Thursday, January 31, 2008

Starbucks raising autism awareness

I know a lot of people who like to complain about Starbucks (or any big company) taking over the world, but I also know a lot of people who drink Starbucks coffee!

A couple of days ago our friend paused to read "The Way I See It" quoted on her cup, and was pleasantly surprised to see they were quoting Bob Wright (former CEO of NBC) promoting autism awareness and early intervention.

The Way I See It #264: Every 20 mintues – less time than it will take you to drink your coffee – another child is diagnosed with autism. It's much more common than people think, with one out of every 150 children diagnosed. Learn the early warning signs of autism, and if you're concerned about your child's development, talk to your doctor. Early intervention could make a big difference in your child's future.



We talk about awareness a lot, and as much as we like to think that every individual counts – some people count more than others. People with high profile lives or influential positions have the ability to generate more awareness than the average person or family. Bob Wright probably didn't know much about autism before his grandchild was diagnosed (just my guess), but shortly thereafter we saw Autism Awareness Week on NBC! Then he founded Autism Speaks (www.autismspeaks.org), which has become one of the major players in the autism world and funds millions of dollars worth of research and other charities.

It's nice to see support where you didn't expect it, so Kudos to Starbucks. Could they do more? Of course – we all could. But they're doing something, and not every company out there can say that.

Wednesday, January 30, 2008

Interviewing Hab workers. Again.

The trouble with Hab (habilitation) workers is that once you have a good one, you get spoiled. And your expectations get raised for everyone else. The difference between a good Hab worker and an average one is enormous.

A good one becomes part of your team; an indispensible member of your family. Somebody whom you trust, respect, and rely on. Someone you invite to birthday parties and family outings. We've even known friends who invite their hab workers to vacation with them! And the whole time, you know your little one is getting productive use of every minute he spends with them.

We've found average hab workers to be a huge drain on our resources. They work OK with Calvin, but they don't get the most out of him. They're generally reliable, but they might show up late or call in sick a little too often. We feel like they're important, but then we can't quite depend on them and end up looking over their shoulder half the time. Eventually we'll realize that they've become more stressful than they're worth.

What about a bad hab worker, you ask? Those are easy – you can figure it out pretty quickly and get them out the door!

We've got 2 pretty strong hab workers right now, but they're both going to be transitioning to bigger and better things before too long (ie: graduating OT school and moving away.) So we've started looking for somebody new to step in and start learning the ropes...

We just had an interview with a candidate from a new provider agency (new to us, anyway). The girl we had spoken with at the agency was great, so we were hoping for good things. Unfortunately, not this time.. He showed up to the interview dressed like he was ready to hit the clubs – fancy shirt, boots, hat, chains. His background was in juvenile delinquents, not special needs. When Calvin came over to check him out, he didn't know what to do – it was like a deer in headlights.

Well, at least it was an easy decision...

Monday, January 28, 2008

Researchers implicate specific gene linked with autism

Earlier this month, the American Journal of Human Genetics published findings that the results of a previous study were duplicated not just once, but 3 times – in 3 different locations by 3 different research teams. Researches from Yale University, UCLA, and Johns Hopkins University have all validated the previous study linking a specific gene to autistic behaviors.

Dr. Dietrich Stephan, Director of the Neurogenomics Division at TGen (Translational Genomics Research Institute): "Autism is a perplexing disease whose cause remains unexplained. It has long been suggested that environmental factors, linked with genetics, play a role in causing the disorder. As recently as last week, researchers in California published a study that found no proof linking autism with a mercury-based preservative found in childhood vaccines. While there are no clear-cut answers, researchers are one step closer to understanding autism's genetic cause."

What does this mean for the future?

It's too early to tell for sure. TGen is currently collaborating with SARRC to apply these findings in children in Arizona who have been diagnosed with autism. Who knows how much further research will take us? Maybe someday they'll be able to:

  • Screen for this particular gene, giving parents-to-be earlier warning. (or giving broken-gene carriers other options entirely)


  • Discover what is causing the gene to malfunction.


  • Learn how to repair a broken gene. (maybe grafting from a healthy gene, or from a parent's or sibling's gene.)


  • Develop or recommend a supplement which makes the broken gene function more normally.


I'm dreaming about the possibilities for the future...

    Friday, January 25, 2008

    Hiking evens the playing field

    One of the things I find challenging as a parent is discovering things we can do together, as a family, where everyone gets a full enjoyment out of the activity. Some of the things that Calvin loves to do are quite boring to Jonas, and vice versa. Sometimes we have an activity that both kids will participate in, but at different levels – such as sports. Jonas wants to play the games as fast as possible (Calvin doesn't process all the variables fast enough to keep up), while Calvin likes to slow the game down enough to participate (Jonas gets bored.) It's not easy, but we keep trying.

    Hiking, on the other hand, has become a great activity for us. And since there are lots of trails in and around Phoenix, we have plenty of opportunities to hike and explore. Jonas wants to hike fast, and wants to be the leader. Calvin doesn't care about who leads. But after a few minutes, Jonas' little legs get tired, and we all get to hike together. On the way down it's a different story entirely – Calvin rolls downhill like a bowling ball (I have to keep up to make sure he doesn't get out of control.), and Jonas is much more cautious as he works his way down the trail. It's great to have something that we can do as a family, and it's great to have something where Calvin gets to "win"!

    Pictures taken over Christmas break at Squaw Peak (Piestewa Peak) Recreation Area in Phoenix, Arizona.








    Wednesday, January 23, 2008

    Space to run

    The flu-bug hit our house last week, and the kids mixed in a little Strep Throat for good measure. Somehow I avoided it (knock on wood), but Cheryl & the kids looked and felt like death warmed over. It was not a fun place to be. By Saturday Calvin felt a lot better, and by Sunday he was not only back to full speed, but had "cabin fever" and did not want to sit around the house anymore.

    We could go for a walk, we could play in the backyard, we could go shopping – all the usual choices. But I wanted to do something different. We decided to go take a walk around ASU West (Arizona State University, West Campus). What a great idea this turned out to be!



    We had the whole campus to ourselves, since it was Sunday and there were few students around. Tons of wide open spaces, stairs, hills, fountains, corridors, grass fields. We were able to burn off a lot of energy, which was good for both of us!

    I'm not suggesting that a college campus become your primary playground, but if you have a little one who likes to bolt in public places, or who sometimes just can't get enough running and bouncing... This was a safe and effective place to do it. We had a great time playing and exploring together.

    Monday, January 21, 2008

    FDA Warns cold medicines too risky for children

    The Associated Press is reporting the FDA has issued a warning for over the counter medications for children. It's been in discussion for a few months, but the FDA has now made it official. They are warning against giving over the counter medications to children under the age of 2, citing "serious and potentially life-threatening side effects can occur". Even more interesting, though, is that they may widen the warning to include children under the age of 6, and possibly even children under the age of 12.

    I know we've come across more than our fare share of side effects, both with over the counter and prescription medicines. It seems like Calvin's system is just more sensitive and responds to much smaller than recommended doses. This is also true for many kids on the autism spectrum.

    Maybe this is yet another realization that some of the things science creates to make our lives better may come with unintended consequences..

    Wednesday, January 9, 2008

    Is your home Fort Knox?

    Everybody who comes over to our house makes a wise crack about Fort Knox. Even our family members have something to say. And why shouldn't they? After all, we've got multiple chains and locks on every door, pantry, closet, and refrigerator in site (not to mention a security system to monitor open doors)! We generally give the same response – "it's better to be safe than sorry."

    lock and chains

    On Christmas Eve this year, we almost had a get-away, and I think it finally sunk in. My brother-in-law went outside to get something from the car. He was back in less than 60 seconds. But as he approached the door, something caught his eye; Calvin had followed him out and was hanging out in the neighbor's yard!

    Yes, it can happen that fast. And we've found large group gatherings tend to be the most likely times for someone to let their guard down, as if everyone assumes someone else has a visual on Calvin, and before you know it, no one does.

    If your house needs to be Fort Knox for your little angel's safety, make it Fort Knox – and don't give a care in the world about what anyone else has to say!