Shh...Mum is Thinking

Friday, May 26, 2006

Choices, or...You Want Fries With That?

More Perseveration on the Autism Speaks Video.

I can’t get this video off my mind. A few days ago I had my say about the worst of what it presents and avoided the little niggly bits that were bothering me. Now seems like a good time to get the nitpicky stuff that’s bugging me off my chest.

Some of the difficulties touched on by the video are common problems most parents of autistic children have to deal with. Fair enough. I’d like to see more attention paid to the negative reactions we and our children have to endure in dealing with the public, but that really goes across the board for families dealing with many disabilities and neurological differences, not just autism. It would be nice to see more information presented to the public that calls for an increase in understanding and tolerance towards autistic and disabled people in general, children and adults alike. I’d like to see a greater understanding and acceptance especially in schools, both by students and teachers. Our children have a lot to offer and everyone can benefit from increased tolerance.

I don’t think anyone would argue with that.

More support is needed to get our kids into higher education and more work is needed to ensure our ability to perform in the workplace.

These are things we all need to be concerned about, goals we can all agree to work towards together. Things that Autism Speaks SHOULD be talking about.

The additional parts of the video that are really eating at me are the misrepresentation of what is ‘necessary’ for our children and the level of stress that creates on families. Many of the problems discussed here are NOT common to all families dealing with autism, they are problems associated with the choices made by SOME. I keep seeing astronomical figures presented about the cost of raising an autistic child, and I have to tell you, I simply don’t get it! My child doesn’t cost any more to raise than any other child, in fact, since I’m home schooling him, he costs less. I can back that up, btw. It’s the simple truth. I have a habit of checking stuff like that.

I would imagine most ‘parents of’ would never have to complain about being $50,000 in debt because we ‘had to create this environment’, the room full of (probably overpriced therapeutic) TOYS we’re shown in this film. Honestly, my eyes almost popped out of my head when one mother waved her hand towards that room, that supposedly ‘therapeutic environment’. Holy guacamole, batman, that’s a lot of TOYS!

My kids indoor toys, combined, fill exactly two plastic stacking bins each with three drawers. It seems like a lot to me, especially when it’s distributed evenly across the floor of my house. But why on earth are we expected to think it’s necessary to stock rooms full of over priced fripperies just because our kids are autistic? Filling an enormous room full of expensive toys is a CHOICE. That’s not a necessity. I tend to think a cup and a bowl of water to splash in for a little one or a spoon to dig holes in the garden is more therapeutic anyway. Balls to kick. Books. Paper to make into airplanes. Blankets to wrap up nice and snug or an office chair to spin in together….effective, cheap, and they’re definitely therapeutic. In my opinion basic open-ended activities and materials are more enriching to a child than any hunk of plastic, anyway. Oh, except Legos. Those are a necessity, ha.

Medical therapies that are not medically necessary, vitamins, supplements, expensive extra medical procedures that are mentioned by most of the parents here, again, are usually a choice only when one chooses to subscribe to a school of thought for therapy or biomedical interventions that require them. Perhaps a parent who is buying into something like that considers these necessities, but honestly, are they? I don’t want to put someone down for the choice they make, but in the end that’s exactly what it is. A choice. Not a choice shared by all parents of autistic children, not a necessary expense for an autistic child.

The level of stress these people are complaining about has a lot to do with the direct result of the burden these choices create on their time, energy and finances. Ok, you’re stressed because you have to write down all your child’s behaviours. That’s a choice. You have to transport your kids to a constant round of therapies? Is it really necessary? Somehow I doubt these people are talking about your basic OT, speech and PT, we’ve done those and it wasn’t the ‘constant round’ of therapies these mums are complaining about.

We also did that initial round of checkups to make sure there were no further medical difficulties for my son. The genetic testing, MRI’s etc, were all finished within a couple of months, what’s with this constant round of doctors these mums are complaining about? Unless there are medical problems in addition to autism, why are these people complaining about constant rounds of doctors visits?

I have a feeling that is, again, more to do with choice than necessity. Biomedical interventions, especially, seem to be particularly stressful from what I’ve read, both in the expense and in time and extra effort. Again, that is a choice, and certainly not the choice I see most family’s making.

I can’t understand why these problems are presented as something that is shared by all autism families. It’s simply not true.

I’m lucky. I can *choose* not to buy into the misery dished out by this film because I have enough experience now to know better and the luck to have avoided these (ok, to me they seem like fads) when we were vulnerable. Those who are new to autism don’t have that experience, don’t know the more practical side of these issues, and are likely to be scared out of their wits watching this. And those who have no experience at all with autism will see this and look at us with that pathetic expression of pity I’ve come to hate so much--and darn, it I’m proud of my kid! I don’t want anyone’s pity!

I once saw a tee shirt I liked a lot; I think it’s apt to quote the words it had here, since it expresses exactly how I’ve come to feel:

"Piss on Pity"

My kid deserves better.


At 10:37 AM, May 26, 2006, Blogger Do'C said...

Great Post! :-)

"...what’s with this constant round of doctors these mums are complaining about?"

Don't miss NotMercury's look at this and his reference to the "biomed treadmill".

(Shh...Mum, you may want to turn on "Word Verification" on blogspot to reduce the inevitiable comment spam).

At 11:01 AM, May 26, 2006, Blogger ballastexistenz said...

The fact that the financial problems and stress were largely self-inflicted, was something I noticed strongly while watching the video.

Said people would not, say, sell their nice suburban houses and move to a smaller place in a different neighborhood that charges less, so they'd be less in debt, would they?

I simply don't trust the notion of the "financial sacrifices" of people who have all that expensive crap sitting around in such quantity while claiming that it's necessary.

Very few belongings, even very few of my belongings (and I am not anything close to wealthy), are truly necessary.

If you don't spend all your time and energy panicking about your children and pitying yourself, you'll have more energy to do things that matter, and you'll be much less stressed even in much more stressful situations.

If you don't spend all your money on unnecessary things (or on unnecessarily expensive versions of necessary things, for that matter), you will have more money for the necessary things.

In a way, one thing all the parents on the video were, was terribly inefficient.

At 11:02 AM, May 26, 2006, Blogger ballastexistenz said...

Just remembered an appropriate Tolkien quote, "He who cannot cast away a treasure at need is in fetters."

At 11:39 AM, May 26, 2006, Anonymous Camille said...

The woman who whined about having a hole in her ceiling because she had to buy a gajillion toys and floor to celiing, wall to wall storage systems to hold them all... I looked at that special room and thought, "sensory overload." Even visually busy classrooms aren't that packed with STUFF. They should have some plain white walls and clean areas to rest one's eyes, in my opinion. I can't imagine the need for that much STUFF. It's insane, especially if they bought any of it after the roof started leaking.

Maybe they just really want to be martyrs.

I can't justify what I"m paying per year for tuition, how in the world could I justify paying much more for teaching a toddler??? They don't need PhD professors, they are paying snot-nosed young woman and men, usually with high-school dipolomas or a few college credits in psych or human development to run these kids, dog training style, through hoops. It's pathetic.

At 12:49 PM, May 26, 2006, Blogger r.b. said...

Common sense that's not so common. Lucky for your kids!

At 2:06 PM, May 26, 2006, Anonymous Bonnie Ventura said...

You are so right. It's barefaced robbery, all those sales pitches for new and expensive ways to "recover" children before the clock strikes midnight and they turn into pumpkins.

Kids need books, crayons, construction paper, and plenty of time to run around outside and pick the dandelions.

At 5:56 PM, May 26, 2006, Blogger Mum is Thinking said...

Thanks for you comments :)

DofC,thanks for the tip, I'll be sure to read that :) And turn on verification, oops, I forgot! I'm such a noobie :-/

Ballastexistenz, I think self inflicted is a good way to put it.

It's not fair to saddle us all with the fall out of the choices that are made by just a few, Autism Speaks needs to remember that.

If a few people are using a therapy that requires flying a child across the country twice a week, for instance, it wouldn't be fair to claim we're all stressed because of the cost of plane tickets and miserable from jet lag. *crosses eyes* Gack.

There does seem to be an element of 'pity poor me' that is really only applicable to families who are on the fast track, families who are of higher than average income, families who are more priviledged than average. I didn't really want to get into the 'class' distinction, but it reminds me of some well off families I know who push their NT children into multiple after school activities, supposedly to enrich their lives, but the kids end up pushed to the limit and exhausted, and misses out on the joy of just being a kid.

If a parent wants to fast track an autistic kid into 'being normal', there is a lot more chance of overloading them, and also taking up time with therapies when they should be having down time to relax and explore the world.

It IS pitiful, but not in the way Autism Speaks want us to think it is.

And it also doesn't represent the majority of parents. Or kids. Or situations. Autism Speaks claims to represent all of us, but the average family is not in this video.

Camille, I was looking at the Behavioural school they have in Raleigh, NC, wondering if that was where Katie's family had sent her. The prices were THROUGH THE ROOF, and I was really upset to see that was for STUDENTS to work with the kids. It was unbelievable! I don't know how on earth they can justify charging that from families while getting free 'hands on' experience for their students (who are probably also paying an arm and a leg to participate) to learn from. It's sickening.

Oh, and I don't know if that's where Katie went to school, just was curious and found it while looking.

At 6:52 PM, May 26, 2006, Blogger ballastexistenz said...

There does seem to be an element of 'pity poor me' that is really only applicable to families who are on the fast track, families who are of higher than average income, families who are more priviledged than average. I didn't really want to get into the 'class' distinction, but it reminds me of some well off families I know who push their NT children into multiple after school activities, supposedly to enrich their lives, but the kids end up pushed to the limit and exhausted, and misses out on the joy of just being a kid.

I actually think that the increase in that mentality (and there has been a huge increase in it, especially among the middle class, even since I was a kid) is behind much of the massive increase in "autism as total tragedy" stuff. Think of how someone who would have been going to do that to their non-autistic kid, would react when handed a kid unlikely to be able to fulfill such a demanding life.

At 6:55 PM, May 26, 2006, Blogger ballastexistenz said...

Also, was that the video where the mother said "We're sending my child to Harvard... every single year"?

I remember being shocked that anyone would have the money to do that, debt or no debt. I grew up in a comfortable middle-class family and that still would have been impossible.

At 7:34 PM, May 26, 2006, Blogger Mum is Thinking said...

For Camille, just as a fyi aside, the address to the program I was talking about:

Have a look at the fees :-O Whoa!

Ballastexistenz, yes, that's the same video. I wonder what she was talking about? They didn't elaborate.

I consider our family middle class, actually, though I couldn't say that's always been the case. I guess there's more to it than a simple 'class' distinction.

But, yes, that fast track mind set has become more and more common the last few years. I hope that's a temporary trend, it seems to be self perpetuating at the moment. IMHO that mindset doesn't mix well with raising autistic kids. It exhausts me just to listen to the schedule some people have their kids on. DId you notice the news that listed Katie McCarron's daily schedule? Morning school, afternoon school, time with a tutor after that. At three :-( Bless her dear little heart, that's so sad.

It's just crazy what we're being told is necessary for our kids. Seems like a lot of this is doing the kids and families a lot more harm than good. I hope people will come to their senses about this stuff, seems like at the moment we're targets for people who want to turn a quick buck and really don't give a damn about these kids at all.

At 11:54 AM, May 27, 2006, Blogger ballastexistenz said...

I don't think class is the only factor, but looking at various trends, it seems to be a large factor in that attitude. (At least, on where that attitude spreads the most.)


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