Monday, June 20, 2011

It's all about love...

We're at the beach this week, enjoying nature's OT clinic and taking on the odd zoo and theme park (as is Billy's wont).

While our holidays are definitely not what we see the 'average' family experiencing, they work for us, and we all love them. We visit the beach a lot, we see animals a lot, we see family as much as possible. We eat a lot of the same foods, we stay in the same hotels, we buy the same toys over and over.

What's interesting, is the effect these holidays have on Billy.

For sure, we are fortunate. Billy is a child who can cope with almost anything if he has his Mum and Dad close. He may not cope with it in the same way other kids do (I don't see many NT kids flapping, dancing, repeating TV shows and retreating into the world of favoured baby toys), but he definitely makes the most of the new.

All through his life, we notice gigantic leaps during and after holidays. Language leaps, cognitive leaps, behavioural leaps... hell, Billy will even eat new foods his grandmother gives him on holidays. In my mind, this alone is enough to call in the Vatican. It's like the relaxation, coupled with the security of Mummy and Daddy 24/7, added to the shock of the new, equals the permission to grow.

As he gets older, we see that growth in a very different way.

At two or three, it was all about the 'normal' moments. We counted the 'normal' approximations as the successes, and celebrated a day that had more normal than 'not'. We saw him take on new skills and abilities and we thought that meant the older, different ones were outmoded.

At four, five and six we saw his courage build, his flexibility improve and his determination settle at his very centre. He found a sense of humour, a set of passions and a love for achievement. We also began to see autism as normal, and the rest of it as a bonus.

Now, at seven, we are revelling in the last moments of childish freedom. We can see the eyes on him, both child eyes and adult eyes. We can see the acknowledgement in those eyes, when they realise there's something 'going on'. We see the divide in the owners of those eyes - some smile in recognition and acceptance, others step backwards lest the disabled boogies journey up their noses.

Billy cannot fully see those eyes yet. He is deep in the moment.

He can see the kids playing nearby, and he wants to play too. He does not notice their confused (or cruel) stares as his arms and face react involuntarily to the movement of other kids' games. He doesn't understand the meaning of the cruel words they mutter, and even if he did, they come too fast and in a soup of atmospheric sound. His processing skills deliver him a small mercy.

He is tall, but still child enough to be overwhelmed by the beauty of the holiday experience. He is bright, but still simple enough to be allowed to put his foot down in childish refusal. He is one step away from being expected to handle more than he can understand.

There have been moments over the last week where Billy has wrestled with the inappropriateness of his feelings, and lost his way trying to understand why things felt too hard. He has stared into the upcoming minutes, and freaked at the fact that he has no idea what's coming next. He has wrestled with the visit of a relative, knowing he wants to see them, but not knowing what their presence will bring (or what presents they will bring).

Twice on this holiday, Billy has burst into tears at the beauty of love. Once was during a viewing of Lion King 2, when two characters showed they loved each other in flashback. The other was when we found a giant love heart drawn on the beach and Billy was moved by the enormity of the sandy gesture.

It was both beautiful and heart-wrenching to watch. We were led to believe that our autistic child might never understand love. The doctors said he is likely to live his own life, without the need for others to buoy him up. We know, for sure, that this is a crock.

Again and again, we see that autism is not framed by the things a person cannot do. It is about the impediments that stop a person doing or expressing things. If we work on the impediments (external and internal), we enhance the possibility of achievement. If we re-evaluate our perception of achievement, we enhance the possibility of happiness. The hard part is understanding what can be worked on and what is immoveable.

Except, as I learned today, where leaping dolphins are involved. Am I the only one who can't hold back tears at the Sea World dolphin show? I'll be buggered if I understand what that's about.

I hope if we keep working on our communication skills (and maybe watch Lion King 2 together), Billy may be able to help me understand.


Jayne said...

What a beautiful wonderful post about your fabulous boy, Valerie xxxx

Di said...

Jeepers Valerie, I wish you would write daily. Love your posts! :)
You are right, as our kids get older, people become more aware of their 'oddities'!!
We all have to develop hippo hide (along with the fat butt... hahaha!).

Live, Love, laugh :)

Go Billy... you are a seriously cool kid!

Anonymous said...

I wish you could write daily too!
I LOVE reading your observations and wisdom about Billy..

Jenna said...

My name is Jenna and I came across your site. Billy is an amazing, courageous, strong, determined and an inspirational little boy. He is so special.

I was born with a rare life threatening disease and developmental delays. It is hard for me to get diagnosed, but my mom has always belived I had autsim or some form of it. I have obsessive behaviour, melt downs, Anxiety, problems reasoning, reapetive behavior, and dealing with change. I also have depression/bipolar.
I love it when people sign my guestbook.

Anonymous said...

I strongly believe that most doctors feel they are doing us a favour by preparing us for the worst, and hoping we are all pleasantly surprised.

Dana Meijler said...

as always Valerie your posts are so beautifully written and so poignant and they often mirror my own views of my daughter but are expressed with so much elegance. Reading your blog is like being surrounded with velvet. I wish I could express myself so beautifully.

And I am so glad that while vacations are full of surprises that Billy is enjoying his. Maya also grows in spurts during holidays with us.

Enjoy and a big hug.