AZGGG-ENGLISH-AAAAAA!

I’m known for looking at the positive side of things almost to a fault. If you’re a parent of a child with Asperger’s, PDD NOS or high functioning Autism, you’ve probably learned, like I have, to “forget about the storm clouds and instead learn to dance in the rain” as I’ve heard it aptly put.

The key is adapting. It’s learning to embrace your child’s world, even if it is a unique and candidly really strange one at times. A big part of Benjamin’s world is dedicated to some pretty, well, atypical interests.

First and foremost, Benjamin loves elevators.

He loves riding them, talking about them and even watching videos of them on YouTube. (Yes, there exists a small group of elevator aficionados who diligently videotape seemingly mundane elevator rides as their life’s passion.) If you showed the Woozle a video of a non-descript elevator simply opening and closing at a run down Cincinnati Holiday Inn, he’d be in heaven.

DieselDucy is sort of the Stephen Spielberg of YouTube elevator videos. You can check out his astonishing 600^th video here. It’s going to be a sure-fire hit in our living room.

http://www.youtube.com/watch?v=obHo7C0tUXE

But watching elevator videos is passive. Like any parent, I want to be involved in my son’s interests so we’ve gone “elevator riding” hundreds of times over the last few years. Whether it’s the majestic set of four glass elevators at the Embassy Suites near our house or a run down Otis with bad fluorescent lighting, it’s the Woozle’s favorite hobby. And his enthusiasm is oddly contagious. I can legitimately say I’ve learned to enjoy riding elevators, too. We even made our own elevator video that you can check out at the link below.

http://www.youtube.com/watch?v=LnYBjJAxQb8

We went to see the Monster Truck Show where a three-ton truck jumped through a ring of fire while two motorcycles crossed through the same ring in the opposite direction. I asked Benjamin what the most exciting event was of the night and he cited the elevator ride to get to our seats. I wasn’t at all surprised.

Then there’s AZGGENGLISHAAAAAAAAAA.

When Benjamin was three and started writing (way ahead of schedule) he’d begin every page by neatly marking down “AZGGGENGLISHAAAAAAA.” Once that was scribbled, he could then relax and write something else. Just seeing the pattern made him feel comfortable. If he was ever in a situation where there was a lot of commotion in the room, making him feel uneasy, the Woozle would find a piece of paper, write AZGGGENGLISHAAAAAAAAAAAA and feel calmer. It centered him. Nancy and I have no idea where that pattern came from but like the elevator riding, we’ve come to appreciate what it means to him.

When I first showed him how to use a computer, he was euphoric that you could hold down a letter and it would repeat the A until you let up. That meant the AAAAAAAs at the end of AZGGGENGLISHAAAAAAAA could go on almost forever. He would hold down the AAAAAAs for what seemed like an eternity and then try and count them. It usually went into the hundreds. One time we even let him print it out.

57 pages of AAAAAAAAAs.

Today, when he plays make-believe, (that, itself, is a topic for a blog) he will sometimes refer to the “AZGGGENGLISHAAAAAAA Hotel.” And as always, the crowning jewel of the hotel is the elevator. Sometimes it’s an Otis. Other times it’s a Montgomery. Sometimes it’s hydraulic. Other times it’s traction. But it’s always the focal point.

It takes tremendous effort to keep interests from becoming obsessions. But I think having that interest, uncommon though it may be, is healthy for him. Seeing your child enjoy something and be able to share in that experience, yourself, at whatever level, is perhaps the greatest joy for any parent. We may not be shooting hoops in the backyard or playing mini golf but those other parents will never experience the thrill of elevator riding and AZGGGENGLISHAAAAAAA. Definitely their loss.

Walking Out Of One School and Literally Walking To A New One.

Ok, it’s been a really, really, REALLY long tome since I updated the blog. Part of it was because I wondered if I was truly comfortable sharing with the world very personal things involving my son. Part of it was just the lack of time. Running an ad agency during a recession is pretty much two full-time jobs. However, after a lot of thinking, I’ve decided I’m going to resume it. And my goal is to actually do it consistently.

Starting with this post, I’m going to try my best to have a new blog post every other Monday. I hope I can follow through. My goal is to help other parents like me who feel alone out there. I was amazed the second blog actually had several hundred views so hopefully it is of some value.

Now enough about the blog itself - here’s the latest on what’s been going on…

As reported back in the late summer, the Woozle went back to school. We enrolled Benjamin in a “typical” Kindergarten classroom at a private school. We felt he would do better with a smaller class size and with kids he knew from the previous school year. His precious 5-year-old optimism was surpassed only by my own (and my wife’s, of course.)

Things would quickly change.

From the moment the first bell rang, Benjamin wasn’t able to focus, he couldn’t stay in his chair and he was touching other children - all habits he seemed to have beaten by the end of Pre-K. To make things worse, the school didn’t really have the support services we thought they could provide and Benjamin’s teacher, though well-meaning, wasn’t trained in working with special needs kids. Every day he could earn up to five stars for behavior and participation. If he got two stars it was a miracle. Zero stars was the norm. Benjamin truly wanted to please us and his teacher, he just couldn’t.

My wife cried just about every day after school.

The worst thing was the other kids in the class were starting to use him as a scapegoat. If little Billy and Sally pulled each other’s hair on the other side of the classroom and Benjamin’s teacher asked what happened, Billy would say it was Benjamin who did it. Sally would say Benjamin told her to pull hair.

It was a bad environment that was only getting worse. Rather than trying to help him, the school seemed to be documenting every misstep Benjamin made as if they were building a case against him. Plus, we were paying for an expensive private school and sometimes up to $1000 each month for therapists to be in the classroom. We were going broke fast. I wouldn’t mind getting in debt up to my eyeballs if it meant providing a positive environment for my son, but this seemed to be a situation that wasn’t working for anyone. Benjamin started talking bad about himself, saying all his friends wished he was “normal.” That was the last straw. We made the decision to take him out.

The best thing about rock bottom is there’s nowhere to go but up.

And up we went. Two major events took place in the late fall that really did change our lives. First, we met Mrs. Beaver. (No, that’s not a character from one of Benjamin’s books.) Mrs. Beaver is a teacher at Beauclerc Elementary, our neighborhood public school. She teaches in an “inclusion” environment. That means it’s a typical Kindergarten curriculum but her classroom is accepting of and prepared for kids who are a little different. Not only does Mrs. Beaver have a degree in special education, she has lots of experience with children on the spectrum, so she “gets it.”

She’s truly an amazing teacher who knew right from the first minute how to work with a child like ours. She’s unflappable and unwaveringly positive. Even though it makes her job a lot harder, she works with our therapists on implementing an intensive behavior program. We saw results right away.

Though still having his challenges, Benjamin has made incredible strides in his new environment. Our sense of optimism was resurrected from the ashes.

The next big change was adding medication to the equation. I’ve always believed that medicine should only be used if absolutely, positively necessary – especially for medications that affect a child’s brain. However, observing Benjamin, and seeing how frustrated and sad he would get, unable to control himself, Nancy and I decided that it was time. Our doctor recommended a medication for ADHD.

As Mrs. Beaver put it, the change was as though someone flipped on a switch. Benjamin suddenly gained the ability to focus in the classroom. He was able to restrain himself from touching other kids. He engaged in conversations, albeit rough ones, with the other kids in his class. He started to make friends. He was able to stay on task for his schoolwork. All this while he worked really, really hard with his amazing therapist team.

I can tell you one of the most thoroughly glorious moments in my whole life came when my wife called me one day after picking up Benjamin from school. Her voice was cracking. “He got the highest score you can get today,” she said. “E for Excellent.”

“Are you sure it’s not ‘E’ as in just before ‘F’?” I asked.

We had to email the teacher to confirm. Sure enough, a perfect day.

The days that have followed have been remarkable. There have been bad days, and even a few really bad days, but those have been strongly outweighed by strings great grades and smiley face laden report cards.

So Benjamin pulled off the comeback of the year. Which, I must admit, is the main reason I was inspired to continue this blog. For all those parents who start doubting whether they’ll ever see sunny skies, I can tell you anything is possible. Hopefully Benjamin’s story can inspire all of us to never give up.

The Woozle Goes Back to Schoozle

Some lessons learned in taking a child on the autism spectrum
back to school.

Is a picture always worth 1,000 words?

Being a writer, I know that sometimes those 1,000 words can reveal what a picture simply cannot. I find this is often the case with children on the spectrum. A smiling face and precocious expression captured in a single moment rarely depict how fragile a state that can be once the environment changes.

In looking at this instantly classic picture of the Woozle, you see a beautiful child who looks eternally poised to take on the first day of Kindergarten. Yet when school actually began, (Benjamin’s at a private, mainstream school with neuro-typical children) the new routine, the new environment, the new teacher and the constant demands in the classroom left him really struggling to survive.

He was pinching other kids’ elbows, a calming mechanism he uses. He wandered the classroom incessantly. He spit on the ground for no reason. He lost all three smiley faces he was given to start the day.

Not exactly picture perfect.

Could all this have been avoided entirely? Probably not.
Could it have transpired differently? Possibly.
Could it have been worse? I think, definitely.

Here’s what we did right:
1) We made sure that we took Benjamin to school the week before to meet his teacher and get familiar with the classroom. That alone kept him from a total meltdown on day one.

2) For days, probably weeks before school started and several times on the morning of school, we set up what the expectations were for good behavior. Although he didn’t many of meet them, we’ve come to learn that you’re usually not working for the immediate result. You’re working on the behavior down the road. It’s a marathon, not a sprint. The stimulation of the room was too much to overcome, but Benjamin realized he didn’t meet the expectations and knows what to work on. Soon he’s going to get there. It took A LOT of hard work and A.B.A. therapy just to get him into that typical classroom, so we know he continue to make great strides.


3) We let his teacher and other parents know what to expect. Too many parents are either ashamed or in denial that their children have special challenges. Every kid has an issue of some kind. It’s okay. You deal with it. Instead of day one ending with other parents and his teacher trying to cut our heads off, we actually got a lot of support. The parents at Benjamin’s school have been awesome.

Here’s what we should have done better:
1) While we let Benjamin’s teacher know about his challenges with communications and focus, we could have done a much better job informing his teacher on specific techniques we use at home to deal with those issues. Consistency is the key to improving behavior and we dropped the ball.

2) We had two weeks of “down time” in between his summer camp and school where we slacked off on the errorless teaching methods involved in A.B.A therapy. It was our way of giving him a “break” but it left him out of practice when school began. Managing inappropriate behavior of children with PDD NOS, Asperger’s or high functioning autism needs to be a never-ending job. We’ll know better for next year.


Tuesday through Friday of his school week proved slightly better. One smiley face out of three for four days straight. Not great but better than zero!

For week two, we made the decision to bring in a shadow. We feel that a week or two with some on-site assistance will help get him permanently steered in the right direction for the year. We’ll see. We’re also bringing in a new behavior specialist to work on a behavior plan for the classroom.

I know of only two things that start with the sound of a bell. School days and prize fights. This year, no doubt is going to be a battle with many ups and downs. But Benjamin genuinely wants to do well. We’re determined to give him the tools he needs to thrive. With the shadow’s help and a week under his belt, Benjamin earned three smiley faces on day one of week two. I’d love to take 1,000 words to tell you how proud I am of him. Maybe I’ll take a picture instead.

Turning Obsessions Into Strengths.

How I turned Benjamin’s fixation on letters and numbers into a love of art.

Certain attributes are essential to successfully raise a child on the spectrum. You need patience, determination and the ability to remain unfazed when your forearm is used as a Kleenex. Yet, I’m continually discovering that creativity just might be the most important of all attributes to possess.For children on the spectrum, even the most straightforward problem can’t be solved in a conventional way.

For example, to introduce a neuro-typical child to the joys of art, all you’d probably need to do is give them some paper and markers. Mission accomplished: The next Picasso is born.

My son Benjamin, on the other hand, is a little guy who would much rather fill a page with a predetermined sequence of numbers or letters. (Who needs another rainbow next to a smiley sun anyway, right?) While my wife and I appreciate the remarkable focus he puts into selecting each “A” or “4”, we feel he'd really benefit from an outlet that would allow him to discover the power of imagination. We feel he could express his emotions though art, as well. (What could be better for a child with communications challenges?) Since Benjamin’s “art” was little more than an endless sequence of numbers and letters, drawing time was only serving to increase a fixation we were hoping to lessen. That's when I knew I had to get creative.

For Benjamin, my goal was to take his fervent love of listing numbers and letters and use that as a way of fostering, maybe not a love of art, but at least a mild interest.

It worked.

Here’s what I did. I got down to eye level (I think that’s critical) and I told Benjamin we were going to do some fun things with numbers and letters. He was excited about that, of course. I started off with him writing just as he always does. (He likes writing in very straight rows and never wants to deviate.) After he had a few rows done, I requested he draw a letter sideways. He didn’t want to do it at first. But once he was rewarded in the proper way, he eventually didn’t mind. Before long, we were writing numbers and letters backwards, sideways and upside down.

Now it was art time!

We started with a new sheet of paper. I started telling Benjamin to put an “M” here, upside down "7s" there and an “O” and an “1” just about everywhere else. Before long, and unbeknownst to him, Benjamin had created his first masterpiece. Then I said, “Look at the paper, you just drew a picture of yourself!” I wish I had a painting of the look on his face. It was a priceless mix of pride, elation and total surprise. He was so excited, he then created the drawing you see above, complete with monogramed shirt.

To me, success in parenting a child with ASD is all about “creative transitioning.” Progress from point A to point B is almost always accomplished through hard-fought inches, not leaps and bounds. And it often takes an original approach that only you can come up with for your child.Benjamin has really taken to art and now asks to draw ALL THE TIME. While his art work still occasionally consists of assembled letters and numbers, he now uses them much more as a means to create versus being the actual object of focus. He even figured out a “V” makes a great cat ear!

So before you resign yourself to believing your child has a limitation of any kind, I encourage you to get creative and figure out ways to leverage your child’s interests to help them grow and expand their capabilities. You’ll be surprised what hard work and a lot of creativity can accomplish.