Summer Camp Blues

Happy holidays!

For many of us, 'tis the season for putting on jackets, gloves and scarves before heading outdoors.

And yet I'm getting reminders that summer is just six months away. Yesterday I got an email from the camp that Cooper attended last year, offering a discount for early registration.

Which got me thinking: Did he have a great time there last year? I'm not so sure. He came home happy enough in the afternoons, but after the two weeks were over the real story came out. 

Staff members and campers alike were "rude," he said. He gave me examples of behavior that was, in fact, rude and not respectful (teasing, pushing, calling names, etc.). 

Moreover, it seems that some of the kids in his group were jerks, and his counselors weren't helpful in getting these kids to behave better. Is that too much to expect from a high school or college student in a leadership role?

Perhaps.

But I always felt that kindness and respect were valued at Jameson Ranch Camp, where I spent three wonderful summers growing up, so I know it's possible for a camp to have a positive, respectful environment. (There were no "exclusive relationships" allowed at this family-owned and operated camp, where everyone -- including the 6-year-olds -- had a job on the working ranch and we lived by the saying, "You get out of camp what you put into it.")

Jameson isn't a viable option for Cooper right now; it's in California and we live in New York, and it's a sleep-away camp -- which he isn't ready for yet.

But they seem to know what they're doing there in hiring staff and encouraging good behavior among campers, so I perused the camp's website and came up with some questions I'll be posing to camp directors before writing any checks:

1. What are the expectations of staff members? How are they communicated (e.g. in the job application and/or staff handbook)? 

Ideally, a counselor should be expected to be a positive role model and create a positive community. A counselor should also be expected to exhibit the following values: honesty, integrity, respect for himself or herself, and respect for others.

2. Are staff members subject to a criminal background check? A driver’s license check?

3. Are they subject to testing for drug use?

4. Are they encouraged to be cheerful and energetic with the campers?

5. Is offensive language permitted?

6. What are the expectations of the campers, and how those are communicated and supported at camp? Are they explicitly told to keep their hands to themselves, and that there's no teasing or calling anyone names?

For example, if a counselor overhears one camper insult another, would the counselor say something along the lines of, "I think that upset X's feelings. Is there something going on that's bothering you?" 

--

We're fortunate that Cooper's school excels at doing what's called Positive Behavioral Interventions and Supports (PBIS). In fact, the TA Center on Positive Behavioral Interventions and Supports (established by the Office of Special Education Programs, U.S. Department of Education) has a whole manual on preventing bullying behavior in elementary schools.

"Everyone at my school is really well-behaved," Cooper says.

Is it too much to want the same at summer camp?

Yes, I'm Paying My Kid to Eat

I use money liberally to reward and create incentives for Cooper.

(Go ahead, think what you want about my parenting skills. But please just read this first, and then sit with my child and patiently try to get him to expand his palate, night after frustrating night.)

We used to dole out toys (Thomas the Tank Engine trains and vehicles from "Cars" and "Cars 2" were frequent incentives used during the toileting process) but now that he's into LEGOs, there's only so much in the $4.99 and below price point that a company can manufacture during any given year.

So that leaves cash. Which I favor since delivery requires neither payment of sales tax nor shipping and handling charges.

Marc and I are grateful to Cooper's wonderful team at school for supporting our efforts to expand his diet beyond pizza, chicken nuggets, and Annie's Shells.

Since he responds well to incentives, somehow I managed to promise him $20 if he does good cooperating and participating when someone from his team (usually the occupational therapist) offers him a new food at school between mid-May and the end of the school year in June. This averages out to about $4 per week. I don't know if that's a fair amount. It's hard to get a sense of how much is fair when most people don't have to pay their kids to eat. 

Such is life with Mr. Happy-Go-Lucky, my favorite special needs kid.

We did a lot of this food exploration business last year in kindergarten. He'd eat a food at school (I don't know if that meant he took one bite or 25) and then refuse to eat it again at home. So we had a big gap between what he'd do in one place vs. another (the technical term is carryover, which I think is a neat word).

Or he'd eat 1-3 bites of a new food at home, profess that he liked it, and then refuse to eat it anytime it was subsequently presented to him.

This one step forward, 45 steps backward thing of his makes my life fun.

So I'm trying to encourage carryover by paying him to eat a food multiple times. For example, if he eats a portion of a new food (such as an entire piece of bread), he gets 25 cents the first four times he eats the new food.

We're on Day Three of this program, and I realize now that I forgot to credit him for the bowl of Annie's Shells that he ate tonight ("real aged cheddar" is a different flavor from his standby favorite of white cheddar, so it counts as a new food).

This is a child who will eat only ONE BRAND of ONE TYPE of strawberry yogurt. This particular brand is of course no longer sold at the convenient grocery store down the hill from us. Fortunately he has agreed to allow another brand of strawberry yogurt to cross the threshold of his mouth without protest. This brand is available at the convenient grocery store down the hill. Maybe in a year he'll agree to try regular yogurt (not the kid-branded stuff such as YoKids or Danimals Crushers). A girl can dream.

We have spent hours trying to figure out why he is such a picky eater. There's the autism, sensory issues (foods have texture, smells, temperatures, and of course, tastes), and low muscle tone problems that made it difficult for him to even use his mouth to chew and swallow.

Typically developing children usually imitate others, especially their parents, and therefore have an interest in what is on a parent's plate.

Not in this house.

Instead, we have a delightful person who appears to not want to try anything out of fear that he won't like it and there will be an unpleasant taste in his mouth afterward. At least that's what we've surmised, since he gets upset when we try to ask him about anything involving food and his preferences.

Apparently, it's not unusual for kids with ASD to refuse to try new foods, insist on eating a limited number of foods, have rules about how the food must be presented on the plate (such as not touching), be selective in what textures they'll eat, and cause disturbances during meals.

I'm guessing it's also not unusual for parents of kids with ASD who exhibit some or all of the above behaviors to want to cry in frustration. At least this one does.

The concept of a meal being a fun communal experience with one's child is shattered when said child loses interest in trying new foods at 20 months and protests by coughing, batting away the spoon or fork, or throwing the food onto the floor.

In Cooper's case, we did an oral-motor evaluation when he was 25 months old and learned that he exhibited open mouth posture with drooling and had decreased muscle tone in tongue. He was unable to swallow liquids from a cup with lip closure or do at least three suck-swallows in sequence when drinking without pausing.

He was also oral-defensive, meaning he’d scream bloody murder if you tried to touch his cheek, let alone put a toothbrush inside his mouth.

The evaluation also noted an intermittent diagonal rotary chewing pattern (whatever that is, it must be important). At the time, Cooper didn’t use his tongue to clean food from the upper or lower lip. (Um, gross, but not his fault because the weak muscles in his tongue needed to be taught how to move around his mouth and do a better job of tongueing.)

I've lost track of how much money we've spent buying food for him to try that he just rejects and we then have to throw out. I know we've spent at least $1,500 on oral-motor therapy and special products to help strengthen the muscles in his mouth, which is a lot of money but was absolutely necessary because he deserves to have a chance to have functional muscles in his mouth, even if he despises the process by which he acquires them.

It's hard to get excited about the progress, because we never know if it will continue.

That said, we had a good week: he tried a new cereal (Cascadian Farms Chocolate O's) and gobbled down an entire box of Annie's Shells & Real Aged Cheddar (good stuff, I have to say. I got the stink eye when I had a small bowl myself!).

Maybe one day my kid will eat
- a banana
- an apple
- a sandwich (even a cheese sandwich!)
- a real piece of chicken that isn't a nugget or a tender
- a carrot
- a salad (the flavors!)
- a steak
- an egg (any form, as long as it's cooked)

I'll keep you posted!

Overjoyed About Autism (Seriously!)

Today is World Autism Awareness Day, so I thought I'd share how we figured out that Cooper is on the autism spectrum. For us, it was actually wonderful news!

When Cooper was 11 months old, a pediatric neurologist diagnosed him with hypotonia (low muscle tone) and global developmental delays. We soon entered a world of specialized therapies to help him with his fine motor skills (such as holding a crayon), gross motor skills (such as walking or jumping) and his speech and language skills.

After his third birthday, he began speaking more and using increasingly longer sentences. Halfway through that year, he began attending a mainstream preschool with a special education teacher as his shadow to give him cues and foster interactions with the other kids. All of a sudden, there was a burst of speech.

At first, Marc and I were ecstatic. Cooper was finally talking! A lot! We’d waited so long for this to happen.

And then we started listening. And wondering what the heck was going on with him.

There were tantrums. Dozens a day. The only pattern was that this child was consistently furious at the world.

Something didn’t seem right to us. Weren’t kids supposed to have fewer tantrums as they got older? He was edging toward turning 4, not entering the terrible 2s.

He was increasingly rigid and oppositional about many things, particularly things that shouldn’t concern him. One day I parked the car on a different street when taking him to a physical therapy session. “You can’t park there. There is no crosswalk. That is a big problem. YOU CAN’T DO THAT!”

If we tried to walk somewhere using a different route, he’d refuse and would often buckle his legs in protest.

He was often upset when certain things weren’t “right.” For example, he’d tell us that the wall is cracked or the toy is broken and then sometimes refuse to interact with something he perceived as “damaged” (i.e. a book with a torn cover—“You can’t read that book. It’s broken. Put it down!”).

His insistence on being “right” was interfering with his social interactions. One day, he and another 3-year-old boy were playing at our house. The boy took a plastic car out of the box overflowing with various vehicles and said, “I’m getting a race car.”

Cooper replied, “That’s not a race car. It’s a race truck. It’s race truck. It’s not a race car. It’s a race truck.” The other boy just continued to play with the car and didn’t respond.

He would have a tantrum if served cereal in a bowl that wasn’t his favorite “Thomas the Tank Engine” bowl (“You used the wrong bowl! That bowl is dangerous!”) and would throw the bowl with cereal and milk onto the carpet.

He’d get upset if the “wrong” parent served him breakfast.

One day there was too much water in the bathtub. Another day there was too little water in the bathtub. Then the water in the bathtub was too warm. Or it was too cold.

Once I took the newspapers out for recycling and was reprimanded: “Daddy will be so upset! You can’t throw out Daddy’s papers! Stop that this instance!”

It was beyond maddening.

He was also inconsistent (and still is) in responding to hearing his name; at the time of his diagnosis, he wouldn’t respond in dangerous situations such as running down the sidewalk, away from me or Marc.

He would get anxious and stuck on a topic, asking the same question over and over again.

He had, and continues to have, difficulty maintaining eye contact and greeting others with “Hi” or “Good-bye” without being prompted.

He rarely imitated us and wasn’t engaging in much pretend play with his peers.

More troubling was that he was exhibiting self-stimulating behavior such as spinning in circles and grinding his teeth.

One day I sat down with the diagnostic criteria for autism spectrum disorders and realized that I could match almost all of the criteria with examples of Cooper’s behavior, based on the reports from his team of teachers and therapists.

So we took him to the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine in New York to be tested.

Although this type of testing can easily cost thousands of dollars, we were able to pay in blood. Literally. The center was doing a study on the genetics of autism, and as part of that Marc, Cooper and I allowed them to draw a blood sample for this international study.

In exchange, the doctors there did tons of testing, including an IQ test (his cognitive skillls are fine—yay! Honestly, he scored so low on a number of cognitive assessments before then, plus his speech was so delayed, that we didn’t know what was going on inside him).

They also did the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview, Revised (ADI-R). The ADOS testing sessions were videotaped and then peer-reviewed by psychologists who’d received specialized training in interpreting ADOS results.

By August, just after his fourth birthday, we had our answer. Cooper was indeed on the autism spectrum. He has some rough edges that need to be smoothed out but he is a person who really, really wants to learn and is capable of doing so.

For us, knowing he’s autistic means everything and nothing. It means everything in that we now a whole shelf of books that can give us some answers, reassurance and techniques for coping with his quirky behavior.

At the same time, it means nothing. It doesn’t change how we see him or how much we love him. He’ll always be our adorable, funny, magical child.

No Tampon Necessary

Guess what? You don't need to use tampons to get Toxic Shock Syndrome. You don't even need to have two X chromosomes.

Anyone, male or female, can get TSS. And it ain't pretty.

According to the Mayo Clinic's website, "While the syndrome can occur in menstruating women, it can also affect men, children and postmenopausal women. Risk factors for toxic shock syndrome include skin wounds and surgery."

I'm all too aware of TSS because I survived it last November.

And it moves incredibly fast.

I went to the emergency room at about 11 p.m. By about 4 p.m. the next day, I was dying.

When the surgeon and the GI specialist informed me of my worsening condition, the exchange went something like this:

Doctor: Your body is going into septic shock. 

Me (silently): Oh, $#%@. My aunt died of sepsis, so that didn't work out so well for her. Any other option here?

Doctor: Your blood pressure is dangerously low, and  it hasn't improved since this morning.

Me (silently): Yeah, I knew that when I got here. Next?

Doctor: Your heart rate is very high, heading toward taccycardia.

Me (silently): $#%@. That isn't good either.

Doctor: Your kidneys are failing.

Me (silently): Seriously? I came in here with $#%@ing stomachache and now I'll need dialysis for the rest of my life? $#%@!

Doctor: It will become harder for you to breathe as your body goes into respiratory distress.

($#%@! I tried to take a deep breath and couldn't. $#%@. $#%@. $#%@.)

My head was spinning. This all sounded great (must remain sarcastic). What were my $#%@ing options again?

Let's see. They could operate. They could slice me open and see if they could locate, isolate and remove the area affected by the Group A strep. A tall order, but a plan nonetheless.

So far so good.

The surgery might not be successful.

Um, OK. Why not? Well, they might not be able to stop the infection, so I could die on the operating table.

Oh, yipee.

If they did the surgery, I'd emerge with some collateral damage (definitely life-altering, completely managable, just not a side effect I'd ever imagined at my age).

When I heard about that, I thought, "Why the $#%@ would I want a $#%@ing XYZ?"

But wait -- there's more!

I could still die after the surgery.

OK, I see where this is going. Any other options?

Why, yes. We could do nothing.

The only drawback was the very, very, very high likelihood that my bowel would perforate.

Even though I wasn't completely sure what that meant, I knew it wasn't good. I wasn't a fan of the toilet overflowing so the thought of all that crap floating around inside my body just seemed yucky.

Plus the perforation would be in addition to the impending heart, respiratory and renal failures.

Meanwhile, I was so $#%@ing thirsty I was going out of my mind. No water, no ice chips. Just this little swabby thingie that brought like a raindrop full of fluid to my mouth was allowed.
The doctors left the room so I could mull over my choices. Ice water, please! Please, please please! Not a drop.

The surgery -- no matter how risky -- made a lot of sense to me.

It was my best chance to see Cooper again. I hadn't hugged him for three days since I didn't want him to catch what I'd thought was a stomach virus. 
 
About 20 minutes later, the doctors came back and told me a decision needed to be made NOW.

All righty. A recap of the previous conversation took place, but I was clear: Let's do this.

I turned to Marc and told him I wanted my tombstone to read, "She died craving ice water."

Then they wheeled me lickety-split into the operating room, where I insisted they let me wear my flax-seed filled eye shade. Gas mask went on, and the next thing I knew I opened my eyes and saw the hospital room.

I'd made it.

I was so, so lucky. The doctors were able to remove what they needed to during the surgery.

It was a harrowing few days afterward for my family, since it took my body a while to start functioning properly again.

Medical research has found that TSS has a mortality rate as high as 70 percent. Survivors can be faced with a slew of ongoing medical issues, particularly when kidney and liver functioning is affected. I got my party favor, as promised by the surgeon. But that was OK. I was alive.

I will be eternally grateful to Dr. Leonard Maffucci and the amazing staff at White Plains Hospital for saving my life.

Thank you, thank you, thank you!

Not Exactly the Spa

Wondering where I've been?

Well, after Thanksgiving, I came down with a stomach bug. At least that's what it looked like at first.

A few days later I was in the emergency room with excruciating pain in my stomach, watching as three nurses and five doctors gathered around me and the monitors conferring, thinking, "This isn't a teaching hospital so why are all these doctors in my room?"

Turns out I had strep in my colon, a rather unusual and unfortunate location, and my body was shutting down due to sepsis. Emergency exploratory surgery followed (as in, "We'll cut you open with a scapel, hope we find the problem, hope it's fixable and hope you make it through the procedure.") and then I was in critical condition for a few days (Marc didn't exhale until the infectious disease specialist said to him, "She's going to be fine.").

All told it was a little over two weeks in the hospital. I've been home for almost three weeks now and am just starting to get some energy flowing again. These days I fantasize about being able to hop in the car, drive the 20 minutes to Costco or Stew Leonard's or Whole Foods, be on my feet shopping, drive home, and unload my purchases. Maybe next month ...

Meanwhile, Cooper was in the hospital for three days with pneumonia -- a hospital about 40 miles from the one I was in, of course.

As a result of these adventures, I have had the pleasure of Cooper's company for the past nine days of his winter break -- thank heavens he acquired some new LEGO toys during that time to keep himself entertained.

A few perks of hospital life:

1. Lots and lots of supplies for wound care (yes, this does matter when one is at home looking at the last two pieces of the special tape used to cover the lovely incision);

2. Someone brought food upon request (albeit at odd times, such as 11:20 a.m. for lunch and 4:45 p.m. for dinner!);

3. Someone else took out the trash;

4. The reclining bed was nifty when I wanted to simultaneously rest and watch TV;

5. Enough cable channels to keep me entertained and get me hooked on HGTV's "House Hunters" and the fabulously ridiculously over-the-top FX show, "It's Always Sunny in Philadelphia." To think I'd been missing that hilarity for the past five years!