Our Special Kids

Lessons From the Good Book

noreply@blogger.com (Debbie) — Wed, 19 Nov 2008 02:13:00 +0000

M. attends Hebrew school on Tuesday afternoons. Like most fourth graders—this former kid included—he would rather not.

It’s hard enough for some kids (read: boys) to get through a seven-hour school day without tacking on another hour and a half of classroom time, even if it is only once a week. It’s even harder for kids with attentional and anxiety disorders; they’re working pretty hard to keep their act together and at some point, it has to come out. There are times we haven’t even left the school parking lot before M. is falling apart.

When I picked him up at school today he very calmly said that he didn’t want to go to Hebrew school. I asked why he felt that way and he didn’t have much of an answer other than, “I just want to go home and relax.” He actually confessed that he could go—meaning, he wouldn’t freak out on the way there and throw his shoes at my head while I was driving—but I wasn’t sure I should force him. The past few days had been extremely rough and my primary goal had become to keep M. calm. I didn’t want to push my luck, so I drove home.

M. went into the kitchen and found on the table some books we had bought for his teachers at the school book fair. He picked up Diary of a Wimpy Kid: Rodrick Rules, looked it over, and took a seat at the table. He started reading. You have to understand that this is unusual; although M. has many books and enjoys reading, it’s not something he’ll voluntarily do during the day. So he kept reading and I kept my mouth shut. I knew a good thing when I saw it.

I decided to pick up a magazine and join him at the table. I thought if I modeled back the behavior, he would read for a longer period of time. It felt as though I was in my own version of Gorillas in the Mist; except it wasn’t the mountain gorillas of the Rwandan jungle I was trying to blend in with and understand.

After a while, M. asked me to read to him, which I did. In total, he spent about an hour happily—and calmly—reading.

Given how challenging M. has been of late, and how chaotic our household has become, this moment of normalcy was priceless. When you live with a child whose mood—and aggression—flips quickly and unpredictably…these moments are, well… a blessing.

And a far more powerful one than any he might have learned at Hebrew school.

Iced Tears

noreply@blogger.com (Debbie) — Sat, 26 Jan 2008 19:44:00 +0000

It couldn’t have been the most exciting trip to the mall for an eight-year-old boy.

We were there to help Dave’s sister and our future brother-in-law select their wedding invitations. Max was very patient. He drew pictures with Dave. And he and Ari took up residence underneath the table and played their Game Boys side by side.

When we finished, the four of us headed to a restaurant in the mall. And although it was now about 7 o’clock and we had a twenty-minute wait, Max took a seat on the floor and quietly waited. Once at our table, he and Ari colored on their children’s menus and placed their own orders with the waitress.

As I sipped my iced tea and looked at this well-mannered, patient boy, I had to fight back tears.

They weren’t tears of pride as one might consider. I was crying—rather, trying not to cry--for all those days when Max was none of the things he was today. When you live with a child who has behavioral issues that include hitting, talking back and just an overall obnoxious attitude, you come to understand what you’re in for. You certainly don’t like it. But you learn how to best manage it and you accept it…well, as much as one can without throttling said child.

But today, when Max was so perfectly behaved the woman at the stationary store remarked how well mannered and patient he and Ari were, you cry. You cry that there aren’t more days like today where your family can go to a restaurant and not worry that your son will freak out because he has to wait. You cry for all those difficult days. You cry that today, as nice as it has been, may not happen again for a while.

This outing was a reminder of how things could be. And how they aren’t. And probably never will.

In the Mooooood for a Laugh?

noreply@blogger.com (Debbie) — Mon, 05 Nov 2007 03:35:00 +0000

Ari and I were cozy under the blankets in my bed as we read a book before bedtime. Max, who typically reads on his own (Something new that started when he started third grade. Yay!) was sleepy and joined us for a cuddle.

We were in the middle of a Freddie Fernortner: Fearless First Grader book. In this one entitled A Haunting We Will Go, the three first grade protagonists were lurking by a house reputed to be haunted. They heard a noise and ran away and one of them, Darla, fell and got her pants muddy. She said, “My mom is going to have a cow when she sees how dirty my pants are!”

I was curious to know if the kids understood, given the context of the story, what it meant that the mom was going to “have a cow.” So I asked. Ari said no. Max said, “That her mom is going to have to wash her pants.”

I was about to offer the correct explanation when he elaborated.

“In milk.”

I hadn’t laughed so hard in a long time.

Aftermath of the Storm

noreply@blogger.com (Debbie) — Mon, 15 Oct 2007 00:08:00 +0000

I don’t know which was worse.

The venom-spewing, arm-flailing, world-class tantrum Max threw the other day, complete with destruction of property, threats of violence, and an attitude so big I don’t know how it fits inside his eight-year-old body. Or, the sobbing wreck of a child who sought me later on, uttering apologies and hugging me tightly, as if holding onto me were an attempt to hold on to himself.

“I’m a monster,” he said. “I’m a terrible kid.”

It’s one thing for a parent to think their child is a monster after a particularly bad moment—show me a parent who has never thought this and I’ll show you a parent who is lying—it’s quite another when the thoughts are coming from your own child. When I have those thoughts, they are fleeting. They blow over as soon as Max’s tantrum does.

But when Max has those thoughts, I worry about them taking root. Becoming permanent residents—unwelcome guests--within a brain already plagued by impulsivity and compulsiveness. There’s no room at the inn for self-doubt and low self-esteem, too.

I try, in vain, to explain to Max the difference between being “a bad kid” and making a bad choice. But no rationalization, no soothing, nothing I do convinces him that he really is a good kid. A good kid with a neurologically atypical brain.

We cuddle in my bed as I rub his back and offer reassurances I fear will be forgotten the next time a storm comes around. Max falls asleep, and I know tomorrow he will wake up refreshed and happy, without a hint of the self-loathing he demonstrated tonight.

Much as I hate his outbursts, it’s a piece of cake to listen to Max call me names compared to hearing the horrible things he says about himself.

Scooby Dooby Don't

noreply@blogger.com (Debbie) — Sat, 29 Sep 2007 18:05:00 +0000

I wasn’t the least bit surprised to come out of the shower and find Max and Ari in front of the TV, watching cartoons.

The same cannot be said for what came out of one of the cartoon character’s mouths.

Scooby Doo and Shaggy were (surprise) trying to get away from a creature. This time they were on a snow-covered mountain. And what I heard Shaggy say froze me in my tracks.

“We’ve got to get away from this bipolar polar bear,” he said.

Yep, you heard that right: bipolar polar bear.

I would like to know what purpose this particular rhyme served—other than offending people with and parents of children with bipolar disorder. I fit neither category and I was most definitely offended.

I know cartoon creators are cognizant of the adults that may be watching along with their kids. And I certainly appreciate when they include a joke or reference intended for someone in my age bracket. But is that what they had in mind when someone greenlighted “bipolar polar bear?”

As the mother of a most curious boy, who has his own set of behavioral issues and questions everything he sees and hears, I was most grateful that this line of dialogue went unnoticed. I didn’t want to have to attempt an explanation of the disorder that my eight-year-old would understand. I have enough trouble getting him to understand his own diagnoses without having to go through the entire DSM.

Our two kids have a laundry list of issues. I’m typically the first to try to find the humor in what is usually a very trying situation.

But I found nothing funny in the cheap shot and inappropriate reference trying to pass for a kid’s joke.

The Decline of the Easy Child

noreply@blogger.com (Debbie) — Mon, 20 Aug 2007 17:43:00 +0000

You know you’re really a special needs parent when the child psychologist hands you not one, but two sets of questionnaires for you to fill out.

One for each child.

Ari has always been my easy child. Anyone reading this blog certainly knows that, just by comparing the number of entries about Max to those of his sister. He simply produces far more material.

But I have been having concerns about Ari for some time now. Even though her apraxia has been considered resolved, she’s been continuing speech therapy to help with other issues—working memory, sequencing, word retrieval, processing. As fabulous as her speech therapist is, Ari continues to struggle with these areas.

She’s also been showing signs of attentional problems: she’s easily distracted, doesn’t remember what I ask of her, and has required no less than three trips to the emergency room in the past year. Her injuries—goose egg from falling on sidewalk, stitches from hitting head on playground structure, bruised finger (thankfully not broken) from closing our back door on it—are not the result of clumsiness, but rather, her lack of awareness of her immediate surroundings.

Her issues are subtle. Everyone who knows Ari, including teachers and parents from school, just love her personality. My concern, however, is that as she gets older, her positive qualities will be perceived differently. And soon my outspoken, confident, social, energetic child will be described as intrusive, bossy, overly talkative, and exhausting.

Although Max is who brought us to Dr. I. in the first place—some three years ago—it is now Ari who gets discussed in his office. And as he hands me the parent history forms to fill out, it’s hard not to think, “Here we go again.” It’s hard not to mourn—just the littlest bit—the loss of the easy path you had hoped at least one of your kids would travel.

Trying to Cool Off

noreply@blogger.com (Debbie) — Sun, 05 Aug 2007 17:26:00 +0000

Max asked Dave to help him make some origami. Dave had been in the middle of his own paper folding—he was reading the newspaper—so he told Max he would be able to help him in thirty minutes. Considered a reasonable response by most, but not Max, who quickly got bent out of shape.

It’s hard to describe the screaming/moaning/grunting that often results when Max doesn’t get his way. But I’ll say this—it’s not pretty.

Unable to wait the half an hour, Max came to me, not asking for help, but demanding it.

“Max, I will help you, but not when you’re screaming,” I told him. “When you can calm down, I’ll help.”

“I AM CALM,” he bellowed back.

Max continued to carry on, hitting me, yelling and calling me names. I continued to remain calm. (NOTE: Don’t be too impressed. Sometimes I yell back.)

“Max, this isn’t working. You’re not getting what you want this way. You need to stop screaming,” I said. “The whole neighborhood can hear you.”

“No they can’t,” he countered. “The windows are closed.”

“Max,” I said, “the windows are open.”

Still not believing me, Max walked over to the window. Discovering that it was in fact open, he closed it. That was his solution to our problem of his out-of-control screaming-—to close the windows so the neighbors wouldn’t hear.

The muffled sound that followed? That was Max trying to get me to stop laughing.

Something to Chew On

noreply@blogger.com (Debbie) — Wed, 23 May 2007 02:55:00 +0000

“Can I have some gummies?”

Ari made this request as she and I were out grocery shopping. I admit, it’s hard for any kid to resist the fruit snacks—especially since the shelves featuring the faces of Cinderella, Jack Sparrow, Hello Kitty and other fictitious friends looked like they belonged in Toys R Us.

(Just to give you an idea of her level of expectations, Ari used to call the store Toys For Us.)

I told Ari no. And about ten seconds later she asked, “Can I have some gummies?”

I explained to her that I was saying no because the snack was bad for her teeth and we could choose something else.

“Can I have some gummies?” she asked again.

OK, now I was getting angry. “Ari, I’ve already answered your question,” I told her. “Please don’t ask me again.” Did that stop her from—

“Can I have some gummies?”

I kid you not—before I could even push the cart out of the aisle she had asked for the gummies four times.

The thing that concerned me wasn’t so much the frequency of the request—but the fact that she never rephrased it. Another child would have tried a different tactic such as, “Please can I have some gummis” or “Why can’t I have gummies?” That would have been perfectly normal behavior for a kid. But the fact that she simply repeated the same request made me suspect something wasn’t right.

I knew her hearing was fine—it was checked when she was two years old. But because of the way she’s always mixed up her words (“What that is?”) or left words out of her sentences (“Where daddy going?”) I’ve long wondered if there was some kind of processing problem. Today, at the supermarket, seemed to be one more indication that something was wrong.

Well, besides the Care Bears fruit snacks, that is.

Kung Pao Confusion

noreply@blogger.com (Debbie) — Mon, 07 May 2007 03:30:00 +0000

It was somewhere between the won ton soup and the kung pao chicken when I knew something wasn’t right.

My parents were visiting from New York and we were all at the kitchen table eating take-out Chinese for dinner. Ari leaned over and whispered in my ear, “I don’t remember their names.”

She was referring to my parents, her grandparents, who she speaks to by phone, receives packages from, and visits with on a regular basis. Her question left me anxious and disturbed—much the way I imagine she felt at not being able to retrieve their names. But I leaned over and whispered back in her ear, “Grandma Tommye and Grandpa Sandy.” Satisfied, she said, “Oh, OK,” and went back to eating her spring roll.

If Ari had phrased her question differently, if she had instead said, “I forget. Are they your parents or dad’s parents?” I wouldn’t have been concerned; kids get that kind of thing mixed up. But there was something about how she asked it, that she felt self-conscious about it, that made me concerned.

When I shared this story with my friend Kim, she suggested that maybe Ari had ADD. I started laughing. “Are you manic?” she asked. “Yes,” I said. “I even have the title of my next book all picked out—Me and the ADD Three.”

I had previously spoken with Diane, Ari’s speech therapist, about my concern about Ari’s social language skills. She was constantly interrupting people. And she had a hard time waiting for someone to respond to her. I referred to Ari as a “verbal bulldozer” and realized that I used this same phrase at one time to describe Max.

Back when Ari was diagnosed with apraxia, Dave and I weren’t too surprised to see her following in Max’s verbal footsteps. Now I was faced with the possibility that she might share his other challenges, too.

What does Ari’s future hold? I don’t yet know. The answer wasn’t in the fortune cookies, that’s for sure.

Mayo Clinic

noreply@blogger.com (Debbie) — Wed, 25 Apr 2007 22:51:00 +0000

Here’s Max, upon hearing my explanation of what goes into a chicken salad sandwich:

“I didn’t know mayonnaise was for eating. I thought it was for putting in your hair for lice.”

I don’t know which is the sadder commentary—that he’s never seen me make chicken or tuna salad because, more than not, I buy it pre-made at the supermarket, or that we’ve had too much experience with lice in the past two years.

Rude Awakening

noreply@blogger.com (Debbie) — Wed, 07 Jun 2006 23:45:00 +0000

Forty-five minutes.

Max woke up screaming this morning and pretty much continued, non-stop, for forty-five minutes.

I timed him. I know.

He was screaming because he slept later than usual. Typically he’s up around 6 and gets at least an hour to himself to watch TV, play and hang out before Ari gets up to join him and cast her vote for which cartoon to watch.

He became distraught when I told him it was 6:45, insisting that it was “too late” and that there was no way he could go to school. I thought he was upset that he missed whatever show he likes to watch at the ungodly hour of 6 am. It wouldn’t have been the first time he called me “an idiot” for “making” him miss his shows. One could see how it was my fault he missed the shows as I was, oddly enough, sleeping at 6am.

But it wasn’t about that.

I think the fact that it’s light out earlier throws him off—in colder months he’s used to waking up while it’s still pitch black out. So when he sees the sun is out he figures it’s “too late.”

Too late for what?

My theory is that the simple act of waking up at a different time than usual doesn’t sit well with his compulsive tendencies. Things have to be done a certain way. When he and I walk from the bedrooms to the family room every morning, he insists on holding my hand. My left hand. Only my left hand. It’s not enough for us to walk next to each other. This has nothing to do with Max wanting to feel close to me; this is about chemical imbalances and obsessive-compulsive behaviors.

Forty-five minutes. He alternated between general moaning and berating me for letting him sleep too late and ruining everything. His whole body writhed as if he was overcome with physical pain.

Nothing I said or did had any affect on calming him. We’ve been dealing with these irrational moments long enough for me to know—but not always have the strength to do so—to just step back and let him scream it out. Talking to him only prolongs the episode. Threats of losing his Game Cube exacerbate the situation. There’s really nothing else to do but let him scream.

So I did.

For forty-five minutes.

All Good Things...

noreply@blogger.com (Debbie) — Tue, 09 May 2006 00:44:00 +0000

The Tenex did a great job of managing Max’s impulsivity and putting him on an even keel.

And then, it didn’t.

Max’s behavior the past week or so has not been good. He’s been highly reactive, extremely irrational and more than once over the weekend I wondered if he required a trip to the emergency room for sedation.

Max’s psychologist, Dr. I., wonders if he’s experiencing side effects from the Tenex. Nothing in the literature suggests Tenex could cause such severe outbursts. Max’s psychiatrist doesn’t think it’s the Tenex. Here’s my theory: most of Max’s outbursts can be traced to some compulsive need of his. I think now that the Tenex has managed his impulsivity, we’re seeing more problems with compulsion. It’s not that the compulsions are new—they’ve been here all along—they’ve just taken a back seat to Max’s aggression and impulsivity.

Dr. I. suggests I track Max’s behavior for one weekend so he and the psychiatrist can see exactly what they’re dealing with before we consider adding another medication. Here, a few highlights from what is easily the worst weekend we’ve ever had:

Friday
7-9pm

Max is yelling at Dave and Ari to stop talking because he can’t hear the video they’re all watching. Max is louder than the two of them combined.

Saturday
All day

Max cannot walk from one room to the next without knocking things off the kitchen counter, tipping over bags and knocking pictures off walls. He is constantly throwing toys across the room. When I tell him he needs to pick these things up he tells me “later” because “I’m too mad now.” He’s mad?

6:45-8pm

Went to dinner to one of those Chinese buffet places. Every time Max came with me to get food he’d touch all the tables between ours and the food. I kept asking him to stop but he didn’t. Or rather, he couldn’t.

Sunday
6:45-7:05am

Max wakes up screaming for me to take him downstairs. He’s upset that it’s after 6 am. “You idiot. I missed 2 hours,” he’s screaming at me. “You’re wasting my time. It’s light out already. It’s too late to play.” I told him it wasn’t time to get dressed yet, that he had time to play and watch TV. I gave him milk and asked what else I could do. He didn’t like his TV choices and he wouldn’t pick a video. He was very angry and nasty.

Whether or not the Tenex is exacerbating Max’s behavior isn’t clear. But one thing is: something has to change.

Tics on TV

noreply@blogger.com (Debbie) — Fri, 21 Apr 2006 20:45:00 +0000

Although the Tenex has done a great job of calming Max’s tics, save for the occasional head shaking, I still thought it was important to have him watch an HBO special than ran some months ago called I Have Tourette’s But Tourette’s Doesn’t Have Me.

Dave was concerned about making Max aware of yet another label; I thought it was more important for him to see that there are other kids just like him.

So we sat down to watch it. I explained that the movements his body makes sometimes are called tics and that the kids in this show had tics, too. He watched, intently, and when he saw a kid make a movement with his arms he said, “Hey, he does what I do!” There was such excitement in his voice, such a positive feeling of identifying with another kid, that you would have thought his excitement was over finding a fellow Star Wars fan.

He wasn’t able to sit through the whole thing, but that’s OK. So many times he’s expressed that he’s the “worst first grader” in the whole school or “whoever made me this way is dumb.” He’s more and more aware of his differences and challenges and it upsets him. But in those few minutes of watching this show, he found camaraderie with the children on the TV screen. And, hopefully, a bit of self-acceptance.

Tenex For Tics

noreply@blogger.com (Debbie) — Thu, 20 Apr 2006 01:18:00 +0000

Max is now taking a blood pressure medication called Tenex. Because it’s done such an amazing job of reducing both his tics and impulsivity, it’s actually succeeded in its originally intended purpose of lowering blood pressure.

Mine.

Since starting him on the new meds I’ve been successful at things that were once nearly impossible: getting Max to turn off his GameCube, eat something besides waffles for breakfast, and sit down to do homework for five minutes.

The highlight was the day I took him to Chuck E. Cheese and Toys R Us. I knew it was a risky move as both destinations are places where conflict is inevitable, whether it’s Max asking for yet more tokens, complaining that he doesn’t have enough tickets for a good prize, or demanding half the toy store’s inventory. But he was so surprisingly cooperative, polite and compliant that as we sat eating our lunch I couldn’t help but think: “This is what it’s like to have a normal child.” And then I corrected myself: “A neurotypical child.”

The Tenex has also eliminated the tics that were causing Max such distress. He seems to have acquired a new one in their absence – a head shaking thing – but it’s not nearly as severe or frequent its predecessors.

He still has his moments, of course. But it’s truly as if he’s a different child. We’re seeing a much bigger improvement than we did when he was taking stimulant medication.

His psychiatrist, Dr. K., indicated that Max may need additional medication – another round of stimulants to help him focus and an antidepressant to help with his anxiety and compulsive behaviors. The thought of him requiring three medications is overwhelming and frightening. I have no idea on how I’ll sell Dave on the idea considering how uncomfortable he is with Max on anything.

I’ll worry about it when the time comes. In the meantime, I’m just grateful for how much more controlled Max is these days. There are fewer outbursts and he’s much more compliant. the atmosphere in our house is much more relaxed.

That one small blood pressure pill has brought a calm to our whole family.

Tic...Tic...Tic...Kaboom

noreply@blogger.com (Debbie) — Sun, 16 Apr 2006 23:04:00 +0000

Four years.

That’s how long Max has been ticcing.

Had I been asked to guess, I would have said it was only going on for two years. Because they’re intermittent, Max will go many months without a single tic. But soon a new one emerges and becomes part of our everyday life, an unwanted visitor moving in and taking up residence in Max’s small body. Had I not consulted my journal I never would have known he’s been doing it for most of his life.

The tics have always taken a supporting role to the cast of behaviors and issues that are often in the spotlight. The eye blinks, hand movements and head jerks were always of little consequence compared to Max’s impulsivity, sensory issues, inattentiveness and basic lack of control over his executive function. Although they were sometimes distracting—and yes, I’ll dare say sometimes annoying—to us--they were never an issue for Max. It was one small saving grace given that just about everything else was an issue for Max.

But like the ever-evolving tics themselves, this has all changed.

I had picked Max up at school and within a minute after pulling out of the parking lot he was in distress. “My hands are bothering me,” he said, fighting the panic that was rising up. I turned around and saw his hands moving fast and furiously in a movement that looked as if Max was trying to open two imaginary doorknobs. He had never demonstrated this particular tic before; nor had he ever ticced with such intensity.

What was so frightening to me wasn’t just that Max had absolutely no control over his body at that moment—but that it frightened him, too.

“Do you think you can stop?” I asked.

“No,” he said.

“It’s OK Max,” I said, trying in vain to offer reassurance. “We’re going to the doctor right now.”

It was after 4 p.m. on a Friday and I still had to pick up Ari, but somehow the pieces fell into place and we got an appointment with our pediatrician. I gave Dr. N. the rundown and was surprised when she said she wanted to do a throat culture and check for strep. Max had shown no symptoms of strep or any physical illness for that matter, save his twitching hands.

And then Dr. N. reminded me of something I had read about years ago: PANDAS.

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection. I know, not nearly as cute as the furry black and white variety. It basically refers to how some kids with OCD or tics can have their symptoms worsened by strep. Treat the strep and things improve.
Dr. N. wrote us a prescription for amoxicillin and suggested we follow up with Max’s neurologist.

I suppose this whole ordeal might have been all the more stressful if we didn’t already have a pediatric neurologist for Max. (Good thing we suspected petit mal seizures back when he was two-and-a-half; save us the trouble of looking for someone now.) Still, it was upsetting to see Max so completely out of control of his body’s movements. It’s overwhelming to try to keep up with the ever-changing neurobiological snafus taking place in Max’s brain. I can’t even imagine what it feels like for Max.

It seems every time we solve one problem, another one emerges. Max’s primary diagnosis may be ADHD, but there are so many related issues—anxiety, compulsions, tics, sensory issues--that you could probably flip to any page in the DSM-IV and find something he’s experienced.

Our goal for so long has been to improve Max’s impulsivity and focus. But with the tics taking center stage, it’s my focus that could use a little help. Which of the many neurological and psychiatric issues do I address first? I feel like I’m doing nothing but researching online and making appointments with mental health professionals. I’m moving as fast as I can to bring Max—and our family—some relief.

Why do I feel in such a rush? Max’s tic, tic, ticcing is not unlike the ticking of a bomb. If I can’t make it stop, you can damn well be sure there will be an explosion.

And it’ll be me who will have to pick up the pieces.

Schedules, Support and Flying Solo

noreply@blogger.com (Debbie) — Sat, 01 Apr 2006 04:52:00 +0000

“I can always tell when you see Dr. I. or Diane.”

Dave shares this observation with me after spying the organic turkey, prepared salmon burgers and fresh hummus in the fridge—purchases from Whole Foods, the organic market located just one mile from both Max’s psychologist and speech therapist.

“You should know when I see them because you should know the schedule,” I said. “You walked right into that one.”

I have no complaints about being the parent to take charge of the doctor appointments, therapy schedule, school meetings and such. I have a more flexible work schedule and, truth be told, I’m a control freak; even if Dave offered to help out with this stuff, I wouldn’t trust him to ask the right questions or give me a full report. All I ask is that he keep up with our comings and goings, ask about our appointments from time to time and show interest in what we’re doing.

I know this is a common scenario in many families—with or without special needs kids. One parent tends to take on more kid-related duties. That’s just the way things work out. And that’s fine. But it’s not like we’re divying up who does the dishes and who does the laundry. Hell, Dave’s more likely to ask me if I picked up the dry cleaning than how our latest appointment with Max’s shrink went.

I don’t want to beat him up (too much). I know there are plenty of other families with similar arrangements and equally frustrated spouses. It’s just that taking care of kids with issues is physically exhausting and mentally draining. My brain is constantly trying to process new studies, evaluate the latest report from the newest doctor we’ve consulted, read—and retain—the latest book on ADHD, and determine if the new medication we’re trying is working or not. It’s too many balls to juggle on my own.

I just want to know Dave’s there to catch them—and me—when we fall.

Headache. Relief.

noreply@blogger.com (Debbie) — Wed, 22 Mar 2006 09:40:00 +0000

Forget stimulant medication, occupational therapy, fidget toys, physical exercise, psychologist visits, fish oil pills or dietary changes. I’ve found the one thing that totally keeps Max’s ADHD under control and makes him very easy to live with:

The flu.

It kept him home from school last Friday. More than that, it kept him calm, quiet, polite, agreeable – and lying on the couch for the entire day. Granted, he had a fever. And a headache. Overall, he just didn’t feel well.

I’m not saying I wish my child to be in pain or discomfort. But it was interesting to note the one benefit to an otherwise typically unpleasant experience.

Think I’m a bad mom for finding relief in Max’s distress? Don’t worry – by the next day the worst of his symptoms – the fever, headache, chills, body aches – had been passed on to me.

A Different Kind of Need

noreply@blogger.com (Debbie) — Thu, 16 Mar 2006 23:37:00 +0000

The first time Ari started wheezing we went to our pediatrician, got a couple of prescriptions and started using a nebulizer. Within a week or two she was fine and we chalked it up to the harsh winter weather.

The second time Ari had some wheezing it was a year later. Again, it seemed, it was triggered by the extreme cold. And again we treated her with inhalers and nebulizer treatments and it quickly became a thing of the past.

The third time it started, it was September –- we could no longer blame the climate. We could, however, blame me. I have asthma. So we knew from the beginning that both kids were at risk of developing it.

This time I took Ari to my allergist. They strongly suggested we do some allergy testing – which meant covering her back with droplets of different allergens and poking them. It’s called a skin prick test, I suppose, because when you’re lying on the table getting poked and scratched by dozens of needles one has the strong urge to call the doctor a prick. I know, I’ve had it done myself.

For an adult, it’s unpleasant. But for a four-and-a-half year old kid, it’s painful. As it is for her thirty-eight year old mom to have to stand by and watch someone hurt her child.

I held Ari’s hand and talked to her through her tears. I made promises of treats and handed her a new Polly Pocket doll and squishy hand and lollipop once the testing was over. She really was a trooper.

The whole experience made me think of all the parents whose children have a physical disability or medical condition and the pain they must experience as a matter of routine. Max’s difficulties had certainly put us through the ringer over the years, but the routine pain for us was strictly emotional. Sure, Max underwent his share of tests, but the only poking he was subjected to was limited to his brain.

Managing Ari’s asthma is pretty easy, especially compared to managing Max’s everything else. Still, with the formal diagnosis came the realization that we have yet one more thing to concern ourselves with. One more thing that needs close monitoring. One more thing that calls for daily medication. One more thing fighting for space in my already crowded and exhausted brain.

One more special need.

Dirty Joke

noreply@blogger.com (Debbie) — Wed, 01 Mar 2006 03:47:00 +0000

We’ve just left Max’s speech therapy session with Miss D and are heading to the car. Max is in possession of a squishy, purple robot, retrieved from Miss D’s treasure chest for a good day’s work. Max is throwing it against walls, against my dirty car, and dropping it on the ground. Then he puts it in his mouth.

Me: Max! That’s dirty! It’s been on the car and on the ground. There is nothing dirtier you could have put in your mouth.

(Wait for it.)

Max: There’s mud.

Max, Ari and I laughed for a good mile or two. You know, it’s joyous moments like these when I realize we don’t have nearly enough of them.

I've Been Tagged

noreply@blogger.com (Debbie) — Wed, 22 Feb 2006 18:54:00 +0000

I’ve seen the other kids playing for some time now and today I was invited to join them.

My fellow writer Candy Harrington (whose website www.emerginghorizons.com is a great resource for travelers with mobility disabilities) has “tagged” me in a blogger’s game called Barrierfreiheit Meme.
I answer a list of questions here on my blog and then invite four other bloggers to play. The idea is for you, my dear readers, to learn a bit more about me and visit some blogs that you might not have known about otherwise. So, here we go…

Four Jobs In My Life
Order taker at Wendy’s (I was 14)
Library clerk at the university math library (If you knew how poorly I did in high school math, you’d know how funny this was.)
Advertising copywriter (I wrote ads for Oriental rugs, lottery tickets and photo processing services. It wasn’t Nike, but for a long time, I really loved it.)
Magazine editor (The job I loved – and left to take care of my, at the time, newly diagnosed son.)

Four Films I Could Watch Over and Over
The Shawshank Redemption
Sixteen Candles/Valley Girl/Breakfast Club (Yes, I’m trapped in the 80s.)
The Adventures of Priscilla, Queen of the Desert
Shrek (1 and 2)

Four Places I Have Lived
Brooklyn, New York
Ann Arbor, Michigan
Dallas, Texas
Farmington, Michigan

Four TV Series I Like
Desperate Housewives
Grey’s Anatomy
Lost
American Idol

Four Places I’ve Been on Vacation
Auckland, New Zealand
Torremolinos, Spain
Florence, Italy
Walt Disney World, Florida

Four Foods I Love
Chocolate ice cream
Any Asian food
New York pizza
Pasta

Four Websites I Visit Daily
www.freelancesuccess.com
www.asja.org
www.diaperstodeadlines.typepad.com
www.searchengineguide.com/laycock

Four Places I’d Rather Be Right Now
On my massage therapist’s table
Done with writing my book
At a lower weight
In my family room watching American Idol and eating chocolate ice cream

Four Bloggers Who Should Play
Terri Mauro
www.mamatude.blogspot.com
Don’t know her name, but love her blog
www.momnos.blogspot.com
Jack Smynde
www.portraitoftheautistasayoungman.blogspot.com
Joy Lian
www.meshsf.com/blogs/restaurantwhore.html

Peds Need to Get With the Alternative Program

noreply@blogger.com (Debbie) — Wed, 15 Feb 2006 06:18:00 +0000

I came home from the pediatrician’s office with with a container of probiotics in my purse, plans to bring Max back for food sensitivity testing and a referral to a homeopath for craniosacral therapy and Neuro-Emotional techniques. And as I filled Dave in our appointment with this new doctor I commented that our regular pediatrician would never have made any of these recommendations.

“That’s not their job,” he offered.

“Yes, it is,” I said.

At least, it should be.

I don’t expect every pediatric practice to offer acupuncture or craniosacral therapy or to suggest trying fish oil supplements for mood management. But considering the staggering number of children with special needs and the ever widening array of possible treatments, shouldn’t pediatricians at least be able to make us aware of these options?

How much more press does autism or ADHD medications have to get before the mainstream treatment net is cast wider? Isn’t six million children in this country with speech and language disorders enough to merit more education on the part of the medical community?

I am certainly thrilled to have found this new doctor and am eager to see what improvements we may find with the new treatments. But I am somewhat disappointed that I couldn’t turn to our own pediatrician for help.

But I can’t say that I’m surprised.

According to a survey conducted by the American Academy of Pediatrics in 2001, while 94% of respondents agreed that pediatricians should inquire about a child’s development, 80% cited time limitation as a barrier to doing so. Fifty-five percent felt they received inadequate reimbursement from insurance companies and 46% had the nerve to claim “unfamiliarity with CPT codes” as a reason for not doing developmental assessments during well-child visits. You know what a CPT code is? It’s one of those numbers on that piece of paper you take up front to cash out at your doctor’s office; each medical procedure is assigned one.

To say you can’t do a developmental assessment because you don’t understand which code to use is akin to not submitting your tax papers for a refund because you couldn’t find a stamp. It doesn’t make sense.

If pediatricians can’t be bothered to even screen for developmental problems, how can we expect them to know how to treat them?

Max will now be getting double the fish oil he took in the past. I’ll mix in half a teaspoon of probiotics in his milk every morning. And next week we’ll talk about how craniosacral therapy might help manage his moodiness, agitation and compulsive behaviors. I don’t know if any of it will work…we’re just following doctor’s orders.

Regardless of what Max’s medical regiment will producee, one thing is for sure – following doctor’s orders will certainly be easier than it was to find a doctor who could issue them.

Frustrations of a First Grader's Mom

noreply@blogger.com (Debbie) — Thu, 26 Jan 2006 01:41:00 +0000

I have always liked – really liked – Max’s first grade teacher. A few days before the first day of school back in the fall, I went to meet with Mrs. G., to fill her in on Max. Basically, I painted a worse case scenario.

Because Max’s IEP is only for speech, I wanted to make sure Mrs. G. was aware of Max’s other issues – ADHD, sensory issues, compulsive behaviors, occasional tics and a perfectionistic streak that often renders him incapable of doing his work – should the need arise for special accommodations to be made. I had no idea what – if anything – Max might need, as he did very well in kindergarten the year before. Max’s schedule then was three full days and two half days. And I could tell from the work he brought home from his morning class (perfect) and afternoon class (riddled with errors) that he ran out of steam toward the end of the day. Now that he was starting first grade, I wasn’t sure how five full days would affect him. And rather than wait for him to start struggling, I wanted to head it off at the pass.

She appreciated my honesty and I was grateful to have been so well received. She told me about some of the things she does in her class – for all the students – to help them do their best work: morning stretches, walks around the classroom between lessons and teaching the kids to use pressure points on their ears to “wake up their brains,” as Max would soon describe to me. I left this initial meeting feeling Max was in wonderful hands.

In all these months, whenever I had a concern that one of Max’s many “issues” were impacting him in the classroom, Mrs. G. simply attributed it to typical first grade stuff. When he tested far below the expected reading level, I explained that kids with apraxia may have trouble learning to read. She said there were other kids in the class who also needed help and she felt strongly that with extra help he would catch up. When I expressed my concern that the errors on Max’s math sheets were due not to a lack of understanding of the work but to his impulsivity and distractibility, she assured me that all the kids will accidentally add their numbers when the problem called for subtraction.

Mrs. G. never saw Max as anyone other than a typical first grader. He followed the rules. He did all his work. He behaved. There were other children in the class who required more attention – two of them, both non-communicative, shared a parapro. Another boy was always out of his seat and required constant redirection. Compared to these children, Max didn’t stand out. I thought this was a good thing.

Until today.

I went to talk with her about the whole sticker/lunch thing, as well as to discuss some ways we could Max more comfortable in the classroom since he had expressed that he becomes restless and agitated. (My words, not his.) When I told Mrs. G. that Max was distraught not to have had lunch with her she let me know that Max wasn’t the only one who earned the lunch but didn’t have it due to a missing sticker. She explained that from an administrative perspective, she couldn’t have a bunch of kids asking her to check her records to see if they had earned a sticker from previous weeks. OK, this I understand.

“The lunch is really just an added bonus,” she said. “The real reward is the sticker the kids earn every Friday for showing good behavior all week.”

This I did not understand.

I told her that I was sure Max didn’t see it this way. And when I thought it over later, I felt even more strongly that this made no sense. The kids who behave, especially those for whom it comes easily, I’m sure, fully expect that sticker every Friday. I know I would have were it me. I’d be surprised not to get a sticker.
So of course the lunch is the reward.

She explained that she wanted to kids to learn how to be responsible for their papers and how to stay organized. I agreed these were worthy goals. But I reminded her of Max’s limitations in these areas – he has ADHD, after all. She still couldn’t see why he might need help managing his papers. And then, the clincher:

“Well, I’m sure this will help Max try harder next time,” she said.

And this is when I burst into tears.

The only thing Max “learned” from this lesson was that he did the hard part – he kept his act together for ten weeks. He listened, he participated, he sat in his goddamn seat for far longer than any six year old should be expected to, let alone a child with ADHD, and yet, in the end, he was punished.

I felt like a fool for crying and Mrs. G. felt bad. But she still missed all the points I was trying to make.

Then we started talking about helping Max feel less fidgety. I told her I was going to bring in a seat cushion for him that’s designed to give a child sensory input just by moving around in his seat. She knew what I was talking about as the school had the same cushions for some of the other students. It seemed Mrs. G. understood the concept of sensory input and for this I was relieved. But not for long.

“They also make these pencil toppers that are supposed to be for fidgeting,” I started to explain. And then I got a look that said, “Uh, I don’t think so.”

I’m sure she was concerned about it being a possible distraction for the other kids. But that’s not what she said. What she did say demonstrated to me that she did not in fact understand sensory input.

“Well, I wouldn’t want Max to feel like he was being rewarded,” she said.

Her ignorance stabbed me in the gut.

I’m sure the way she perceived the idea of a fidget toy was that a child would take it out when he was having trouble doing his work and therefore was being “rewarded” for not completing a task. She didn’t understand that for a kid like Max, doing two sides of a math sheet in one sitting is too much. He can’t focus that long. He gets distracted. A fidget toy might actually keep him on track.

And to think I was going to suggest Max keep Starbursts in his desk. No way she would have gone for that.

In a way, I should consider myself lucky. Despite his quirks and challenges, Max has done very well in school. It took getting to the second half of first grade for us to come up against some issues that require our attention and possibly, some accommodations.

Unfortunately, we seem to have come up against a brick wall as well.

Mr. T.

noreply@blogger.com (Debbie) — Tue, 24 Jan 2006 22:23:00 +0000

I don’t even remember the miniscule offense that got Max all riled up but here’s the exchange that left me puzzled:

Max: I have to say the “t” word.

Me: What’s the “t” word?

Max: You know!!!

Max showed surprising restraint and alas, I never learned what the “t” word was. When I recounted the story to Dave he guessed it was “turd.” If anyone would care to enlighten me, please share.

Sticking it to Him

noreply@blogger.com (Debbie) — Thu, 19 Jan 2006 04:26:00 +0000

It wasn’t the first time I picked Max up at school in a foul mood. (Him, not me.) But it was the first time I heard him say that he hated his teacher.

This child was screaming and thrashing around and complaining about school – all because he didn’t receive his rightfully earned reward for good behavior.

Let me explain. His teacher has a somewhat involved behavioral system in place. Each child has four popsicle sticks in pockets that hang at the teacher’s desk. When an infraction is committed, the child gets a stick pulled. If there’s more than one infraction in a day, more sticks are pulled. For each one pulled, the child needs to make up for his behavior: if one stick is pulled, he has to apologize in writing; two sticks and he misses part of recess and so on.

If a child manages to go a whole week without pulling a stick, he earns a sticker. The sticker is placed on a chart. Whoever fills the whole chart is rewarded by having lunch, together, with the teacher.

At first I thought this was a good system. But then it occurred to me it was too rigid. If a child pulls just a single stick in a week, he loses the chance to get a sticker. And if he’s missing just one sticker, he doesn’t get to have lunch with the teacher. Seems to me if a child pulls a stick on Monday, there’s little incentive to behave during the rest of the week.

That said, Max has never had a stick pulled. Despite his difficulties, he is a well-behaved child in the classroom. He has always collected his stickers and the first time around he had lunch with his teacher, Mrs. G.

Today was the second lunch with the teacher and I knew for weeks that a sticker was missing. It wasn’t that Max didn’t earn one – it’s just that one never came home. We had a snow day on a Friday some weeks ago and that’s the day she hands out the stickers. When I didn’t see one the following week, I took note of it but didn’t want to bother the teacher by asking where Max’s sticker was. I have more important issues to discuss with her and this didn’t seem like such a big deal.

Until this week, when we found Max’s chart one sticker short. I emailed his teacher explaining that we were missing a sticker and asked her to check her records just to make sure Max didn’t pull a stick. No response. So today, lunch day, I wrote up another note and stuck it to the chart Max was to bring back to school and didn’t give it much more thought. I figured it was a non-issue.

I figured wrong.

Max didn’t have lunch with Mrs. G. and that was why he was so angry and distraught when I picked him up from school. I pulled the behavior chart from his backpack to find a preprinted note attached from the teacher:

If you had outstanding behavior and have earned all of your stickers, I am sorry that you did not collect all of them in order to have lunch with me. If you were absent for some reason, your sticker was placed on your desk with your name on it. Do not wait until it’s time to turn your sticker chart in to let me know that you are missing a sticker for some reason. Please try to collect all of your stickers for your new Outstanding Behavior chart for this marking period and then I will look forward to having lunch together to celebrate your outstanding behavior choices. Sincerely, Mrs. G.

I was shocked. Max had done the hard part; he showed excellent behavior for ten straight weeks. He fought impulses and compulsions and tics. He did great work in spite of his distractibility, hyperactive mind and retrieval problems. But because he wasn’t in possession of a single sticker he wasn’t entitled to the reward?

I can appreciate that the teacher is trying to teach the kids to be responsible for their work and to be organized. That’s great. But she has to realize that these are things that do not come easily for Max. And as far as I was concerned, that had to be taken into account.

Max was truly devastated that afternoon. And I can’t say I was in much better shape myself.

Max Tries to Share, I Try to Solve

noreply@blogger.com (Debbie) — Mon, 16 Jan 2006 04:43:00 +0000

“I’ll try to listen better tomorrow and I hope I will.”
--Max, as I tucked him in at bedtime

It’s difficult to watch your child struggle with something. But “difficult” quickly graduates to “heart-breaking” once your child is aware of that struggle, too.

We vacationed at one of those indoor water parks this weekend and although we had a great time, Max had an especially hard time behaving. That wasn’t a surprise; Max consistently has a harder time focusing, transitioning and cooperating when we travel.

We suffered a weekend of name-calling, yelling and a rather surly attitude. But it was on the car trip home that we were rewarded with a valuable gift – insight.

We had stopped for gas and as I got out of the car to check something in the suitcase, Max became very agitated. He was kicking the seat in front of him and trying not to cry. I can’t recall exactly what he said but it was something along the lines of “needing to do something” and “can’t control it.” What I definitely remember was, “I can’t explain it.”

I thought he might be feeling uncomfortable because of excess energy so I asked if he wanted to get out of the car to do some jumping jacks. He said no. I figured he needed some sensory input to settle himself down and offered him a Starburst and a lollipop, both of which he refused. I suggested he take off his shoes to get more comfortable. He didn’t like any of my ideas.

It was enlightening for Max to try to express the discomfort he was feeling. But it was crushing to hear him tell us that he feels this way at school, too. When I asked what he does when this happens, he said, “nothing;” that he didn’t behave this way at school.

It saddens me to hear that Max has been struggling to keep his act together at school. He’s succeeded – we’ve never had any reports of behavioral issues – but he shouldn’t have to struggle at all.

It’s hard to know what will make him feel better since Max has no idea himself and can’t articulate exactly what he’s feeling. I don’t know if he knows the words “restless” or “fidgety” but I know that’s what he’s feeling.

If he needed it, the school would make accommodations to make him more comfortable. He could be given permission to take a walk down the hall and back. The resource room has a “chill out” corner with beanbag chairs and headphones for those kids who might need a few minutes to regroup during the day. It’s comforting, to me, that the school already has these systems in place.

The trick now is figuring out how to provide that comfort to Max.