Thursday, December 13, 2012

A Very Worthy Cause

Hello gentle readers! I promise I'll be back to my regular shenanigans tomorrow (it is There's a Book for That Friday after all, and I have a doozy for y'all tomorrow), but I wanted to take some time today to talk (well, write) about a cause that I find vitally important. Now, don't leave just yet, I'm not going to get preachy at ya, but this is serious stuff and there are very simple things you can do to help.

Sensory integration is a huge problem for most autistic people. What do I mean by that? Well, most of us have certain filters in place in our brains. The brain decides which sights, smells, sounds, and sensations that it's currently taking in are important and which are not and it allows us to consciously focus on only the important information we're taking in. We hear a friend talking but we're able to ignore the birds chirping outside the window. We can watch TV without also having to turn and look at each picture on the wall, or the light coming in through the blinds. We only feel the need to taste food and drink and not every rock, stick and leaf we come upon.

Okay, imagine that those filters were gone. You would suddenly be compelled to consider every single aspect of your environment at once. Your brain would no longer prioritize sensory information so you would hear every sound being made around you at once. The sound of your companion talking to you would compete for your attention with the sound of the person next to you in the coffeeshop typing on their laptop, the sound of the espresso machine running, the person across the way talking on their cell phone, chairs scraping across the floor as fellow patrons stood up, the sound of someone zipping up his coat, a dog barking down the street. You would perceive it all at once without being able to filter out the unimportant sounds. Can you imagine trying to follow a line of conversation under those circumstances? And it's not only the sounds competing for your attention. You would also have to look at everything around, smell every bad and good smell in the air, consider everything you touched. It would be completely exhausting.

The lack of filters is one component of sensory integration and processing problems. Most autistic people also experience their environment too intensely. Loud noises can be physically painful. Some smells others ignore are completely abhorrent. Bright lights can put some autistic folks in an almost trance-like state. And they live like this every single day, struggling to swim out from under the depths of sensations that are constantly washing over them to break the surface and be able to make connections and perform necessary tasks.

Not being autistic, I may not have described this exactly as it feels, but I have read accounts of sensory processing problems from autistic adults and what they have to say falls pretty much in line with what I've described.

Now, there are certain techniques that are marvelously helpful in integrating the senses and allowing people with sensory integration and processing problems to focus on only important stimuli. You may have seen the Temple Grandin HBO movie in which she builds herself a "squeeze machine". Tight squeezes help some folks, as does swinging on a swing, holding vibrating objects, jumping or twirling, sitting in a pit of objects like beans, rice, or balls, etc. I have seen the evidence of this myself at Ry's occupational therapy appointments and at home. After being squeezed very tightly in a squeeze machine, he is calmer and more focused. He engages in less self-stimulatory behavior and is able to pay attention and follow directions. We are very blessed that he now receives occupational therapy through a school with a wonderful sensory clinic that has many tools to help our boy feel calmer and more secure and to focus on his schoolwork. Not everyone is so lucky.

And here we come to the real story. This is the story of my friend Kat, her husband James and their son James who is affectionately known as Bean. They live in my awesome home state of California and Bean is 4 years old just like Ry and also autistic just like Ry. Unlike Ry, however, his school does not have a sensory clinic. It's been a tough road for Kat and her husband James. They tried for several years to have a child and suffered a miscarriage and a stillbirth. Finally they were blessed with a beautiful son. As he grew though, Kat was convinced something was a bit off about Bean, but her concerns were ignored over and over again by his doctors. Finally, when Bean was 3 they got the news that he was autistic. I can attest to the fact that it's very hard news to hear at first. Your entire worldview, everything you expected or dreamt of for your child changes. It's a painful period of guilt, confusion, and shifting priorities. Luckily, though, they were able to enroll Bean in a great special ed preschool program at Rolling Ridge Elementary in Chino Hills, CA. Bean's teacher has been a great source of support for Kat and James as they learn the ropes of autism and Bean is now communicating his needs well and potty trained (a huge feat, let me tell you).

Unfortunately, Rolling Ridge Elementary is suffering under the same budget constraints as the rest of California. There have been massive cuts to the special education budget and funds that were supposed to go to special ed are being diverted to general education purposes just to keep the school running. It's a common problem, but I put it to you that it is incredibly unfair that the students who need the most help are having their resources reduced the most. Kat is a very generous and involved mother and has been donating items, money, and time to the school, but she cannot donate on her own what they really need and that's a sensory clinic. They need $20,000 to buy the necessary equipment and the school simply doesn't have it and aren't likely to get it any time soon. So, Kat, being the go-getter that she is, has taken it upon herself to raise the money herself. She's raised money in the past and given it to the school, but it was put into the general ed fund and Bean's classroom never saw a penny of it. So, she has started a private fundraiser and every single cent of the proceeds will go directly to constructing a sensory clinic for Bean's school.

Now, why should you care whether some kid you don't know is getting his tight squeezes or not? Because this isn't just about Bean. Autism levels are at 1 in 88 births now and rapidly climbing. We are raising a generation of children with no filters between themselves and their environments. These are the people who will be leading our nation, who will be our teachers, doctors, politicians, mothers, fathers, but they're going to need a lot of help to get there. We owe it to them and to their non-autistic peers to do whatever we can to accommodate our world to them as they struggle desperately through hours and hours of therapy and special ed to accommodate themselves to the world. In the grand scheme of things, a sensory clinic is such a small thing to give them, and yet it would mean so much, not only to Bean but to all of the other autistic children who will pass through Rolling Ridge Elementary in the years to come.

This cause is so close to my heart that it's the only charity we're donating to this holiday season. Y'all know things are tighter than tight for us, but I made sure there was room in the budget for Bean and his sensory clinic. I understand if you have other causes that are more personally meaningful for you, but I ask that even if you cannot donate, please re-post this blog or share Bean's link. It's such a little thing to do. Don't worry about annoying your friends, it's a small price to pay to get this information out there and if they're annoyed by a perfectly reasonable request for autistic children, well, then they're class A jerks. As Kat says, "We only need 2000 people to donate $10." If you don't have $10, please give Bean the gift of sharing his story with others.

The link is at the bottom of the page, and seriously, how cute is he?




Thanks for reading, everybody, and I'll be back at the funny tomorrow!

http://www.gofundme.com/1j26dc

8 comments:

  1. A worthy cause, indeed! I donated a little, and would love for you to post a reminder about this cause in February when my budget isn't groaning from Holiday excess.

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    1. Thank you so much for myself and for Bean!

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  2. I linked your blog post to mine. It's a great cause.
    http://nzillaloveableanddestructive.blogspot.com/2012/12/autism-n-zilla-and-james.html

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  3. Words cannot describe how I feel right now.....Thank you Meg and everyone reading this, reposting it, donating, and sharing. My heart is just bursting with joy and knowing that I am not walking this path alone is the best Christmas gift I have ever received. Merry Christmas to all.

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    1. Got your back, lady ;). Seriously, Bean and his classmates need this and it would be terrible of me not to help in the small ways I can.

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  4. Amazing. I will definitely share this with everyone.

    (Did you know that I taught reading comprehension to a lot of autistic students? They are some SMART cookies. Even if they can't eat cookies.)

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    1. I didn't know that Chrissy! I totally agree! And LOL about the cookies! As long as they're gluten-free and dairy-free and the texture is unobjectionable ;).

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