Hi, folks. It has been a while since I've posted. Is it a cop-out to say that things have been complicated? 

Most of my time has been spent dealing with Cooper's stuff and the upcoming transition to middle school in September. He's also reaching an age where I'm hesitant to say much of anything about him in case anyone he knows comes across this blog and either says something to him or squirrels the intel away for future use in a negative manner. Growing up is hard enough without your mom telling the world about all of your challenges, right?

Anyway, I was trying to sort through the muck that is my Yahoo email account, and I came across a short story I wrote about four years ago.

The Annoying Child

It was time for Goober’s bath.

“Goober! The timer went ding five minutes ago! Stop dilly-dallying. Bath now!,” his mommy shouted.

She sprayed the tub with Organic Au Naturel Tub Cleaner and was disappointed that, in this case, organic smelled like cow manure. She rinsed out the tub with water and turned on the faucet.

“Goober! I’m going to count to three.”

The house was quiet.

“Goober! Please bring your pajamas to the bathroom. Let’s go!”

More silence.

She picked up the novel she was reading and decided to spend a few minutes enjoying the unexpected serenity.

She put her hand in the water, which was now cold. Oh, well. People who want a warm bath should show up when they’re supposed to, she thought.

Maybe he got lost on the way to the bathroom.

So his mommy looked in the living room. He wasn’t inside the TV. He wasn’t on the sofa or the chair. He hadn’t put himself away in one of the containers of Legos. In fact, he hadn’t cleaned up his Legos at all. But that wasn’t unusual.

She opened the door to his bedroom. He wasn’t hiding under the bed or the sheets. He wasn’t in his underwear drawer. He wasn’t in his closet.

Where was he?

She went into the kitchen. He wasn’t in the refrigerator, the oven or the microwave. 

She pressed the foot pedal that opened the trash can. No Goober. 

The sink only had dirty dishes and the dishwasher was still full of clean dishes that she needed to empty. 

She opened and closed each of the four drawers in the kitchen. No sign of him.

Maybe he was in the linen closet. Nope. Only sheets, towels and toothbrushes. Coat closet? 

Not there either.

Huh.

Maybe he accidentally got picked up by the recycling truck.

His mommy was thirsty so she got a glass of cold water and sat down at the kitchen table.

Her foot touched something that was strange and familiar at the same time. It felt warm and soft. She kicked it gently. She kicked it again, less gently this time. She heard an odd “Mrrrr. Mrrrr. Mrrrr.” sound.

She bent down and peered under the table.

There was Goober. Why hadn’t he answered her before?

He held up a tube of Super Strong Glue and pointed to his lips. 

They were glued shut.

Well, she’d always said she wished he had a mute button.

Chapter 2

After spending $569.34 in emergency medical care to deal with Goober’s glued-shut mouth, his mom was in no mood to listen to him talk about which Lego set he wanted to buy first with his birthday money.

Or which Lego set got the best reviews on Brickset. Or which Lego toys the kids on the bus thought were cool.

Instead, she decided that he would need to earn back all of his Legos, piece by piece. There were four plastic bags full of Lego set instruction manuals, so he must have at least 30 sets. Each set had a minimum of 50 pieces which meant -- now she was giggling -- a lot of good behavior to get those Legos back!

So Goober’s mom told him that his Legos were being removed as a consequence, and he could start earning them back immediately each time he did something expected that demonstrated good behavior:

-- Pee in the toilet (not on or around it).

-- Pick his nose only in private (in his room or in the bathroom).

-- Pound on the door when Mommy or Daddy is in the bathroom ONLY when there is an emergency (defined as something involving blood, fire or a combination of those elements -- not when he had a Lego-related thought or question).

-- Deposit his spit into the bathroom sink (not onto the sidewalk, carpet or his mother’s shirt).

-- Say “No thank you” in a polite voice when he doesn’t want to eat something (rather than scream, “You want me to eat that disgusting slop? What, are you from Mars? No way!”).

-- Control his impulse to say “Smell my butt, butt, butt, butt, butt” or “Somebody farted, farted, farted” in front of anyone, particularly his 2-year-old cousin who liked to repeat everything that Goober said.

-- Talk about anything besides Legos.

There might have been more criteria on the list but Goober had stopped reading it by then.

There was no way he was going to do any of that. This was his house, too! Mom and Dad weren’t in charge. He got a vote, too, and he voted, “No, no and no.” Three no’s, just in case they weren’t listening the first two times.

He wanted his Legos back RIGHT NOW. So, once his parents were asleep, he would sneak into their room and take back all of his Legos. All 16 shoe boxes of them.

But he hadn’t planned on one thing.

The Legos weren’t in his parents’ room.

Chapter 3

The Legos, as it turned out, were in Mr. and Mrs. Smorgashboard’s storage space in the basement. 

Unfortunately it wasn’t as sanitary an environment as his mother had hoped, as pigeons had built nests inside the space, so the lids of the shoe boxes that contained the Legos were covered in dried bird doody that had hardened and couldn’t be scraped off.

Goober was making a solid effort to earn back his Legos. On a good day, he got as many as 55 pieces.

But he was bored. SO bored.

So he decided to be annoying while still being well-behaved. 

That required some thought.

First, he grabbed his mom’s Flip camera and made movies of himself yawning and brushing his teeth. Then he filmed himself poking through a bag of popcorn to identify which pieces were burned. He offered his mom the burned pieces. She thanked him for his generosity and said she would make her own popcorn.

But he was still bored and it was taking forever to earn back his Legos.

One day he was helping his dad with the laundry when he saw Mr. Smorgashboard walk down the hall toward the storage room.

“Dad, I have to go to the bathroom,” he said. 

When his father turned to open the dryer, Goober scurried down the hall to follow Mr. Smorgashboard.

“Mr. Smorgashboard,” Goober called out. “I have an idea!”

Goober ran up to his neighbor and told him that he knew his Legos were taking up a lot of space in the storage unit, and he’d be happy to take the Legos back.

Mr. Smorgashboard, who hadn’t even known that some boy’s Legos were in his storage unit, couldn’t see the harm in liberating space so his wife would have more room for whatever they needed to put into storage.

So after they arrived at his storage unit, and he saw the poop-covered boxes that Goober was talking about, he got out his large cart and they stacked the dirty boxes inside.

When Goober’s mom returned home that night, she tripped over box after box of stinky, pigeon-crusted plastic. She wanted to scream, but instead she smiled.

This was undoubtedly the work of her annoying child.

###

Sometimes I Dream About Charts

Using visual supports requires time and a bit of effort to get set up initially, but the payoff in our house has been huge.

When Cooper was a toddler, his wonderful speech therapist and I brainstormed images for his morning, afternoon, and evening routines. She printed them for me in color using Boardmaker software's Picture Communication Symbols (PCS).

I created durable surfaces for using Velcro to attach the images by covering some thick pieces of cardboard first with white paper and then with clear Contact paper. I cut up the Boardmaker images, covered those with clear Contact paper, and put Velcro on the cardboard panels and the images. Cooper had at least two therapy sessions after preschool each day, so I took headshots of his therapists and put them on the board as well, so he’d know who he was going to see that afternoon. We had fun with the images—there was one for going out to pizza, for a birthday party, and even one for Thanksgiving!

Although we shifted to written charts once Cooper could read, I still find images useful, particularly when labeling dresser drawers or reminding an 8-year-old to flush the toilet or use soap when washing one’s hands (yes, Cooper, I'm talking about you!).

Below are some sites where I've found images and charts that can be downloaded as PDF documents and viewed using Adobe PDF Reader. Best of all, they're FREE!

Scroll to the bottom for text charts I created for Cooper that you can modify and use at home.

PictureSET (www.setbc.org/pictureset/)

The visual resources on this site are made by professionals specializing in special education technology who work with students in British Columbia. Click on the “Home” category, where you’ll find charts for morning and evening routines, chores, mealtime, and more. Puberty is on the horizon, which is why my favorite is the "Smelling Fine" booklet and activity.

twinkl (www.twinkl.co.uk/)

Register for a free account, then click on “Parents” and “Home Routine and Timetable” for visuals to use at home. The site is aimed at teachers, but there are tons of useful images to use at home as well. You can upgrade to a platinum or gold package for a monthly or annual fee to get access for additional resources (if you do, I recommend using PayPal since it’s a U.K. site and U.S. credit cards might not be accepted for online payment).

Visual Aids for Learning (www.visualaidsforlearning.com)

Tons of images of everyday activities, which are often broken down by gender (love that, especially for bathing and toileting routines!). 

One Place for SpecialNeeds (www.oneplaceforspecialneeds.com)

Dawn Villarreal created this site, where she has uploaded many charts using Boardmaker images. You can search by topic or go here for charts and activity schedules with home routines.

Do 2 Learn (www.do2learn.com)

A heavenly site for those of us stuck in the 1980s with our black-and-white laser printers! Picture card images come in different sizes and the behavior management section has an array of handy charts.

speaking4autism (https://sites.google.com/site/speaking4autism/)

This site has sections on picture symbols (under AAC Information and Strategies) and visual strategies for behavior. The visual strategies page includes links to free software to create customized communication and schedule boards.

--

Why reinvent the wheel when you can tweak charts someone else made?

With that in mind, here are links to charts for Cooper's morning routine and afternoon & evening routine.

I came up with this expected behavior chart when he was in kindergarten and used it through second grade. Right now, we're working on getting him to remember to complete his posted routines without prompting; he can earn up to $1 per week for good expected behavior and cooperation, plus he now gets $1 per week for wearing his scoliosis brace.

Finally, here's a special homework frustration chart.

Happy charting!

Feeling Lost in the Forest

At Cooper’s annual comprehensive eye exam today, the optometrist said he was having some difficulty tracking. 

She explained that he turns his head to look at things, rather than move his eyes and use his peripheral vision, and gave me handouts that listed about 20 different exercises that we were to do at home, for at least 15 minutes a day.

I get the time commitment; I had vision therapy myself at Cooper’s age and again in my mid-20s, which is how I know that he has to be willing to do the exercises with me for them to be effective.

There were five handouts, each densely packed with activities. Just for once I wanted to be a “C” student, not an overachiever.

I asked if someone could demonstrate how to do the exercises so I’d know if we were doing them properly, especially since Cooper has difficulty taking direction from me (maybe because I’m his mom, not his therapist?), and was told that there wasn’t time to do that.

The optometrist noticed that I was feeling overwhelmed, and reduced the homework to one handout, with four simple exercises. The other activities, it turned out, were for when Cooper had mastered the first level (I hope to see that day!).

Then she recommended I bring Cooper back for a follow-up appointment in six to eight weeks, which is when I snapped.

I think she was expecting me to nod my head enthusiastically and say, “Of course!” with a huge smile.

Instead, I blanched, and said, “Six months. We can return in six months after doing these vision exercises.”

She said she needed to put in the notes that the patient should return in six to eight weeks.

I explained that I needed to have him do the exercises consistently for four weeks, and then schedule a follow-up, and that would certainly be more than eight weeks from today since we also need to start doing his oral-motor exercises and get him acclimated to his back brace to treat his early-onset scoliosis.

I added that if she puts six to eight weeks in her notes, then the person booking the appointments will tell me I was supposed to come in sooner when I call in a few months. I said I didn’t like being told that, since it made me feel like I am a bad mother.

And then I realized what was really on my mind. It wasn’t this doctor, nor was it this particular problem (after all, it isn’t unusual for an 8-year-old to have difficulty with tracking).

It’s that rarely a month goes by that Cooper isn’t evaluated by or taken to a follow-up appointment with one specialist or another, and no one has yet to recommend a quick, inexpensive fix that doesn’t require any action, effort, or oversight on my part.

Many times I feel as if I am the only one in Cooper’s universe of therapists, teachers, and doctors who is cognizant of each and every part of him that needs repair. (My kind, patient and loving husband is certainly in the loop on everything, and is as involved as he can be; there just seems to be an endless refrain of “We should be doing more of X” in my head).

The list of issues and challenges and difficulties and insufficiencies and inadequacies seems to get longer as he grows older:

Hypotonia (low muscle tone), which affects his

- eyes (weak ocular skills), so we’ve been given vision exercises to do at home;

- mouth (weak oral motor skills), so there’s a specialist and regimen of daily exercises that I need to implement this week;

- handwriting (weak core/abdominal muscles);

- overall energy and stamina (sitting up all day at school is hard work for his weak core, so he’s tired when he comes home from school, and gets upset when asked to do homework that requires him to do any writing), so he’s more willing to do homework assignments if I type what he says.

He also has issues with motor planning and eye-hand coordination, so sports aren’t high on his list of preferred activities. Actually, they’re on his permanent “No, thank you” list.

Autism affects his ability to cooperate and participate in the vision and oral-motor exercises.

Being on the spectrum also increases his resistance to engage in physical activities after school and on the weekends that most kids enjoy, whether it’s riding a bike or just spending time at the playground. (I am grateful that he eagerly joins his classmates for recess at school.)

He has sensory issues that affect his interest in food (he finds many smells offensive) and his taste buds. He's a picky eater with a short list of acceptable foods, and says that most food “tastes odd” to him (this is after he has decided to try a new food, which happens about a handful of times each year).

So Cooper’s plate was already full when we went to the orthopedist yesterday to have his spine X-rayed and assessed.

Scoliosis runs in my husband’s family, so this has been in the back of our minds from Cooper’s infancy, but I was impressed that my globally delayed son had achieved early onset of this spinal disorder.

After that doctor prescribed a back brace, to be worn 18 hours a day, I turned to Cooper and said, “How much do you want that Wii U you’ve been saving up to buy?”

This brace might be worn for as few as two years or as many as 11, since Cooper is likely to continue growing until he’s 19, and the goal of the brace is to maintain his current 32 degree curve and avoid having to do surgery on his spine.

Since I’m trying to be as blasé as possible about having to wear a brace, I told him that there are things that we need to do to take care of our bodies, and that we don’t always have a choice about what those things are. I reminded him about my colostomy (not the near-death part of it, of course!) and said it was gross and something I couldn’t really forget about, and wearing the brace is something he will eventually get used to and it certainly won’t be gross like a poop bag.

I try to focus on the improvements, the gains, the new skills mastered—and then the bar gets raised, again and again.

So today, in the spirit of welcoming a new year and celebrating Rosh Hashonah, and reflecting on the past one, I’m going to set aside all the suggestions and “To Do” lists and notes from doctor’s appointments.

I’m going to cherish Cooper’s spirit and sense of humor, and ability to surprise me, whether it’s getting on a boogie board at the beach and loving it or riding a roller coaster by himself at LEGOland last week.

He’s growing up, and he’s going to be fine.

Delusions of LEGOs

Yesterday I was woken up by an irate child at 4:13 a.m. The issue: where was the new LEGO toy we'd gotten at the LEGO store the night before?

Cooper didn't like the answer: the toy he was thinking of hadn't been purchased after all, and what we did buy was already on the living room floor, ready for him to assemble.

He seemed to have a different memory of what happened during our trip to the LEGO store, and no amount of clarification on my part could mute his hysteria.

He insisted that he was right, and I was wrong. "You don't have a good brain, Mommy!"

I wasn't surprised that Cooper was having a meltdown because he'd been impressively flexible the day before at the LEGO store, so now it was time for payback.

He wanted to buy two Star Wars LEGO sets that had been released on January 1. He'd been saving LEGO gift cards he'd gotten from his birthday last summer and was combining the amount with a gift card he'd gotten for Hanukkah. The sets, however, were already sold out in the store, so a nice employee helped us place the order online.

But this meant that Cooper would have to wait for another week before his new LEGO sets arrived, and his hope in going to a LEGO store was to have immediate gratification.

While waiting for the order to be placed online, I found a Ninjago keychain and asked him if he'd like it to replace the LEGO zipper pull that broke.

Then we learned that my LEGO VIP account had a $10 credit that could be redeemed anytime, and Cooper still had about $5 left on one of his gift cards after buying the Star Wars sets.

So he found a few sets in the $9 to $11 range, and then decided to peruse the new Legends of Chima sets he'd been reading about on Brickset (a website for LEGO fanatics). These sets were also released on January 1, and a lot of thought went into his ultimate decision to choose two Star Wars sets with his gift card money.

After we discussed the merits of various sets, he zeroed in on Legends of Chima:Target Practice, which, at $14.99, was within his budget.

Then I saw that another set, Legends of Chima: CHI Battles, had two mini-figures as well as two Speedorz (mini-racers that appear similar to the Beyblade); whereas the Target Practice set only had one mini-figure and one Speedorz. The CHI Battles set was $19.99, so I offered to give him the $5 to use toward that set if he chose not to get the Ninjago keychain.

We talked about how the CHI Battles set would be more fun to have when a friend is over.

I thought Cooper agreed to get the CHI Battles set, and he was excited when the employee we'd been working with gave him a free LEGO Legends of Chima: Ewar'sAcro-Fighter set (an exclusive polybag item being offered when your total purchase is more than $75).

For Cooper , these decisions carried as much importance as the process an adult might undergo to, say, buy a car. He had been thinking about his choices for at least a month, and factored in the sales tax when determining if an item was within his budget. He also knew he'd be responsible for shipping and handling charges if he ordered the sets online, so his preference was to go to the store in person (whereby his parents incurred transportation costs such as gas and tolls!).

Cooper was excited when we left the store, and agreeable when we stopped at a few other stores before we got in the car around 7:30 p.m. to head home. 

Despite it being a half hour past his usual bedtime, he was wide awake in the car on the drive home, talking about his new toys. I told him I'd get everything ready on trays for him to put together in the morning when he woke up.

The next morning, however, he had no memory of these negotiations and instead was convinced that he had been wronged.

His shrieking went on for a few minutes, and none of my usual tactics could calm him.

Soon Marc was up as well, wondering why there was so much noise at that hour.

Then Marc started to say something well-intentioned about how there are many children in the world. I knew where he was going with that (there are children who don't have any toys, so Cooper is lucky, etc.) and could tell that Cooper wasn't going to be able to see the forest past the trees at that moment.

Cooper was stuck on the notion that there was a missing toy, and when he gets stuck, watch out. It can take an hour to get him to let go of the thought that is vexing him. A long, painful, exhausting experience that sometimes compels me to eat frozen brownies or cookies afterward just to have something sweet and pleasant (emotional eating, I know, but let's not get into that now!).

I didn't know what to do to stop the meltdown, so I picked up a Speedorz and tried to play with it, and commented that Daddy didn't know how it worked. At that point, Cooper was able to shift his focus and snatched the toy out of my hand to demonstrate how it actually worked (since I obviously didn't know what to do), and then, as if a switch had been flipped, our happy child was back.

We left him in the living room and returned to bed as soon as we could, wondering,

"What the heck was that all about?"

I honestly don't know. I think it's part of Cooper being on the autism spectrum, since he was having trouble controlling his emotions. He was really flexible and accepted that the Star Wars toys would be coming in the mail in a week, and something snapped when he was sleeping -- maybe he had a dream that he'd gotten the other Legends of Chima toy? -- and he woke up snarling.

As parents, the episode was a reminder that, with autism, wherever you go, there you are.

And some mornings are just better than others!

-- by Amy Debra Feldman