Today is Billy’s 8th birthday. We are on the road from Phoenix to Disneyland (via The Living Desert in Palm Desert, cos it ain’t a good day in Billyworld without four legs, fins or fur).
We are on A Giant Adventure, having flown across the Pacific to California (from Sydney, Australia) and our autistic boy is taking it all like a champ.
In the past week, this child has flown for 14 hours (yes, 14 hours straight), seen five animal parks, bought five new plush animals (an ocelot, a fenec, a killer whale and two okapi), eaten a side order of bacon at any number of Denny’s/IHOPs and generally sucked up a bunch of stuff he shouldn’t even be able to contemplate. (Can you say Outlet Shopping?)
He woke up this morning, excited to be eight, concerned there would be no birthday cake (thank you Disneyland for pulling us out of that hole) and generally excited for a new chapter to the Adventure.
Despite the scripting, the endless crashing into soft things and the ever present ear protection, we have to remind ourselves he’s autistic. He’s supposed to be rigid, right? He’s supposed to love routine, and hate change. He’s supposed to… blah, blah, blah.
I know all kids are different, and all autistic kids are especially different but, seriously, he’s giving this whole holiday chaos theory a red hot go.
The other amazing thing about this trip is that I have been able to, and will be able to meet a bunch of women who have helped get this child to 8 years old in one piece. These are women I have met online, in the least creepy way possible – people like us – parents raising a child with special needs.
They have been in my life since Billy was just over one year old, when he lost his precocious language and started carrying the same green cup everywhere he went. They have listened, and answered and questioned and shared the highs and the lows. Online, they have felt like sisters for all this time.
Here’s the bizarre, post modern freaky part… so far, in person, they are just like sisters. Not in that, you-took-my-hairbrush kind of way. In a holy-crap-I trust-you-completely way.
I don’t want to jinx meetings that will take place in the near future, nor do I want to sound like a character in All My Children (handy, cos they’ve been cancelled, right?). However, I do want to somehow explain the oddly excellent ease that these women and I have found face to face. I mean, really… if you transferred this experience into another realm, it would be highly unusual. People who have one single thing in common, really, meet and feel an immediate bond. It’s the plot of a movie. An Anne Hathaway movie. Yet, I’m living it, and it’s a real life reminder of a couple of cool things (at least).
The first is that special needs in general, and autism in particular shifts your boundaries of ‘unusual’ around quite a bit. You spend a lot of time (or should I say, I spend a lot of time) in a principally NT world planning ways to explain our needs, decisions and peculiarities. Meeting other autism parents, especially ones that ‘know’ us already, there’s none of that backpedalling. Our kids somehow ‘get’ each other (and even if they don’t they don’t care much), and the adult starting point is absolute acceptance. That’s a really good feeling.
The other thing is something I’ve thought about, and probably mentioned before (my attention span prevents me from actually checking whether I am repeating myself). It’s the special needs chicken or egg question. Is there something that means excellent people get special needs children (beyond the platitudes), or does having a special needs child make you kind of excellent. I don’t mean Paris Hilton ‘That’s hot’ excellent, just open hearted, honest, positive excellent.
There are and will be many more things to report along this journey, but for now, I just want to say thanks. Thanks to America, thanks to the parents who share this road, thanks to Dennys who have good bacon and to IHOP for just being IHOP (are you listening, Australia? Pancakes. All kinds. All hours. It’s genius.)
This trip has given us all renewed faith. In a year when we had to take our fight for autism awareness as close to the courts as I ever want to get, we have been shown that the world really does get it. Our horizons have been broadened and our waistlines are following suit.
I mentioned IHOP, right?
Also, I want to say Happy Birthday to my boy. You have surprised, inspired and entertained us since you made your appearance. We love you to bits.
To anyone reading this, who is in the early years of a special needs journey, I hope you can feel the true and genuine happiness that Billy has brought to us. He is the best child, who shows me how to live my life, each and every moment.
Like this morning, when he informed me that ‘baby’ is out, and ‘buddy’ is in. Eight, huh?
No comments:
Post a Comment