HappyChucks   For Families Navigating the Autism Waters

I hate to admit it, but I've got too many irons in the fire right now, and something's gotta give. I've been spending a lot of time building my business (www.ButterHomes.com); I've put a lot of time and energy into building a fundraising program for Neurologic Music Therapy Services of Arizona (www.nmtsa.org) – an ongoing effort; I've been building a new company from the ground up (www.8DollarFarming.com/blog); and I've been enjoying spending time with my family.

When I look at the results, it's obvious that this blog is the piece that's being neglected. My personal opinion is that a blog which isn't updated regularly can't be very good – it becomes more of a half-assed effort than anything else!

This blog is something I really enjoy – it helps me to consciously think about what's going on in Calvin's life and the things I can do to help him. I've also met some great people & shared some great stories, and that was just in the short time I've been writing here.

Hopefully the day will come when I can give this blog the attention it deserves, including at least one new post per week. But until then I'm going to let this site take a little rest – after all, winter's almost here...

Another year, and another Disneyland vacation is in the books. This is one of those trips we really look forward to each year. The boys both LOVE it, and seeing them smile for 2 or 3 days straight is a joy. It's also fun to watch them grow, both physically and emotionally, from year to year. Rides that were too scary last year are lots of fun now, and rides that they could only dream about last year (due to height requirements) are fair game today.

This is also the hardest-working, most nerve-racking thing we do each year. From the minute we wake up, we're "on". High energy, eyeballs on the kids at all times, constant communication out of fear that each of us will think the other is "on duty". Not to mention walking, and then pushing a dual stroller, for miles. Eventually we get back to the hotel, get the kids ready for bed, and pass out. Only to do it again the next day on even less sleep!

This was Calvin's best trip ever, and by a large margin. What a difference a year makes! He was able to keep his body under control enough to stay with us, without physical contact, more than half the time. We were still hyper-aware of where he was, but we didn't need to have a death-grip on his hand.

We're constantly looking for progress, and I've written a few times about new things Calvin has done, but a lot of it gets lost in life's daily grind. Sometimes it takes an experience which is easily comparable to a similar experience from an earlier time to see just how far he's come..

Something happened this weekend that was so great, so exciting, so unfathomable not too long ago, that I had to share...

You see, for most of his life, Calvin's been a "bolter." When he was younger he pegged the needle on the ADHD sliding scale, and staying in one place was not something he could do. When you couple that with an irresistible urge to follow any given impulse with complete gusto and reckless abandon, you get a bolter.

We've chased Calving through shopping malls, grocery stores, parks, doctors offices, Target (on too many occasions), and even a parking lot (only once – but that's because we're paranoid about it!) Over the last couple of years Calvin has gained better control over his body, and he's become more of a wanderer than a bolter, but we are still very aware of our surroundings at all time.

Yesterday Calvin & I went to Home Depot to buy a few things. He drove the cart for me (80% independently), helped me pay for our stuff, and drove the cart out to our car. We opened the back of the van to load our bags, when Calvin casually took a few steps away. There weren't any cars around, so I gave him some leeway, although I was ready to sprint after him. He walked down the driver's side of the van, around the front, and opened the passenger door. He climbed in, sat down, and closed the door behind him! Then he looked back over his other shoulder to see me, and gave me a huge, proud-of-himself, smile. It was awesome – a highlight I'll keep in my "best of" memories for a long time...

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Life can be a grind sometimes, and it's easy to get stuck in the day-to-day minutiae. This can be even more true for families with kids on the autism spectrum – sometimes just getting through a day is all you can hope for! It's those days in particular when I like to take a step back and look at the bigger picture of how much progress Calvin has made.

When you get caught up in the mindset of looking at each day as a success or failure, the failures can outweigh the successes, and it can drive you crazy. "He had a good day today. He had a bad day today – meltdown. He had an ok day. He had a bad day – wouldn't work. He had a good day. He had a bad day – no sleep." Etc. Etc. It becomes very hard to see any progress, and the bad days can wear you out.

I plotted "Relative Happiness" against "Each Day". Notice the highs and lows from day to day. ps – this is a hypothetical graph (I haven't been charting happiness every day!)

As time passes, you might find that he has more good days in a row before a bad day, or that the bad days aren't quite as bad as they used to be. But if you're still looking at daily results, you might not see it. You'll be too stressed out from yesterday's bad day, fretting over when it's going to happen again.

Notice we're higher up on the "Relative Happiness" scale, and we're having more good days than bad days. But it's still hard to see any kind of trend.

It's when you can take a step back and look at the bigger picture that you really see the positive results of all your (and your child's) hard work. How is he doing today compared with 3-6 months ago? How about compared with a year ago? Pull out your pictures from last year (or your video or journal) to remind yourself of what the struggles were. You'll probably find that today's bad days are better than yester-year's good days. And today's good days were unimaginable – a dream – not too long ago.

This is the full chart that the previous two were excerpted from. Now, looking at a 2-year block of time, it's pretty easy to see the forward progress.

Keeping things in perspective is something that I find helps a great deal.

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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...

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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.

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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.

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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."

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!

Last night we joined hundreds of other families at the McCormick-Stillman Railroad Park in Scottsdale for a great evening to celebrate the holidays. This has become one of our favorite nights of the year, and one that we look forward to every holiday season. The park does an awesome job of bringing the season to life, and on this one night they invite the entire special needs community to be their guests, with free train & carousel rides, cookies & hot cocoa, popular TV characters like Elmo and Cookie Monster, and even a chance to meet Santa!

Even though we try to lead a robust life, and to participate in many different activities, this one's always special. We enjoy bumping into old friends, and meeting new ones. And it's always nice when you can let your guard down a little bit, because everyone there shares a common bond – there's a lot of support, encouragement, and understanding going around.

ps – I've never embedded a slideshow into a blog post before.. How's this look?