Monday, July 14, 2008

Get Over It

I'm sure that at one point or another, we've all asked the questions "Why me?" and "What did I do to bring autism into my (our) life?"

I can't answer those questions for you.

Sometimes when we're looking for answers, what we really need is motivation.

Dick Hoyt gives me a lot of motivation. Whenever I get a little bit down, I think about Dick Hoyt and his son Rick, and I tell myself to Get Over It. Don't be a sissy, and don't waste time feeling sorry for yourself – just get out there and make Calvin's life better!

Today I stumbled across a copy of Dick Hoyt's story, so I thought I'd share it with you. The story is written by Rick Riley and published in Sports Illustrated – give it a read below. I've also included a video clip, but it's hosted somewhere else, so I can't guaranty how long we'll have access to it. Just make sure you have a tissue handy when you watch the video!

Strongest Dad in the World

by Rick Riley

Sports Illustrated Magazine, Life of Riley, 6/20/2005


I try to be a good father. Give my kids mulligans. Work nights to pay for their text messaging. Take them to swimsuit shoots.

But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars -- all in the same day.

Dick's also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. Makes taking your son bowling look a little lame, right?

And what has Rick done for his father? Not much -- except save his life.

This love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs.

"He'll be a vegetable the rest of his life," Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution."

But the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way," Dick says he was told. "There's nothing going on in his brain."

"Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain.

Rigged up with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" And after a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out, "Dad, I want to do that."

Yeah, right. How was Dick, a self-described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. "Then it was me who was handicapped," Dick says. "I was sore for two weeks."That day changed Rick's life. "Dad," he typed, "when we were running, it felt like I wasn't disabled anymore!"

And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon.

"No way," Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially: In 1983 they ran another marathon so fast they made the qualifying time for Boston the following year.

Then somebody said, "Hey, Dick, why not a triathlon?"

How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried.

Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii. It must be a buzzkill to be a 25-year-old stud getting passed by an old guy towing a grown man in a dinghy, don't you think?

Hey, Dick, why not see how you'd do on your own? "No way," he says. Dick does it purely for "the awesome feeling" he gets seeing Rick with a cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best time? Two hours, 40 minutes in 1992 -- only 35 minutes off the world record, which, in case you don't keep track of these things, happens to be held by a guy who was not pushing another man in a wheelchair at the time.

"No question about it," Rick types. "My dad is the Father of the Century."

And Dick got something else out of all this too. Two years ago he had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. "If you hadn't been in such great shape," one doctor told him, "you probably would've died 15 years ago."

So, in a way, Dick and Rick saved each other's life.

Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass., always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.

That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.

"The thing I'd most like," Rick types, "is that my dad sit in the chair and I push him once."



So the question is: How many marathons did you run for your child today?

Wednesday, July 9, 2008

Why Science doesn't work

There are hundreds of alternative treatments available for parents of autistic children to try.

Researchers, scientists, and the medical community at large have made a lot of noise about the validity of most, if not all, of these alternative treatments, saying things like, "They haven't been scientifically proven to work" and "They're treating something which has been scientifically proven to be inaccurate".

They would prefer to test these various treatments using two different methods, either of which would be scientifically valid.

Double Blind Studies. Take 200 similar kids, give 50% the treatment and the other 50% a placebo, and study the effects. If the results are different between the two groups then the treatment works.

Identify a Single Variable. Keep everything else in your child's environment exactly the same, and introduce one new variable. Then see what happens. If you see improvement then the variable made a difference.

Both of these methods are great, but both of them have major problems for parents trying to help their little ones.

Problem 1. There is no such thing as 200 autistic kids who are otherwise similar - autism affects each child differently, all the way down to their brain and central nervous system's ability to process information. There are many cases where a treatment/supplement helps one child and has no effect on another child, or even makes him worse.

Problem 2. In many cases, a child will make improvements based on multiple variables working together. In these cases, it would be impossible to isolate the one variable which caused the improvement.

Problem 3. Time. If we wanted to try 200 different remedies, treatments, therapies, supplements, diets, etc., and we kept everything else constant, and we tried each "variable" for one month, it would take 17 YEARS to get through all the possibilities. And that's just doing them one at a time!

Personally, we didn't want to wait 17 years. We believed we had a small window of opportunity, a few years at the most, to make the biggest impact on Calvin's life.
We listened to the scientists for the first year or two, but then we realized they didn't really have an answer - they were guessing as much as us, but would only try one thing at a time.

After that, we tried a lot of different things, often times in combination. If we threw 6 new things at him, and if/when he improved, we were happy with the improvement. Then, over time, we could try to reduce or eliminate some of the new things to figure out what wasn't necessary and/or helpful. If we introduced new things and he had a bad reaction, we could pull the plug on some/all of them quickly.

One of the keys is to keep a detailed record of what you're doing, which I've written about before. Another key is to be patient, yet impatient, at the same time. But listening to the doctors and scientists and taking their words as gospel - that's not the key. Maybe if they had an answer or a solution I would think differently. But so far they've proven that their methods aren't helping each individual family out there.

Wednesday, July 2, 2008

Heavy Lifting - an insprirng story

We all have a lot of time & energy invested in our kids, especially our kids on the ASD spectrum. And I'm sure that anyone reading this, myself included, would do/buy/give anything to gain a cure for their child. I also believe that many parents out there have put aside their own hobbies, interests, and even dreams, in order to provide a better life for their "baby."

Enter Melanie Roach.

Here's the story of an Olympic athlete who will be competing this summer in Beijing, who is also a mom to 3 kids - one who has autism. There's no doubt who I'll be rooting for!

Take a few minutes to watch this heartwarming (and powerful) story. (http://video.on.nytimes.com/?fr_story=FRdamp271826) Then get ready to take on the world!

Thanks to my friend and colleague, Dru Bloomfield, for sending me this story. (Dru has more drive and energy than most of us - I'm a little bit surprised she's never shown me a gold medal of her own!)

Wednesday, June 11, 2008

We survived another trip to Disneyland

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..

Monday, May 19, 2008

Autism Awareness Ribbon jibbitz

Summer's here (it's going to be 108 today in Phoenix, which counts as summer in my book!), which means it's about time for summer wardrobe, including shoes. I don't know about your area, but around here I can't go out to the mailbox without seeing kids wearing Crocs shoes. Our boys have a couple pairs each, so we're part of the phenomenon..

Last summer we bought jibbitz for the boys – the little shoe-jewelry pieces that kids can use to customize their Crocs. They each picked out the ones they wanted, and we also ordered an autism awareness ribbon jibbit online. This year we might have to order a couple more...

Saturday, May 3, 2008

Keeping track of mountains of paperwork

If you're fairly early in your journey into autism, this is a very important post. If you've been at this for awhile now, you still might find a few good ideas, but it'll take some effort to pull off a change!

This month marks the 7-year anniversary of Calvin's first home ABA program. That means we've been gathering paperwork from doctors, schools, therapists, the internet, etc. etc. for 7 years. And we've been making our own notes and journals as well, just trying to help make sense of what's going on at any given time. (why is he sleeping better, or worse? why did his bowel movements change? etc. – you know what I'm talking about..)

Well, here's what our filing cabinet looks like today. (yes, it's a mess!)




I could tell you the 8 schools Calvin has attended so far, and the dates he was at each one of them, but you'll need to give me a couple of hours to dig through everything first. What was the med trial we did when he was 4 or 5 that had horrible side effects? I'll need more time to find that answer, too.

You see, at the time things are happening, they seem so easy to remember. But a few years and a couple thousand pieces of paper later the details get fuzzy. If I was starting down this road today, here's what I would do differently..

Keep track of key events in a digital format (on your computer) in a highly flexible format with dynamic search capabilities. Here are some ideas, depending on your level of tech-savvy.

Create a personal blog. You can visit www.blogger.com and build a personal blog in less than 5 minutes, and it's free. You can easily checkmark (or uncheck) boxes so that the blog is not available to search engines, and can only be read by those you give permission to. This makes it a private blog, not available to the public. (although I would still avoid writing personal info like SSN, DOB, etc.)

You can create categories to assign to each post (you can even assign multiple categories to a post.) I would create categories for: ABA, Fidget Items (or Stims), Hab, Homeopathy, Horses, Illness, Medication, Music, OT, PT, Speech, School, Sleep, Social Settings, Vacation.

Write a short post whenever something noteworthy happens, with a few of the details & highlights which can jog your memory later. IEPs, Doctor Visits, Medications prescribed, Sleep patterns (he slept through the night for a week straight – yea!). Etc. The blog will time stamp each entry for you.

Over time, you'll be able to search by category, or by words, or by time, and you'll find the posts that match your criteria. Then you'll see the date you wrote it, so it will be very easy to go find the specific IEP you're looking for in your file cabinet. ;-)

Buy Microsoft One Note (<$100). (info here) Imagine having an unlimited amount of notebooks, and each one can have anything in it. A quick, handwritten note. A webpage printed directly to your notebook. Contact information for the doctor's office. etc. You can have a notebook for each of the categories, and you can add anything which pertains to that category to them.

You will find One Note fairly intuitive if you use Microsoft Office products already. It's not quite as fast and easy as the blog idea, and it's not free. On the other hand, it's more robust in what you can store, and it's on your computer so privacy is never a concern.

Use Microsoft Word or Excel. There's no reason you can't build your own journal with either one of these. It may not be as fancy or as dynamic, but either option is a whole lot better than paper stuffed into a file cabinet. Again, I would focus on making notes regarding key people and events. I would try to use the Category Words at the end of each entry, which will help you find things later.

The process can be as simple as opening Word and beginning to type – no different from opening a spiral notebook to write a journal entry. It can also be very detailed with tables, filters, drop-down categories, and more. Those of you who know how to use the power of Excel could build something pretty fancy.

Other thoughts

I'm sure there are other options out there – Outlook Journal comes to mind as another alternative. There are also some great scanners available which have come down in price. I've heard that you can get a commercial-size scanner to scan different sizes of papers and convert the paper text into searchable text for about $700. Someday I might consider one of these to sort through our mountain of paper.

BACKUP YOUR DATA! Regardless of the method you choose, please backup your data. Always think about this: what happens if your computer doesn't turn on tomorrow? CD-ROMs, DVDs, External Hard Drives, www.mozy.com – there are many choices available, please use one.

Friday, April 25, 2008

AIMS Testing Complete

Arizona's Instrument to Measure Standards (AIMS Test) is a standardized test that all Arizona students must take, and pass, before graduation. The test is adjusted for each grade level, and the results are reported publicly in statistical analysis format – rankings are available to view by school, by district, by race, by sex, by grade, etc.

Calvin recently finished his first ever attempt at the AIMS test, and we as parents couldn't be more proud of him – for so many reasons..

He took the same test as every other 3rd grader in the state. The only modifications were in how the questions were presented to him (one at a time), and he was able to indicate his answers using letter cards, rather than darkening in a circle with a #2 pencil. (his proctor then darkened in the appropriate circle for him).

He completed the entire test. Every section. And for the most part did not require the allotted amount of time.

He did not have any coaching or verbal cues regarding the questions. Each question was simply laid in front of him for him to read on his own, and he could select his answer whenever he was ready.

He asked a couple of times to go back and change a prior answer (and each time corrected an incorrect answer.)

I don't think we'll ever get to see his individual results, and his teachers aren't allowed to give us any specific information. But we've heard "unofficially" that he did an outstanding job (probably better than most of the typical 3rd graders out there.)

Considering this is the first year he's ever been in an "academic" environment, and considering it was just a couple of years ago when we were told, in an IEP, that he didn't know more than 15 words *receptively* - this was a big accomplishment.

For Calvin, his teachers, his therapists (and previous therapists), and for Cheryl and me – this was really satisfying news.

Great job, buddy. I'm so proud of you.

Wednesday, April 2, 2008

Music Therapy

When we first mention to somebody that Calvin gets Music Therapy, they almost always assume it's a bunch of kids sitting around in a circle and singing songs together, as if they're thinking "oh, the autistic boy likes to sing songs – how nice."

On one hand it makes me a little bit angry, because nothing could be further from the truth. Neurologic Music Therapy can have a profound effect on people who have difficulty controlling their bodies, such as people with autism, cerebral palsy, and those suffering from the effects of a stroke. (On the other hand, I can't blame them, because I didn't know anything about it before Calvin's diagnosis.)

Over the years, Calvin's NMT sessions became the most important hour of his week, and the people from the clinic were terrific with him. Cheryl & I began to get involved in any way we could, both with Neurologic Music Therapy Services of Arizona (NMTSA) and with Kris' Camp, a summer camp which shares many of the same protocols as NMTSA.

Last month Suzanne Oliver, the Executive Director of NMTSA, invited me to join her organization's Board of Directors. It's one of the biggest compliments I've ever received. (it's also one of the most nerve-racking – I hope I don't goof it up!) Now I get a chance to give back even more to the one person, outside of our family, who has given, and continues to give, the most to Calvin.



I strongly recommend you check out NMTSA if you live in Arizona, and to look into NMT services in your own state if you live elsewhere.

Monday, March 24, 2008

a bolter's parent's dream come true

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...

Friday, March 14, 2008

Government acknowledges link between vaccination and autism

Last week, in the first of 3 cases to go to trial, federal health officials concluded that childhood vaccines contributed to symptoms of autism in a 9-year old Georgia girl (as reported by the Atlanta Journal Constitution.)

The details from the court case are not yet completely available, but the result is. The U.S. Department of Health and Human Services has concluded that the family of Hannah Poling, of Athens, GA, is entitled to compensation from a federal vaccine injury fund. The amount of compensation is still being determined.

Obviously, this is going to add fuel to the vaccination debate fire. It's going to get even hotter when we look at the week's events in total. Let's take a look at how the week unfolded.

1. Senator, and Republican front-runner for the presidential nomination, John McCain was quoted as saying "there's strong evidence" that thimerosal is responsible for the increased number of diagnoses. This brings up a wave of federal spin following Senator McCain's comments.

2. The Center for Disease Control and Prevention, the American Academy of Pediatrics, the American Medical Association, the Food and Drug Administration, and the Immunization Safety Review Committee all stated that no scientific evidence points to a link between the two.

3. The associate director of the American Council on Science and Health expressed disappointment that McCain seemed to be poorly briefed on the issue. "I would hope that, as president, he would have advisers who would get it right. I attribute this to a misstep rather than policy."

4. The program director of the Arizona Partnership for Immunization says "...It doesn't surprise me that someone would not completely understand what the science is indicating." The group advises parents to discuss any vaccination concerns with their pediatricians (and we already know what the American Academy of Pediatrics says. – emphasis mine.)

5. The U.S. Department of Health and Human Services concluded that a family is entitled to compensation due to a vaccine's contribution to a girl's autism diagnoses.


Hmmmm. I wonder what Senator McCain really knew...

I'll stand by my article from last month – there are more questions than answers on this topic, and anyone who accepts the vaccination schedule as 100% safe across the board, dismissing any and all correlation between vaccines and autism, is probably earning a living from an organization who espouses that view.

Wednesday, March 12, 2008

Non-Toxic Weed Killer

Ah, Springtime. It is absolutely beautiful out right now – warm enough to bask in the sun during the day, but it still cools off nicely at night. It's the perfect time to get outside and... Pull Some Weeds!



I don't know about you, but our yard's a mess right now. All the nice rain we had this winter set up perfect conditions for weeds to grow like crazy – especially in the desert-landscaping sections! I started to pull weeds, using my hands &/or a hoe, but they overwhelmed me after awhile, so I reached for the spray.

I hate spraying RoundUp or other herbicides, since Calvin is so sensitive to chemicals. Not to mention Jonas is still only 3 (for a few more weeks, anyway) and plays back there every day – he's awfully young to be exposed to harmful chemicals.

Last week, on the advice of a friend, I sprayed a section of weeds with White Vinegar. Plain ole, store-brand, $2.99 per gallon, white vinegar. And it worked great! Maybe not quite as fast as RoundUp, but a week later you couldn't tell the difference; the weeds are dead. This week I'll spray vinegar on the rest of the weeds.

I haven't tried using vinegar on weeds growing in the grass, as I'm afraid it will kill the grass, too. Maybe I'll dilute it and try it on a small area..? I've used Weed B Gone (another herbicide) the last couple of years. It works great, but I'd much rather have a natural, non-toxic remedy. If anyone out there has any ideas, please share.

Monday, March 10, 2008

Kris' Camp fundraiser a success!

Saturday night's Wine & Cheese Event capped off one of the craziest weeks we've had in a long time, and the results were worth the effort! Everyone seemed to enjoy themselves, and the event went off without a hitch. (well, except a slight technical glitch.. darn Macs.) I saw a lot of great things during the night, but there were a few things I was most happy with:

Success. We ended up just short of our goal, but our goal was set high. This event raised a record amount for Kris' Camp – yea! And that was without a handful of notable people friendly to our cause, who couldn't attend for one reason or another.

Next year. After moving to a new venue last year, and then implementing some new behind-the-scenes changes for this year, we've set the stage to do even better next year. I'm confident we're going to beat this year's numbers by a long shot next year.

Raffle Winner. Watching the drawing for the winner of the Plasma HDTV raffle was the highlight of the event. The winner is a special needs teacher and reading specialist, who works at Kris' Camp during her summer "vacation". She is one of the most energetic and engaging people you'll ever meet, and our kids love her without exception. I think the whole room was rooting for her to win (as a second choice anyway, if they didn't win!), and was genuinely happy to see her accept the prize.

Here's a BIG THANK YOU to everyone who participated &/or attended. We really appreciate your support!

Here's a BIG CONGRATULATIONS to everyone involved in putting this together – you all did a great job and made this a great event!

We'll see you at Kris' Camp this summer, and then we'll do it all again next year! ;-)

Tuesday, February 26, 2008

non-verbal is NOT non-intelligent

I just saw the most powerful video I've seen in a long time.

Amanda Baggs is 27-years old. She is autistic, and is non-verbal. She performs many of the odd, repetitive tasks that we've all grown accustomed to. And she needs help with simple daily tasks (cooking, cleaning, etc).

But Amanda Baggs is NOT unintelligent. Armed with a Dynavox, a Dell Computer (she types 120 words per minute), and a Sony digital camera that can record video, she shot, edited, and uploaded this amazing video.






8:36 video. The first 3 minutes or so show Amanda and some of her "stims". The remaining 5 minutes show her discussing what she's doing and why.

I saw this video on an article at wired.com. The article talks about the video, and Amanda, in much greater detail.

Monday, February 25, 2008

Does therapy have to be fun to be effective?

I read an article this morning from Dr. Ann Milanese, director of Developmental Pediatrics at the Connecticut Children's Medical Center in Hartford, who highlighted some great points with regard to how therapy can be more effective.

1. Children are children first, and they have symptoms of autism second.

Think about that for a minute. We push Calvin to work as hard as he can, and he's made great progress over the years. But we also realize that some of his progress has probably come from simply growing up; all kids can do more at 8 than they could at 4, right? Also, just because a kid has autism doesn't mean he/she doesn't have fun - kids like having fun, and fun means different things to different kids.

2. Autism is a spectrum disorder with a good deal of variability in the way the symptoms express themselves.

I'm sure most of you already know this... Duh. But I think this point is still lost on the public at large. Autistic kids have different strengths and weaknesses, and are all unique individuals, just like typical kids. There isn't a one size fits all description available.

3. Therapy is more likely to be successful if it's fun. I think Dr. Milanese's point is that, while you need to work to develop weaknesses, no kid is going to prosper if they're not having fun.

We used therapy, especially in Calvin's early days of strict ABA-style, to hammer on his weaknesses. Basically, here's the program – now let's work our way through it (using rewards/motivators and breaks when necessary.) Calvin made a lot of progress under this program, but it's true that his most successful times were when we could figure out how to incorporate something he enjoys into the process of working on something he didn't. Even today, we try to mix hard work with play. Whenever we get greedy and demand a lot of hard work, all in succession, we'll also see lots of avoidance behaviors.

I don't think that's very different from anybody else, either. Our youngest, Jonas, doesn't enjoy work for work's sake. But if you get him playing an educational game he'll soak in every last bit of knowledge. I'd have to say I'm the same way – I'm older and have the discipline to force myself to work on improving my weaknesses, but I get a lot more out of it when it's fun!

People are people. Kids are kids. And autism can make learning and communicating a challenge...

Deal with it. Hit it hard. Make it fun!

Tuesday, February 19, 2008

Should you have your child's IQ tested?

This is a very serious question, and I think the answer lies in 2 different parts.

1. What is there to gain (or lose) by testing? If it will make a difference in the services available to your little one, it might be worth your while.

2. How fair is the test? If the test can be administered in a fair manner, then it might be worth considering.


Our local school district wanted to test Calvin a few years ago, and we almost shouted NO! in unison.

First of all, their assessment of his abilities was the lowest of everyone he worked &/or played with.

Secondly, there was nothing to gain by testing – it didn't matter if he did really well, since they had already proven they couldn't teach him. But if he did not score well, they would have the option of moving him into a lower-functioning class where he wouldn't need to be "taught".

Thirdly, they couldn't administer a fair test. They agreed that he had (has) apraxia and is non-verbal, yet they weren't willing to make accommodations for the test. Everyone else who worked with Calvin (ABA, Speech, OT, PT, NMT, and friends and family) would attest that he knew everything that was being spoken to him. He just needed to communicate via alternative communication methods, such as PECS (Picture Exchange Communication System), word cards, or Facilitated Touch.

This is one of those questions that doesn't have a right or wrong answer, per se. Just think about who wants the test, and why, and remember that the results will become part of your little one's permanent record...

Wednesday, February 13, 2008

The War over Immunization continues

A couple of weeks ago, on January 31st, ABC aired the pilot episode of Eli Stone – a fictional show featuring an attorney who helps a family fight (and win) a case against a pharmaceutical company, convincing the jury that a mercury-based preservative in a vaccine caused the child's autism. Since that time, the war over vaccines has rekindled its flames.


Many people in mainstream media and medicine dismiss the immunization link out of hand, as if anybody who still believes there's a link in this day and age is either uneducated, anti-establishment, or a parent looking for someone to blame for their problems. Here's an article published yesterday in the Great Falls Tribune (Montana), written by the medical director of a medical center. It's a very typical response from a medical director.

Personally, I don't buy Mr. Mainstream's position. There are too many factors in play which lay seeds of doubt..

Money. The amount of money at stake is almost unfathomable. Not only hundreds of millions of dollars in revenues, but billions of dollars in potential liability. Any change to the status quo could be devastating.

Politics. Big Pharma. Health Insurance. Physicians. The Center for Disease Control. Congress. Any change will have winners and losers, and nobody wants to lose, so they all lobby for the status quo. Not to mention the political gridlock.. Remember how hard it was just to get Casual Dress Friday approved at work?

Control. The CDC wants the general population to be immunized for major diseases – no doubt a good idea. The one time in everybody's life when they are most likely to see a doctor at regularly scheduled intervals is when they are babies. The existing guidelines work very well in this regard.

Perfect Effectiveness? Everyday we read about misreported clinical trial results, or deadly side effects, or ineffective drugs. Yet we're supposed to believe that giving an infant/toddler dozens of vaccines is 100% safe, 100% of the time, for 100% of the children, with no possible side effects or connection to autism?

Timing. Shortly after the vaccinations started containing multiple vaccines in each shot (along with a preservative), the cases of autism began their meteoric rise. Yes, I'm sure there are lots of other things that have changed along the way. But is there anything else that is given to every child, and with such a close correlation in time?

Personal Anecdotes. How is it possible that there are so many people who never knew anything about autism, and were raising a perfectly happy and healthy toddler who regressed significantly, and was ultimately diagnosed with autism, the week after receiving a vaccination? I can't believe that these people all banded together and decided to tell the same lie.

This country's legal system is based entirely on "burden of proof" – if a jury has any doubt whatsoever, the accused is set free. Here is a case where there is LOTS of doubt; why can't we agree that it's not 100% safe, and that it needs to continue to be studied?

Kim Stagliano, managing editor of ageofautism.com, wrote the best article I've seen so far offering the opposite opinion of our Montana medical director. I recommend reading her post What if Autism Were Contagious? It's a great question – how do you think the CDC would react, and how aggressively, to a new epidemic which was as debilitating and wide-spread as autism? (if you have any doubt, think about what happened when HIV hit the US in the late 1980's...)

Walgreens shows disabled are able

Every parent wonders what their children's future is going to be like. Every parent of a special-needs child wonders about it even more, and often with angst.

Well, here's a story with a good ending. (hat tip to Judith at Autismville for finding this.)

Randy Lewis, a senior executive at Walgreens, has a son with autism, and knows not only that his son is capable of more than most people give him credit for, but that he will have a very hard time finding opportunities to prove it. Randy was able to use his position to tear down barriers, and to give people a chance to do some real work.

Click below to watch this 3:13 video. (link will open ABC News site.)

Walgreens video

Good on Randy, and good on Walgreens. That's a company doing the right thing.

Monday, February 11, 2008

What to do about mercury-containing CFL light bulbs

Last fall Cheryl & I made a resolution to find ways to conserve energy around the house; our goal was a 10% reduction in usage, and if we could combine that with some time-shifting, a 20% reduction in our electricity bill.



One of the first things we did was to change the highest-use light bulbs to Compact Flourescent Bulbs. I was nervous about this at first, because I remembered fluorescent bulbs from 20 years ago being noisy and having a weird glow. But that's not the case anymore; I actually like the CFL lighting better than our regular bulbs.

Now we have other concerns – these bulbs contain mercury.. What do we do if a CFL light bulb breaks? And, how do we dispose of them when they burn out without filling the landfills with mercury?

I normally don't write about the same topic on two different blogs, but today I discussed these 2 questions in detail on my real estate blog, and rather than repeating everything, I thought I'd link to it here.

Tuesday, February 5, 2008

Parents find ASD traits in themselves

Does the apple fall far from the tree?

I recently read an article on nytimes.com which talked about families using a child's ASD diagnosis to make sense of family traits – idiosyncrasies the parents or grandparents had or have.

I think every family does this to some extent, even families without any diagnoses. "He's independent, like his mother," or "She's very social, just like her dad." But it's probably done in more detail with families dealing with ASD, partly because we're looking so hard for answers, and partly because we've been trained to analyze behaviors.

Personally, I didn't know anything about varying degrees of sensitivity, until Sensory Integration was part of Calvin's OT diet. Now it's easier to explain why Cheryl likes deep-pressure massages, and doesn't seem to mind if her socks are bunched up, yet I can't stand massages at all, and get annoyed when my clothes twist or bunch.

It turns out that Cheryl & I are both "normal", but she falls near the Hypo end of the spectrum and I'm closer to the Hyper end. And now that we have 2 kids, it's obvious to see that both of them border on the edge of normal – Calvin used to be Hypo-sensitive but has made great progress, and Jonas can get upset over something seemingly very small, not quite hyper-sensitive, but close.

It's interesting to think about.

Monday, February 4, 2008

How BIG is your picture?

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.

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.

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.

chart of relative happiness
Looking at a two-year block of time, with lots of peaks and valleys, and where each month's "relative happiness" seems indistinguishable from the previous month's. But when looked at from a distance, the increase is tremendous.

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

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!