Traditions, Transitions, and Timing

There will be no bar mitzvah.

There is, and will continue to be, respect and support for Cooper's interest in learning about Judaism and our culture and values and what it means to be a member of a community.

We're just side-stepping the Jewish tradition of celebrating a child's 13th birthday with a bar, bat, or b'nai mitzvah.

We made this decision as a family out of respect for the challenges Cooper faces due to his learning difficulties. The work required of an individual, including mastery of a number of prayers and Parshahs and so forth, for this event is beyond the scope of what's possible for Cooper to accomplish by this age-based timeframe.

One thing we have learned from watching a child with special needs learn and grow is that Cooper has his own timetable and his own trajectory in life. We have found some wonderful resources at jgateways.org, where pictures accompany transliterated text to give Cooper the visual images and pronunciation in English of prayers in Hebrew. But there is a lot of scaffolded, individualized instruction required for Cooper to even sing a simple Shabbat blessing by himself, and we are in no rush to crank up the expectations for him in this area. School, friends, and activities of daily living already take up a great deal of his and our energy and effort. Learning another language, particularly one that has a different alphabet and sounds, well, foreign, is challenging enough for anyone. Tack on difficulties including auditory processing deficits and the prospect of a formal ceremony in a synagogue in front of a congregation and the expected achievement for Jewish children at a certain age just becomes something that we once again adjust to suit Cooper and his own path and pace.

So no, there was no save-the-date or invitation that got lost in the mail. There was never a date to save.

Instead, there is a boy turning 13 of whom we are proud for just making it to this moment in time, and we will celebrate him reaching that day in our own way. Most likely cake, pizza, video games, and friends will be involved.

L'Chaim!

IEP Management Needs Deserve Respect

Last year, when Cooper was in 5th grade, we decided to do some educational testing (a.k.a. neuropsychological testing if you want to sound all fancy about it). 

I had a sinking feeling there was something we didn't know about him that would explain some of the difficulties he was experiencing in school.

Sure enough, he has dysgraphia, a written expressive disorder. 

It took me a few days to digest this new diagnosis being piled on top of the existing conditions we already knew about, but it made a lot of sense. 

No wonder trying to get him to do any written homework generated so much drama. It wasn't his fault; he wasn't trying to have a meltdown for no reason. 

Writing was just HARD FOR HIM. 

His mind can produce thoughts, but then the work of writing them down onto a piece of paper was another set of obstacles that sometimes overwhelmed him. 

No wonder I was scribing for him night after night. He simply had trouble doing the various tasks to achieve a written product.

Armed with this 17-page report, I met with his team in elementary school and we updated his IEP to include accommodations and modifications to make school more manageable for him.

In September, he started middle school.

New team. Too many teachers for me to count or keep track of, with him in co-taught core classes for most of the day.

So far, so good.

Until I dropped the ball.

(Which one? Hard to tell sometimes.)

At a team meeting I had with Cooper’s middle school teachers recently, one of the teachers asked if Cooper still needed the printout of the Aim and Do Now. 

This management need went into effect two months ago, when he entered middle school and was faced with having to copy down the Aim, Do Now, and nightly homework in each of the seven classes he attends daily. 

That’s in addition to writing his name, the subject, period, teacher’s name, and date on every sheet of paper he does in class, including notes and class work. 

To reduce the amount of unnecessary copying, I've been pre-writing a piece of paper (or sending it through my lovely Brother laser printer -- a much-deserved shout out because Brother makes workhorse printers, IME) that's labeled for each class.

Back to the meeting:

I don’t recall the reason the teacher thought Cooper didn’t need this given to him anymore; it was probably the tenth topic discussed during the 45-minute meeting and it wasn’t anything I had brought up. 

For some reason, I agreed to try it out. 

(Sometimes I think I agree to things at these meetings because someone asks; not because I have thought the matter through and have come to my own decision without feeling put on the spot.)

Naturally it backfired when the teachers didn’t give him the Aim and Do Now in one of his classes yesterday. 

I forgot to prep him that this would be happening. (Sorry, world, I can only handle so much of this at once!)

He started to get into it with the teacher when the teacher said that his mom said it was OK, then he was upset when I picked him up, yada yada.

So I flipped on the laptop and typed out an email to the teachers last night. Subject: Cooper still needs printout of Aim and Do Now

Dear Teacher X,

I forgot to tell Cooper that we wanted to have him try to write down the Aim and Do Now, and apologize if he wasn't happy to learn this from you during class today since he was upset when I picked him up.

As you may know, receiving a printout of the Aim and the Do Now is an accommodation for his dysgraphia that was added to his IEP as a management need after we did educational testing last year.

The purpose of the printout is to reduce the amount of copying as well as the amount of overall writing that he is asked to do during each day, work that is taxing due to his dysgraphia and low muscle tone. In addition, being able to simply read the words rather than having to do the motor planning and processing required to copy them enables him to focus his energy on thinking about the Aim and answering the Do Now -- energy that is lower at the end of the day, and is also being spent managing his attentional difficulties by trying to remain focused.

I also didn't give him a pre-written piece of paper today with labeled headings for the Aim and Do Now.

The combination of factors yielded class notes that are difficult even for him to read, and doesn't strike me as being an example of productive work.

Therefore, since this is already a management need on Cooper’s IEP, I feel it is in Cooper’s best interests to continue to be provided with a printout of the Aim and Do Now on an ongoing basis so that he can use his energy to focus on the material being presented and reduce the amount of additional writing required during class.

I realize this is extra work on your end, and am deeply appreciative of your support in helping Cooper do well in school.

---

I got a nice response back from the teachers just now:

Hi Ms. Mom,

We can see how providing Cooper with a printout of the Aim and the Do Now is especially accommodating for him because of his dysgraphia related needs. We made sure he received one today and can continue to do so until you feel it isn’t necessary.

Thank you for keeping us updated.

---

I know the teachers have good intentions, but in my book this is a permanent management need that enables Cooper to use his limited energy for doing the work in class.

So I will ALWAYS feel that it is necessary.

I wonder if the teachers didn't understand why this particular management need is on Coooper’s IEP and that is why they asked if he still needed the printout. 

As a parent, I’d much rather explain the thinking behind a management need than be asked if it is in fact necessary. 

Obviously, a trained professional thought it was necessary and Cooper’s IEP team in elementary school agreed, otherwise it wouldn’t have been added to Cooper’s IEP.

As Cooper’s advocate, until he is able to effectively advocate for himself, I feel that the management needs on his IEP should remain in place until we or the school does updated neuropsych testing that shows he no longer has ASD, ADHD, or dysgraphia -- since those learning impairments prompted the need for these specific accommodations and management needs.

Am I picking the right battles to fight? 

I don't always know. This one helps reduce my son's anxiety and boosts his self-esteem since it is one less thing for him to worry about.

Of course, now that I'm looking through his binder, I'm wondering if where the printout of the Aim and Do Now is for his other co-taught classes. 

Did the other teachers decide he didn't need the support? Um, it's not exactly the teacher's call if it's in his IEP as a management need (and that's per federal law, folks!).

Did the other teachers think it looked like he seems capable of writing three sentences each day? Well, yes, he CAN write. It just costs him more energy than a kid without these impairments. So where is it most productive for him to spend his energy? Copying stuff or coming up with independent thoughts to respond to the questions posed in the Do Now?

(As for him using a laptop and typing class notes ... working on it, just not there yet!)

I don't get it. Teachers don't start the year off implementing management needs on IEPs verbatim because -- why, exactly? 

They want to see if the student really needs the support? 

What happens when the student does actually need the support? 

How do the teachers know? 

Usually it's when something goes awry -- a bombed quiz or test, incoherent class notes that are useless for doing homework or studying. Something that makes the kid feel stupid or incompetent or otherwise unable to do the work he or she so desperately wants to do.

My two cents -- please just follow the IEP from Day 1! 

It is there for a reason. 

We parents don't just ask IEP teams to put ridiculous supports for the hell of it. 

We are guided by reports from psychologists who specialize in diagnosing and working with learning disabilities -- reports that cost us thousands of dollars, btw. 

Until next time ...

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.