I love Nick for exactly who he is. As Shakespeare says, "Love is not love / Which alters when it alteration finds / Or bends with the remover to remove / O no! It is an ever-fixed mark." Autism does not alter my love for him, and I do not wish to remove any of who he is. I accept him for exactly who he is: a beautiful, joyful little boy who doesn't have many words to communicate with me.
My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?
What if someone hurt him?
Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.
For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.
Instead she told me that it was an adult who had done wrong.
It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.
And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.
I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.
Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.
He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.
The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.
The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?
How many traumas have been unspoken?
The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.
My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.
There's nothing worse than that.
Wednesday, November 3, 2010
Monday, November 1, 2010
Airplane Love
It's funny how the little things can change the world for a kid, especially a kid with autism.
Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.
And then, last month, something new came into his world.
It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.
It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.
All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."
The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.
But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.
This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.
Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.
It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.
Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.
The beauty of loss--there is so much to gain from it.
Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.
And then, last month, something new came into his world.
It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.
It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.
All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."
The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.
But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.
This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.
Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.
It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.
Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.
The beauty of loss--there is so much to gain from it.
Friday, October 29, 2010
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 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.
Saturday, October 23, 2010
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 ;)
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 ;)
Tuesday, October 19, 2010
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.
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.
Wednesday, August 11, 2010
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.
Monday, August 9, 2010
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.
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