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!

Giving Thanks to Cooper's Team

In honor of Thanksgiving, I give thanks to some incredible people who came into our lives starting when Cooper was an infant and have since become part of our extended family.

I am so, so grateful to the following individuals who are among the many who have been part of our journey with Cooper, who has been diagnosed with hypotonia (low muscle tone), global developmental delays, and autism spectrum disorder:

- My dear friend Carolyn F., who encouraged me to have Goober evaluated by the Early Intervention Program and whose son was Goober's first best friend;

- Our service coordinators during Cooper's years in EI and CPSE (Committee on Preschool Special Education), who fielded my requests for evaluations, placement, and more: Crystal from Personal-Touch, Yen-Yu and Bonnie from University Settlement, Lynnette at These Our Treasures (TOTS), and Hedi and Nancy from NYL Lifestart;

- The Early Intervention Official Designees who approved Cooper's Individualized Family Service Plans (and there were many!);

- The evaluators who assessed Cooper and recommended that he receive occupational therapy, speech therapy, physical therapy, and special instruction through EI, CPSE (when he went to preschool), and finally the Committee for Special Education (when he started kindergarten), and the administrators at CPSE and CSE who authorized the services;

- The talented staff at the Seaver Autism Center at the Mount Sinai School of Medicine in New York, whose testing and ultimate diagnosis of autism spectrum disorder enabled us to better understand Cooper;

- The teachers and staff at These Our Treasures (TOTS) and Small World North who nurtured Cooper as a toddler and preschooler, and helped him blossom into the person he is today;

- The bus drivers and matrons who brought Cooper safely to and from TOTS (when he was only 2 years old!) and later to kindergarten and first grade;

- Cooper's pediatrician, neurologist, ENT, cardiologist, and orthopaedists;

- Dorothy Siegel, for creating the ASD-Nest program in NYC, and Fred for knowing that Cooper belongs there;

- The city and state of New York, for funding the Early Intervention Program, CPSE, CSE and the ASD-Nest program;

- And last, but certainly not least, the inspiring therapists whose kindness, dedication, and TLC have made all the difference:

Occupational therapists:
Pat, Ruth, Peggy, Kristen, Rachel, Jen D. and Sam (at the fabulous Kids in Motion sensory gym in Riverdale), Jennifer (a.k.a. "Swim Jen" with Aquabilities);

Physical therapists:
Brian (you got him walking!), Diane, Dorian, Markella;

Speech-language therapists:
Ivy (you taught him sign language!), Jennifer M., Jenny, Svetlana, Joanne, Jen K., Jen L., Lori (oral-motor guru);

Special education itinerant teachers:
Jenn N. (a.k.a. "New Jenn"), Illana, Maria, Marilyn, Brian.

You're the best!!!!

An Ode to Paper

I am a paper person. Always have been, always will be.

Today I was reminded how important paper is to me. I came across a box of floppy disks -- version 2, the small ones that had a plastic case so they weren't as floppy as the original style. They were from when I used a Mac computer, probably an Apple IIe or something you could buy back in 1990.

It makes me so sad to think that I can never retrieve any of the documents on those disks -- everything from Frosh English to articles I wrote in the graduate journalism program at Medill, in Chicago -- because the format is so out-of-date that I'd have to spend a month or so hunting down a computer that could still read them (if one even exists).

Worse is that I diligently printed lists of all the files on those disks, so I know exactly what's lost.

One can only imagine the details behind a story labeled "41-year-old Scumbag," from my legal reporting class at Medill.

The disk contained other stories from that class, including:

"Burton -- Please Kill Me"
A man who was serving a life sentence in prison was begging the court to sentence him to death, while the court refused to let him fire his public defender, who wouldn't enter this request on the man's behalf.

"Ghost"
City employees were on a ghost payroll and collected a salary without having to show up for work (where can I sign up?).

"Weddings Suck"
A woman's former fiance was suing her to get the deposits back from their canceled wedding. I remember calling her to ask if she wanted to comment, and feeling horrible that she didn't know about the lawsuit until I called.

I'm sure I saved some of my articles from Medill, but now I wish I'd saved everything. How was I to know 15 years ago that the data storage system would become obsolete?

Part of why these articles mean so much to me is that they remind me of a time when I was unencumbered, easily able to be the first one into the newsroom and one of the last ones out at the end of each day.

It was such fun to be, as my teacher Jim once called me, a #$% maniac who went so far as to bring a phone to plug into a jack spotted in the courthouse press room (I only made local calls; these were the days before cell phones and smart phones and all that; besides, if anyone had asked, I would have given them $20 toward the phone bill ...).

This is why there are file cabinets in my bedroom and boxes of clips in our closet. Marc and I keep paper copies of our work so that we'll have proof of our labor, no matter what happens in the world of computers.

Time for Cake!

So, today is my first 39th birthday. Which means that seeing a book titled Fighting Fat Over Forty made me think, "Aww, #@$%! Is that what's next?"

The good news about being in the middle ages is that it's followed by the Renassaince (right?).

I'm grateful to be celebrating this day, and every other day, with my family and friends, and am especially grateful to my mom for always answering the phone when I call.

But I've noticed as I've gotten older (and have observed in others) that it's less important that there's a fuss made at one's birthday and more important that one celebrates the continuation of life by doing absolutely nothing (or as little as possible) that day.

My friend Jennifer always tried to take a personal day if her birthday fell on a weekday. Brilliant!

So here's to doing nothing, and having a glass of wine and a second piece of cake after Goober is asleep tonight.

The Kid Is Awake -- HELP!

Well, Cooper just walked into my room, zipped over to the computer, and said, "What the heck?" while staring at the screen.

I need one of those screen savers people use to hide what's on their monitor from their boss. In this case, the boss is 6 years old.

Cooper has always been fascinated by what I'm looking at online, writing or reading in an email, or doing on the computer in general.

But since he reads anything and everything, I'm not sure how to proceed with this blog. I certainly have a lot to say, but how much do I really want to share -- and subsequently discuss -- with my child?

Do I just start posting in pig Latin?

Real Latin?

That could work. I've always wanted him to learn another language (since he's already fluent in Toys I Want). Might be a pain for those of you trying to read this, though.

This'll be a good lesson for him. Mommy is doing something that is NOT ABOUT HIM. And if he thinks this is boring? Keep up the good work, Mommy!