Good Things Come in Small Packages

Sorting the boys' clothes to put them away is the hardest part of my laundry rountine.

The shorts are the worst to figure out. Looking at the tags doesn't help much--a 5 could belong to either Noah or Nick, depending on how tight or loose the waist is.

Noah is nine and Nick is six, but their clothes are nearly the same size.

Noah has been slowly dipping down on the growth chart over the past several years. As an infant, he was right at the 50th percentile--absolutely average--but now, at nine, he's in the 1st percentile--absolutely tiny.

The percentile isn't so important so long as it's consistent. If you start out at the 10th percentile and then stay there throughout childhood, you're good. But if your growth curve dips, that means something is wrong.

Noah's bone age scan shows that his bones have only developed to the age of a six year old. He got into an argument at school yesterday because some kid thought he was a first-grader. He's the size of a first-grader. But he's in fourth grade.

Noah's classmates are feet taller than he is, and Noah only has a couple of inches on his baby brother. That he is four years older than.

Obviously his body isn't properly producing growth hormones. So what do we do? Wait. And wait. The first appointment we could get to see a pediatric endocrinologist is the end of January. Gotta love the doctor shortage in this town.

Hopefully Nick won't surpass Noah's height in that long wait. And hopefully Noah won't beat up too many kids for thinking him a first grader.

The Girl of 1000 Husbands

My neighbor thought I was Mrs. Robinson.

I mean, there I was, taking a walk through the neighborhood with a seriously talk and dark 21-year-old and my two kids. The neighbor was, sans leash, taking his tiny little terrier (which looks like a puppy but is actually twelve) on an evening walk as he approached the four of us. Usually when we're on walks and encounter the duo, Noah and the dog spend a lot of time playing together, but this evening was different. My neighbor saw the young college junior and I speaking to each other in hushed tones and said, uncomfortably, "I'm sorry to interrupt," and scurried away.

Then there was that other time when I was at McDonalds with my kids and a different man, an older man, and a few days later a teenager who worked there said to me, "I saw you this week," with a subtle tone that she'd caught me cheating.

Ah yes, to the people who don't live in Autism Land, I'm the freaky girl who's always with a different man.

My boys have habilitation therapists who work with them on lifeskills in both the home and the community. Nicholas has 25 hours of habilitation a week, and Noah has 15. That means there are a lot of habilitators in and out of my house in a given week. And since Noah is nine years old--an age when it is totally not cool to have girls hanging around--all of his habilitators are male. The habilitator who has most of Nick's hours and has been with our family longer than anyone is also male.

Nick has goals in his program that require him to practice things like ordering at a fast food restaurant ("chicken and fries and co-o-ke," he always says). Noah's program is filled with social goals, learning how to interact and play with peers. So, of course, the habilitators and I are out in the community with the boys a lot.

On the evening my neighbor freaked about my young companion (which, eww--not only are college students gross, but as a short girl I find super tall guys even grosser), the habilitator and I had taken the boys on a walk; the walk, of course, was just a cover for working a habilitation goal because we knew the neighborhood boys would be around the corner playing. We casually walked near where the kids were playing and Noah asked, "Can I play with them?" Of course! We gave Noah his space--it's so not cool to have grown-ups hovering over play when you are nine--and kept walking along with Nick, making sure we stayed in eye-shot and ear-shot just in case we needed to intervene.

Which, unfortunately, we did. One of the older kids was being a little mean to Noah and refused to share the toy guns with him; Noah responded like a kid with autism would. It was ugly and I got tears in my eyes watching my son, who longs to play with the other kids, get his feelings hurt yet again.

But I didn't let Noah see those tears. Instead, the habilitator and I helped Noah walk through and talk through his hurt, and, while Noah was distracted with the sight of the little dog, we took a second to whisper a few things to each other about the situation out of Noah's hearing.

LOL, I guess they seemed like intimate whispers.

I enjoy the irony of it, the presumption that I am doing something dirty, when the truth is the furthest thing from that. Yes, there are men who show up at my house throughout the day, men who you might just see me with at McDonalds. But if you only stopped to eavesdrop on me and these men, you might hear us talking about . . . children's bowel movements. PECS cards. Stims. IEP goals.

And that's about as un-Mrs. Robinson as you can get ;)

This is how you know that I love you

I spent my weekend in my pajamas, curled up on my bed with the sixty papers I HAD TO grade before Monday. I graded until my eyes didn’t seem to work anymore late Sunday night, wanting to push through the last fifteen papers but not able to decode a single sentence. I was exhausted; I needed to sleep . . . but my brain was so wired from the grading marathon that sleep was hard to find.

Two hours of sleep and it was time to get Noah up for school. Breakfast ready, lunch packed, child dressed, and finally we were ready to walk out the door to the bus stop. I opened the door, and that’s when Noah said it. “My stomach sorta doesn’t feel so good.” Oh no.

I quickly jumped into triage mode—no fever, no vomit. Noah and I decided that he’ll give school a try.

We blew kisses to each other through the bus window, and then I went back into the house, so torn about how I would spend whatever little bit of time I had before Nick woke up. There are fifteen papers left to grade, and I HAD TO have them finished today. But I also had to drive to Tempe and back and didn’t want the police to find my car in a cotton field after I fell asleep behind the wheel.

I climbed into bed.

An hour later a phone call woke me up. It was Noah’s teacher. He was unusually quiet—believe me, this is notable thing—and had complained about his stomach not feeling well. “He doesn’t have a fever, though. I figured I’d keep him here as long as I could and I’ll call you if it seems he needs to go home. Are you in Phoenix today?”

I told her that I would be up there later and that today was a Dad day—I made sure she had his number in case Noah needed to come home.

Nick woke up and it was time to get medicines and breakfast in him. This is not as easy as it sounds. At some point I found five minutes to jump in and out of the shower. I got dressed, then tried to throw some clothes on moving target Nick. That’s when my cell phone rang.

“The school nurse just called me. Noah’s there and doesn’t feel well. Could you call her and see if he needs to come home? Here’s her number.”

So much for it being a Dad day.

I somehow managed to get clothes on Nick and get him into the car, but it took some creativity. His obsession of the moment is Goldfish crackers—he wanders around the house saying “Goldfeesh!” all the time—and he didn’t want to leave the house and crackers behind. Tupperware, thank you. Nick, the goldfish, and I went to the health office to retrieve Noah. Apparently, that day was the first time the nurse had bothered to read his health card because she peppered me with questions. “He has seizures? Are they grand mal? What do we need to do if he has a seizure at school?”

Back to the house and I got myself ready for school and Nick ready for kindergarten. I put Nick on his bus right as a van pulled up and it became a Dad day after all. I kissed Noah goodbye and jumped in the car for my hour and a half drive to work.

I got to ASU thirty minutes before class started. SO not enough time to finish the fifteen papers I HAD TO have finished today. But at least it’s enough time for me to read the essay I’d assigned to my students for that day.

I taught four classes back to back, stopping at the vending machine to get a bag of Cheetos for lunch at around 3:15. I ate the Cheetos as I taught my 3:30 class about the changing modes of writing in the Web 2.0 world.

7:45 came and I was done teaching. I’m supposed to stay for office hours, but I was so tired. I got some Jack in the Box and drove back to Tucson.

There’s so much to do when I get home. There are still those fifteen papers that I HAVE TO get done before Wednesday. Really. It’s been over a month. I have to finish these papers.

But instead I looked over Noah’s lab results, which had just arrived in the mail. They were awful. Awful awful. I renewed my hate of autism and plotted to figure out how the hell I could reduce the toxic levels of lead, cadmium, and arsenic in his bloodstream, how I could increase all the good minerals he was deficient in.

The papers would have to wait—I needed to sleep. I took some melatonin and thanked the universe that I was going to get some rest.

At 1:38 AM Nick came into my room, with that boundless, frenetic energy that autism brings in the middle of the night. I re-renewed my hate of autism.

A little after 6 AM I finally got Nick back to sleep. I drifted off to sleep myself just as my alarm went off—it was time to get Noah ready for school.

The rest of the week will be just as chaotic. An ISP meeting, an IEP meeting, an OT session, a follow-up appointment with Noah’s autism specialist, an MRI that Noah will need to be put under for . . . and all the post-anesthesia vomiting that I’ve learned to expect with my boys. Somewhere mixed in will be teaching and lesson planning, and maybe even perhaps grading. Maybe.

This is how you know I love you: in the midst of all of that, I made time for you. It wasn’t as much time as I wish it could be—the people I love deserve so much more—but I deliberately carved it from the chaos for you because you matter. There was that text message I sent you, the encouraging note I left on your wall, the phone call where I strained as hard as I could to hear you over the squealing children beside me, the beer we grabbed, the lunch we worked to reschedule for the fifth time because our schedules are so nutty.

All of those were deliberate choices I made because you matter so much to me—and I realized I just don’t say that enough.

Noah the Rockstar

I'm in awe of how incredibly well Noah has been handling all of this new seizure stuff that's been thrown in his lap. That kid is a rockstar.

He wasn't thrilled about adding yet another medical professional onto his already-full dance card of doctors to visit. For days before the first appointment with the neurologist, he kept telling me, "But I don't need a neur . . . what? A neurologist. I don't need a neurologist." As we sat in the waiting room, that refrain returned. You know, if I was a nine-year-old kid, I wouldn't want a neurologist, either.

But then he got into the exam room, and I was in awe. I just sat back quietly and watched during the first half of the appointment as Noah, in such a mature way, answered the doctor's questions about his health and sleep patterns. It was only when she got to tough questions about his birth complications and autism that the doctor had to turn to me for answers. I was so proud of my boy for taking ownership of his own healthcare, being his own advocate.

The most amazing part was when she examined Noah. He HATES having doctors examine him. I mean, he's got all these sensory issues and doctors come along and touch his body and shine lights in his eyes and jam sticks in his mouth. But Noah was incredible. He sat, he listened . . . and the only time he had any issues was when the doctor had to shine a light in his eyes. I was so proud.

Of course, it was the same thing that I heard with Nick--the doctor thought Noah was probably fine, but we'd do an EEG just to make sure.

Noah was a rockstar with the EEG. He had so much fun staying up late, and he was nothing short of incredible during the procedure, letting the tech place all of those electrodes all over his head even though he hates people touching his head. Simply amazing.

And then, of course, I got the same call that I'd gotten with Nick--the "wow, mom, you were right about the seizures!" call.

I sat down with Noah on his bedroom floor and explained to him about the excess electrical activity in his brain and the effect it has on him. I described the precautions we'd have to take now, explained he'd have to take medicine now, talked about the benefits that the medicine will have.

I expected him to get frustrated or upset--he hates taking medicine--but he didn't. He just calmly accepted it all with maturity and grace.

Noah has had to carry so much more than most kids would ever have to. Not only does he have his own medical issues to contend with, but he also has a severely autistic brother that often challenges his patience and understanding. He has his moments when it's all a little too much for him, but I'm surprised at how rare those moments are. He carries more weight that most adults do, and carries it better than most adults would.

That's what makes him a rockstar.

The Parent Volunteer

"No parent has ever offered to do that before," Beh's shocked yet excited teacher said.

His new teacher had called last week, just one of the things that shows how wonderful she is--she took the time to call in advance of school starting to touch base with her students' parents.

We had a really wonderful conversation, one that lasted about twenty minutes, and toward the end I offered to volunteer in the class on Tuesdays and Thursdays.

She was ecstatic and welcomed having a parent in the room . . . but was shocked because no parent had ever offered to volunteer in her class before.

She teaches at the school that, while it is the smallest in the district, also happens to have the highest number of parent volunteer hours in the district. The parents at the school are active and every time I've been there to volunteer for something in my older son's class, I've had to wait in line to sign in because there were a lot of other parent volunteers signing in ahead of me.

What makes Beh's energetic, student-centered, call-parents-just-to-touch-base teacher's class different then? Why at a school that thrives on parent volunteers are there no parents volunteering to come in to help run centers or read stories or make photocopies?

The only difference is that she teaches the cross-categorical class for students with special needs.

I've been thinking about that phone call all weekend, and the more I do, the more bothered I am.

For far too long in our country, we've Othered children with special needs, sending them off to the classroom at the end of the hallway and forgetting that they were there. I look back on my own educational experiences, and the only time I was even conscious of a "special ed" room existing was when I was in high school and my Halloween costume was voted the best in my first hour class; I, along with the winners from the other first hour classes, went to the special ed room, which was empty of students during first hour, for the final round of the costume contest (and lost). The room was right next to the bathroom at the end of the English hall, and I'd used that bathroom a hundred times during my years at the school but never once thought anything about who was in that room.

I look back now as a mother and I want to cry, thinking about the sons and daughters who lived a life of isolation in that room, so isolated that no one even knew they were there.

I guess that maternal response is what makes me so troubled by the fact that in Beh's teacher's long career, not a single parent would volunteer to help in her class. Why wouldn't they? They'd volunteer to help in their typical children's kindergarten classes, wouldn't they? Why would a parent of a child with special needs treat that child's education any differently?

We've heard it and lived it so many times--you are your child's best advocate. As parents of children with special needs we become medical experts and legal experts. We advocate fiercely for our children in IEP meetings to demand that the school do all it should for our children. But why on earth would the school take our children's education seriously if we ourselves don't? What's to stop them from marginalizing our kids if we ourselves treat them as unworthy of our time?

I will be there this year. I will run errands to the office and clean whiteboards and grade papers and sing songs and read stories. I will be there. And I hope to God that other parents join me.

A big brother's love

Nick got home from OT and was miserable. He'd cry and scream off and on. He was miserable for some reason he couldn't communicate (it was so reminiscent of some of our earlier days with autism). Noah, however, didn't have much compassion and would yell "Don't scream!!!" every time Nick screamed. And so I yelled at Noah not to scream at his brother. A lovely cycle of yelling ;)

Nick laid down on his back on the living room floor and his face was red with misery. "Let's go night night sleeps" I told him, thinking that some rest would make him feel better. He gave me a look that said, "Heck no! The sun hasn't even set yet!"

"You can choose anywhere you want to lay down," I told him. And he went right over to the couch and laid down. (I love that my child can now actually understand and respond to things I say!)

I got his blanket for him and after a few minutes I looked over to find him fast asleep. "Look," I whispered to Noah, " Nick's asleep."

Noah turned to look at Nick, then got up from his chair to gently pet his brother's hair.

Noah has been watching Cartoon Network for the past hour, and even though he's very engaged in his shows, he keeps stopping every now and then to check on his brother and pet his hair.

Brothers may make each other yell, but there sure is a beautiful love there.

This is what it's like to be loved

I came in to find Noah had settled himself into my room, a little bed of blankets spread out on the floor.

"Mommy!!" he said as he ran to hug me. It's his typical greeting for me . . . I can go outside for 45 seconds to put the trash in the dumpster and he'll greet me with the same excited "Mommy!!" that I'd hear if I'd been gone for five days.

"Are you sleeping in here?" I asked.

In the sweetest, most sheepish voice he replied, "I want to be close to you."

Who am I to argue with that?

He set about arranging the room for sleeping. He got his Lightning McQueen nightlight and plugged it into the wall. Then he tucked me in, making sure I had all my pillows and blankets. "Here's a nice spot for your cell phone," he said, taking it from it's typical home under my pillow and setting it on a shelf right next to my bed. "Oh! And don't forget your night guard!" he exclaimed like a good parent as he brought me the case from my dentist's office. It's supposed to stop me from grinding my teeth at night . . . "supposed to" but I didn't know for sure because I'd never made it a full night with it in. I put the night guard in place and Noah shut off the light.

Even with a visit from an incredibly powerful thunderstorm, I had a soothing night's sleep with my son sleeping on the floor next to my bed, and I didn't even grind my teeth once.