my son with severe autism and know for myself what he feels. I watch my son and how he has to move constantly. I watch him get frustrated with not being able to communicate to me.  I see his challenges daily. I watch my other child have difficulty making friends. I see them both struggle with their anxiety, and it is just gut-wrenching as a parent to watch.

Nonetheless, through the heartache of watching autism’s daily challenges and living these challenges with them, I see the beauty right before my eyes every day. I would do anything–as most parents would–to turn their challenges into strengths. We continue to work on their challenges daily, and my hope is that they’ll learn to overcome their challenges through their therapies. However, the beauty that this journey has taught me far exceeds our struggles.

When I get to hear my son with severe autism laugh and giggle, my heart explodes with joy. His giggle is so cute. I long to hear it daily, but don’t. I wish he could look me in my eye every day, but those moments are so few and far between. However, when they happen, there are just no words for the joy inside that moment.

There is nothing like the triumph I feel when I see the happiness in one son’s face when he makes a friend. His face just radiates with so much joy that it makes all the heartache before that moment go away.

In the beginning of our autism journey, I admit that there wasn’t much joy to be found. It was hard dealing with the new diagnosis and new life that was handed to us. My days and nights were mostly full of wild, out-of-control children who did nothing but have tantrums and meltdowns. Sleep simply didn’t happen in our house. Life was hard and is still hard. However, through the past few years, we have made some progress and the joyful moments behind all the hard ones are really starting to shine through.

It would be very simple to not see the beauty in each day. It is very easy to get locked up in challenges and to simply focus on them alone. However, as we grow in our journey with autism, we are seeing the small things in life and rejoicing with each tiny step that we make.

In any life comes challenges, but with those challenges come beauty. It is hard to see at first, but it is there.  I challenge you to see the joy in your day no matter how hard it is. I know it is hard, but once you do, it can be amazing.

 

I chose a long-sleeve top to wear, once again, to cover the bruises and the scratches. Too many questions, raised eyebrows, and stares to risk showing my bare arms again.

I was attacked, again, yesterday.
So was my daughter.

We were screamed at, clawed at, and scratched.
Last week, my daughter went to school with a black eye.
There was no hiding from it that time.

There are times during the day that I am scared: scared to say the wrong thing, scared to open the blinds or the front door, scared to leave the room.

Some of his triggers I know; some I don’t.

He is unpredictable, strong, loud, intimidating and aggressive if things don’t go his way. One minute he is sitting quietly, the next he erupts.

Neither of us wants to be the cause of the next outburst, so we walk about in silence sometimes, doing whatever it takes to keep him happy.

Then it happens.

Due to something we had no control of, or even knowledge of, we are the ones facing the brunt of the explosion. Things are thrown, chairs overturned, doors slammed.

Glasses are broken into tiny pieces in an instant, just like the fragments of my heart.

I watch my daughter tremble as I am dragged across the room and, on this occasion, even outside. He wouldn’t let me back in for hours.

I paced the street behind him, begging him to come inside, telling him it was OK and we would sort this out–desperately trying to calm him down for his sake, my sake, and my daughter’s sake.

Then it flipped back.

The cause of the issue resolved in an instant and–bang!–we were back to happy and playful in the house like the whole thing was just imagined.

Like it never even happened.

He can forget. We can’t.

He won’t talk about it. He can’t. When it’s over, it’s over, end of story.

But for us it isn’t.

I have had enough. The next morning, I set about calling for help. I searched the Internet for helplines, advice pages, charities, and support. I read sites through tears.

“Who is doing this to you?” they ask, their tone implying sympathy and compassion.

“We want to help you,” they say.

“You don’t need to live like this.”

“We will get you moved to safety.”

There is help! I hear myself cry. They can make referrals for the person causing this, they can rehouse me and my daughter in a place of safety, we can access counselling and support.

They all assume it is my husband.

If it was, there would be help and support available, both immediately and longer term.

Then I tell them something nobody wants to hear. There is silence at the end of the phone line, followed by a whispered, “Sorry, in that case there is nothing we can do.”

He is a seven-year-old boy. This is severe non-verbal autism.

The cause of the dragging me around the streets was a neighbour with a door open. He can’t cope. He is scared. He doesn’t understand. He needs help. His only way of coping is to have a meltdown.

What if it was my husband doing this? Well, there would be so much more help available; so many wonderful charities and groups ready to come to our rescue. But when I tell them it is a child–my son–and that he has autism…

Silence.

—-

I will be criticised for talking about this. I will be blamed for not being able to control my own child. I am breaking a major taboo in writing this.

It has to be talked about. Too many are struggling alone. We are one of the few, as we’re now getting some support. Don’t suffer alone. Let’s stop the silence about living with children with challenging behaviour and autism now.

It’s a muggy summer morning, just before 11 a.m., and parents are gathering along the edge of a field that is laid out with brightly coloured objects – balls and sacks and bean bags and tennis racquets. We don’t know anyone – my son was late to move to the preschool room and has only been there a few weeks –  so we huddle together, my husband and I, whispering our worries about whether this is a good idea.

It is sports day, and just as our nerves begin to take hold, there they are – a steady stream of bright little faces, marching obediently in line from their classroom. They walk in a careful line, not holding hands, making their way down the hill in flashes of colour.

We search. There’s our boy. He is holding hands with his key-worker; he can’t make his way down the hill on his own. One hand grasps hers, the other is in his mouth, a tell-tale sign of anxiety and upset.

My chest aches a little. Is it selfish to want him to do this? To walk with his classmates, to take part with his classmates, to do all the things the other little boys and girls and their parents do? Should I have kept him home today?

The field is filled with people he doesn’t know, unfamiliar faces and voices. We wave and call his name but he doesn’t seem to see us. He stares off into space as the children start to line up for the first event – the sack race.

My boy’s motor skills are far behind his peers. He can’t run and jump like other nearly four year-olds do. He finds changes in routine incredibly difficult, noise and crowds overwhelming. He needs help from his worker to get the bag on, up to his chest. The whistle blows.

The other children begin and immediately the field becomes a frenzy of noise and activity – jumping children, shouting parents, sacks flying up and down.

Our boy tries to jump. He makes little staggered movements, half-way between jumps and steps, and he moves so, so slowly. He looks up. The other children have reached the end and are making their way back. He is only a few feet away from the start line. The cheering has stopped. The race is over but a few parents have noticed that our boy is still there, still moving a few centimetres at a time, still desperately trying to jump along. The sack is falling down. His face twists in discomfort and effort – the ache in my chest blooms.

The fact that my son is different, the fact he will always be set apart – it has never been more starkly obvious than in this moment. The other parents are staring now. There are whispers as they wonder why he cannot do it, what is wrong. I blink back tears. I won’t cry while they are watching.

We brace ourselves, fearing he will stop now and sob, or lash out. Surely he will fall apart? This is too much for him.

But he does not stop. He keeps going, tiny little jump after tiny little jump. I begin to shout – “Come on sweetheart! That’s it you can do it! You can do it, gorgeous boy! Keep going! Keep trying!”

And he does. Little jump after little jump – so slowly, so painstakingly. It is several minutes after the race ended now but he is over half way.

My gorgeous boy kept on going. Not just in the sack race but in all the others – the bean bag throwing, the ball-balancing, the football kicking. Even when he found it close to impossible, even when the other children finished minutes before him, even when he dropped the ball so many times – he picked it up, pulled up his sack, kicked the ball again and kept on going, every time. He finished every single race. And when the morning’s activities were finished, when the prizes were given out and he beamed with delight at his shiny gold medal and certificate for taking part, the ache in my chest transformed into pure exultation. The tears flowed freely then. It is a day that will live in my memory forever – so filled was it with ecstasy and despair.

It is difficult to explain to someone who doesn’t know my boy; to someone who isn’t the parent of a child with special needs. But my son showed just how much the taking part *is* the most important thing, how strength and bravery and character can be found in not winning.

And I could not have been more proud of him than if he had won every single race.