Wednesday, June 16, 2010

It's all about the money...

The more confident we get about the possibilities for Billy, and really they are all about the freedom hippy school provides, the more the flipside also rears its ugly head.

It's all about money.

Any kind of change, any improvement, any significant opportunity is costly. Financially costly. I don't even want to start on the other costs (emotional, family stability, time... should I go on, or have I depressed you enough?)

I think about hippy school, and what it means to us. A place where Billy can learn and grow and understand himself, free of judgement and threats to his safety. OK, maybe not free of them, but definitely in an environment where those judgements and threats are dealt with openly, honestly and with humanistic consequences.

The downside. It costs. We are very fortunate to have family who help us pay the fees. If they didn't... we'd be homeschooling. And I know Billy would not be challenging his full potential if we do that.

I think about my friends with children severely impaired with autistic challenges. As much as I'm not a fan of ABA for us, these are children whose lives could be enhanced with intensive behavioural intervention. But they can't access ABA services.

Because it costs. So kids grow older lacking language, and cognition and life skills. Not reaching the potential so clearly within them.

And I think about Through My Eyes. It will pass 60 000 hits on YouTube soon. There are plans to release in the UK, and in the USA and it's all lovely and wonderful. and truly inspiring to have gained the reach we have.

But it costs. A lot of money. And we don't have that money. If we did we'd be paying our own kid's school fees. So even the freaking song can't reach it's potential.

I don't mean to be doing an 'oh poor me...', though I'm well aware how whiny I'm sounding right now.

We are fortunate beyond belief, in so many ways, and I am completely grateful for that. I have support in this game. Family, he-who-thinks-blogs-are-stupid, and from complete strangers. Those strangers - the parents who share this journey, give me incredible support that goes beyond anything money could buy. These people have shared their time, and experience and wisdom to guide me and others through the darkest of dark times.

I've made friends I'll have for life. I know that, for sure. And it adds to the confidence I have for Billy because I know that he'll grow up as a part of a virtual generation, linked across the world by their parents, their challenges and the internet.

The generosity of these people is what keeps us moving forward.

But I really do wish that the other kind of generosity wasn't necessary too. I wish that money wasn't an issue. So kids who need therapy could have it. So kids who need tailored, sensitive, inclusive education could have it. So people could share information and inspiration without needing to have the connections and salary of a Hollywood celebrity.

Whine-fest over. Resume normal transmission.

4 comments:

Ro said...

It's always the money or lack thereof *sigh*.

fiona2107 said...

I hear you!
I'm stressing as to what to do once the Fahcsia funding runs out.
It has been a God-send but it's really gonna hurt when it's gone.
I feel like I need to decide which child needs which therapy and dump the rest...

Lisa said...

There was/is a hippy school near us. Recommended even by Dreamer's pre-school teacher for him.

Hippy school + both parents working full-time and stressed vs local school and both parents working part-time to share home stuff.

Oh, and throw in two younger siblings (3 years old and 3 months old at the time), who would also need educating and (as it turned out) testing, therapy, medical interventions.

I can never forget a conversation I overheard at work many, many years ago, which effectively went "Oh, I couldn't possibly have more than one child - what with the school fees, computers and stuff they need".

It was such a foreign concept that anyone would make a decision about a child's life based on a presumed need for a particular amount of cash.

That's just me. I couldn't have not had kids just because I couldn't afford to give them everything. We muddle through, and give them what we have.

On a funding note: I can't help wonder what the cost comparison would be between 12 years of quality, individual therapy and education and 50-odd years of a disability pension.

Shall I stop now?

carriemumof2withasd said...

Money,money,money! I need MORE!

when the funding stops in a few months so will the therapy :( I will try to continue at home with what I have learnt.

I hope all goes well for you my dear I know its hard and I feel for you :)