Wednesday, April 29, 2009

Sibling Day

Yesterday was National Sibling Day, and Calvin was asked in school what he thought about his brother.

I have dear little brother. He is the truest real friend I have. Hope the way we are stays that way. Good having fun with him. He finds me hilarious. His name is Jonas. Having him as a brother has been great.

I couldn't ask for any more between the two of them, and I couldn't have said it any better..

Friday, April 24, 2009

Teenager with autism arrested

Here's another thing we parents worry about that other parents never have to consider..

What happens when your child functions well enough to be out in public independently, but not quite well enough to react to out-of-the-ordinary situations?

Here is an interesting story out of Canada, where an 18-year old boy with autism was arrested for public drunkeness because he did not respond appropriately when police addressed him.

Now, in this particular case, I don't think the police were too far out of line. Thursday night, after midnight, a teenager is walking in the road and doesn't respond to the officers' request that he move to the sidewalk. He then gets belligerent and resists arrest.

The article is a good read. And although the comments are overwhelmingly slanted against the police, I find myself agreening with Comment #6 (Gerald from Belleville) more than the others; at some point the police have a job to do, with protecting the public and enforcing the laws being of primary importance.

Seems to me like this was the culmination of a series of events that could have been prevented...

Maybe our children need to be prepped for how to react if a police officer talks to them..

Maybe they carry a note to give the police officer explaining the situation and asking to call mom/dad..

Maybe they shouldn't be out alone after midnight..

We want to foster independence and protect them at the same time. No different from our NT children, it's just harder!

Wednesday, April 15, 2009

study shows environmental toxins increase probability of autism

Children living near Superfund sites are more likely to be autistic.

Earlier this week the Environmental Health News reported on a completed study in Minnesota, comparing the rates of autistic children enrolled in schools.

The study compared autism rates among public school children in 46 school districts located within 10 miles of one or more Superfund sites to rates among children within 288 school districts that did not have a site within 10 miles.

Rates of the disorder were one and a half times higher in the districts within 10 miles of the toxic sites. That translates into 1 child in 92 in districts closer to the sites compared to 1 child in 132 in the districts farther away. Schools within a 20-mile radius of Superfund sites had similar autism trends as the schools with 10 miles of the sites.

If you still think heavy metals (mercury, lead, etc.) and other toxins don't matter, it's time to pull your head out of the sand. What we put into our bodies, and into our kids' bodies, directly or indirectly, has an effect on how our bodies perform.

Monday, April 13, 2009

You don't understand

We've been fortunate in a lot of ways. Calvin has made tremendous progress over the last 5 years, so much so that we sometimes take it for granted &/or forget where we came from.

This weekend was a slap in the face reminder. Calvin struggled, a lot. Less control of his body, less direction, more crying (uncontrollably and unconsolably), less sleep, more yelling & whining, more getting into trouble... Overall it was a tough weekend. And of course this was capped off by having family over for Easter..

Family members out there - grandparents, aunts, uncles, brothers, sisters, cousins, good friends.. I hate to say it, but you don't understand. You haven't put a decade of your life into this - every thought, every ounce of emotional & physical strength and energy. You haven't been screamed at and whined at for hours on end, to the point where you don't have a thread of patience left. You haven't poured extra energy on top of everything else hoping (and oftentimes failing) to give support to your spouse & other child(ren).

You love us, and you love Calvin, unconditionally. We know that and we appreciate that (and we love you back). We also know that we, and Calvin, couldn't have a better, more supportive family to lean on. But there are some things only the parents out there can understand...

Parents out there - sometimes your family & friends aren't enough, and you can only get the support you need from another parent. (and sometimes you just need to get out of the house for a couple of hours!)

Friday, April 10, 2009

Calvin Writes

April is Autism Awarerness Month, and Calvin was asked to write about that at school.

Dena (teacher): "It's Autism Awareness Month. What would you like people to know?"

I would like people to know that autism is so hard to deal with. You have to hope in yourself. Under the real good look hope is hard to find. My body is not home that is the problem. My brain is my home that is where you can find me for the best true me. No one understands my body. The real me is in control in thought. My Calvin is hoping to be free. Most Dena can help to be best teacher to me.


Thursday, April 9, 2009

Poppin Joes small business success story

Poppin' Joe's Kettle Korn.

Joe Steffi is a 23 year old young man with autism, Down Syndrome, and is non-verbal. He's also the owner-operator of Poppin' Joe's Kettle Korn, a thriving small business with a goal of $100,000 in sales.

We talk often about assuming competence, and about how smart Calvin is. But this is a truely inspiring story. It helps me keep faith in what is possible.

Read the whole story published by US News and World Report on 4/2/09.

Tuesday, April 7, 2009

Up In Smoke

Today I was eating lunch in my car while parked in a parking lot (a common occurrence when you pretty much work & live out of your car!) A couple of women caught my eye as they approached the car in front of me - mostly because one of them was about 9.5 months pregnant! She looked miserable, and I was running through the "how to deliver a baby" mental checklist just in case...

Anyway, they both got into the car (the expectant mother was the passenger), and got all their stuff organized and ready to go.

I then watched in horror as the driver pulled out a cigarette, lit it, and backed out of the parking space.

All I could think was, Cheryl did everything perfectly by the book while she was pregnant. Yet that baby will probably be just fine...