Thursday, October 6, 2011

i have iEverything iReady...

At the end of this month, we are getting in an aeroplane and flying across the Pacific for 14 hours. Trapped in an airtight tube potentially containing babies. We may be nuts, but San Diego Zoo (Billy's spiritual home, in his mind) lies at the end of that trip (give or take an extra bit of road tripping) and so… we are doing it.

We are not just taking this trip because Billy knows every inch of San Diego Zoo thanks to Google Earth. Though that is definitely a bonus. We are taking this trip because we can.

It’s been a long road to get here and we have a much longer road ahead. At the end of this month, we take a pause, and have a holiday.

Billy is almost eight. In fact he will turn eight at Disneyland (we have been told not to disclose this to Disney staff lest a legion of suited characters and their minders insist on singing ‘Happy Birthday’ in his face, repeatedly, all day). He is also autistic.

We are fortunate in so many ways because Billy has developed a legion of helpful skills.

He has language (some of it hilariously idiosyncratic, a lot of it direct from TV, a bit annoyingly memorised from things we have said). In fact today, he has revealed to me that he has memorised the entire Smurfs movie. Yup. All of it. Sound effects, voices, music. Everything. It was hard enough in the cinema… now I’m hearing it in my house as well.

Billy is also incredibly loving. He has an astonishing memory, a gift for spelling/reading and a wicked sense of humour.

He also has debilitating hyperacusis, severe sensory processing disorder, chronic constipation and reflux, and some bizarre as yet unnamed auto-immune related thing that makes him react very badly to some medications.

We, like everyone here, have spent our parenting lives learning and accommodating and researching and crying and tolerating and advocating and experimenting and begging and trying very hard not to punch people. There are many, many good moments and there have been many deep lows.

There have been many days when we have not felt good about leaving the house. There have been many can’ts, won’ts, don’ts and mustn’ts. We’ve hugged him through horrific hospital stays and we’ve cried with him when he’s been hideously misunderstood. We have worked on aims and goals and outcomes and small, manageable steps. A lot. Over and over. The goalposts don’t go away once you’ve kicked the ball through, they just move to a new spot.

Approaching his 8th birthday, we feel ready to take a giant leap into the great beyond. Or at least into a long haul aeroplane.

And here is where I must thank the recently departed Steve Jobs, and all those on his peofessional journey.

Our carry on luggage may as well have an Apple logo on it. It will contain an iEverything. Phone, Pad, Pod and a MacBook Pro for all of us. We have begun loading these devices with all sorts of distractions. We have attached these devices to various prototype noise cancelling headphones. We fantasise about these devices being in the hands of the adults while the child gently sleeps or happily engages himself.

We can dream, right?

Actually, you know what? We can. And here’s why I say that with something approaching confidence.

This year has been tough for us, but in the toughness we have discovered something very positive. That something is this…

If we create circumstances where our child is not feeling threatened, overwhelmed or exhausted, he is incredibly capable.

Things that threaten, overwhelm or exhaust him are many but include lots of noise, lots of kids, lots of social activity, lots of spoken language and a distinct lack of escape clauses. AKA - school. By choosing to educate him at home (a choice I totally accept would not work for everyone), he finds the space to take on academic work at an age appropriate level.

I’m working on that experience translating to our adventure 30 000 miles above the Pacific.

I so want him to have a good flight. I so want us to have a good flight. I sooooooooo want those around us to have a good flight, and if ‘those around us’ includes a person under 3 years old (give or take) then we need all the big guns we can get (bad phrase for an aviation adventure)… we need all apple products we can get.

Once we are on the ground, and past the jet lag, I’m thinking we will be OK. As long as he’s with us, he’s a fairly happy camper. Also as long as there are French fries, carrot sticks and water, he’s all good. Add giant pandas and cheetahs and nirvana is close.

I feel slightly less confident about myself and the flight, to be honest. Being an Irish, ex-Catholic migrant, I have a close relationship with the worst case scenario. I will need some assistance to banish thoughts of deep-vein thrombosis, terrorists and crashes from my mind.

Thankfully, I’ll have a legion of branded electronica, and no excuse not to have a drink or two.

 

 

Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.

4 comments:

  1. you are amazing
    I love this line
    "f we create circumstances where our child is not feeling threatened, overwhelmed or exhausted, he is incredibly capable"

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  2. Thanks so much for sharing your thoughts and a little window into your journey. I have to second the other comment about creating an envt in which our kids can thrive and be comfortable and safe. Though this probably applies to all kids as I think our two 2 kids that do not have special needs - it requires so much thought/effort/attention to create that space for our kids with special needs. But it is so worth it to see them explore, create, engage, and just be ... not just reacting to the envt around them. Very best wishes for a safe journey! I'm sure it will be a wonderful trip. (Oh - and I can absolutely connect with the memorization of the smurf movie - we have that in spades ... along with the words to every Lego Ninjago web video ever made.) :-)

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  3. Best of luck! Can't wait to read the follow-up post to your adventure. Happy birthday, Billy!!!

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