I am not Adam Lanza's mother.
Over a year ago, something really terrible happened in Newtown. It launched our nation into an often vitriolic conversation about mental health, autism, and violence. The media tended to focus on the wrong things, like the fact the shooter may or may not have been diagnosed with an autism spectrum disorder. When, you know, autism does NOT cause violence; it does not lead to mass murder. Ugh, I'm still angry as I think back to some of the uninformed things I read in the news last year.
In the midst of all of this, a mother opined her $.02 on her blog. You know the one, you all read it--the "I am Adam Lanza's mother" manifesto by The Anarchist Soccer Mom.
Did she raise some important points about the broken mental healthcare system in the United States? YES. We need more people to call the system out so that we can begin to change the system and change lives.
But here's my issue, the issue that eventually led me to stop blogging--The Anarchist Soccer Mom didn't use a just pseudonym to identify herself. Right there on her own blog, next to a picture of her, is her full name, Liza Long. And she didn't out herself, and by extension, her son, on just her blog. She published the post under her own name on The Blue Review. And then, as her post gained viral traction, she went on the morning talk show circuit. I got to see into her life, in depth, on PBS--I saw her, the inside of her home, her neighborhood, her all.
Long made no attempt to keep herself anonymous, which means her son was never allowed to keep himself anonymous. Sure, she didn't use his name. But when a mother has her face a personal details all over the TV and the Internet, it's pretty easy to figure out who her son is, who the "monster" is that she has to hide the knives from (yep, she proudly showed off the container she hides the knives in on PBS).
Forget HIPAA; this child now has no chance of having his healthcare information kept private. Everyone in his community now knows of his mental health diagnoses. How many whispers and stares did he get because of his mother's actions? How many people turned their grocery carts the other way and went down a different aisle to avoid him in the local Safeway? How severely has this scarred an already fragile child?
People began forwarding Long's piece to me as it went viral, at least one person commenting that it reminded them of my experience with Beh.
Um, what?
I was stopped in my tracks. How on earth could someone see a parallel between my son, who doesn't have language to express his fears and sorrows so he at times turns to screaming and pinching to communicate them, and a child who deliberately threatens and attempts to murder people? Are you kidding me?
I know my friends are well-intentioned and shared the article in love. But I couldn't get passed the fact that this was how the world saw my son. Even worse, that I had a role in that perception. How often had I violated my child's privacy with my words?
So I stopped writing, completely.
In the time that has passed since that sad December, I've had a lot of time to think about all these things. The truth is, we need to be having conversations about autism, healthcare, mental health, and (dis)ability, and those conversations need to happen in the public sphere. There are so many ignorant misconceptions about neurodifferences, so many backwards medical and governmental policies, that we have to talk about these issues loudly enough for others to hear if we hope to make a change.
But we also need to protect our kids.
I hope to do both. I'm reminded of bell hooks and her discussion of the challenges of being publicly private, bringing the personal into the public sphere. In the end, she decides the challenges are worth it.
So I write. Carefully, cautiously. You never saw my full name on this blog, and you won't now. There will be no identifying pictures. You will not see my sons' names. They will just be N, Beh (the pseudonym his brother gave him nine years ago still fits), and L (yes, there is a third now--it's been awhile since I've blogged!).
And if I'm ever foolhardy enough to attempt to appropriate somebody else's experiences as my own--whether it is pretending I know the experiences of the now voiceless mother of Adam Lanza or my own children--I hope you'll call me on it.
Here's to continuing the conversation.
Thursday, May 15, 2014
Friday, August 17, 2012
Day 60: Pearls before Swine
Nick injured the tendon in my right wrist with his bite. Three days later it still hurts when I touch it.
I had taken Nick to get measured for an orthotic. It’s common for children with autism to have physical difficulties to go along with the socio-psychological challenges they face. Nick is one of the 30% of people on the spectrum who have moderate to severe loss of muscle tone. For Nick, this is most evident in his trunk strength. His abdominal muscles are rather weak, which makes it hard for him to sit up for long periods. To compensate, he uses his posture to hold himself up. Instead of sitting on his bottom, Nick sits on his feet. He has hypermobility in his ankles, which means he can perform the super-human feat of having his feet flat on the floor with the rest of his body weight squatted above them. This way he can lean his torso on his knees rather than hold himself up, giving his tired core muscles a break.
This posture can cause a lot of problems. First, the weight of his body on his ankles has caused his heels to shift outward. If you look at your own feet and ankles, you’ll see your heel lines up directly with your ankle. Nick’s heels, however, are about an inch to the outside of his foot. Second, the posture has caused his shins to bow outward, making the bone more crescent-shaped than straight. Third, it has caused a curvature in his lower spine. He looks a bit like a stegosaurus with the knobby hump curving outward from his back.
The physical therapist wants Nick to get orthotics to straighten out his feet before he starts regular PT sessions. So off to the orthotic specialist we went.
Nick did so much better than he would have pre-risperidone. He flipped the light switches in the waiting room, but he was easily redirected. When we went into the exam room, he hid under the table, but he didn’t melt down. Progress.
Through coaxing and diversion I was able to get Nick through the physical exam. We even made it through the fitting. Almost.
The mold of Nick’s left foot was perfect, but the mold of his right, not so much. She had to redo it.
I had taken Nick to get measured for an orthotic. It’s common for children with autism to have physical difficulties to go along with the socio-psychological challenges they face. Nick is one of the 30% of people on the spectrum who have moderate to severe loss of muscle tone. For Nick, this is most evident in his trunk strength. His abdominal muscles are rather weak, which makes it hard for him to sit up for long periods. To compensate, he uses his posture to hold himself up. Instead of sitting on his bottom, Nick sits on his feet. He has hypermobility in his ankles, which means he can perform the super-human feat of having his feet flat on the floor with the rest of his body weight squatted above them. This way he can lean his torso on his knees rather than hold himself up, giving his tired core muscles a break.
This posture can cause a lot of problems. First, the weight of his body on his ankles has caused his heels to shift outward. If you look at your own feet and ankles, you’ll see your heel lines up directly with your ankle. Nick’s heels, however, are about an inch to the outside of his foot. Second, the posture has caused his shins to bow outward, making the bone more crescent-shaped than straight. Third, it has caused a curvature in his lower spine. He looks a bit like a stegosaurus with the knobby hump curving outward from his back.
The physical therapist wants Nick to get orthotics to straighten out his feet before he starts regular PT sessions. So off to the orthotic specialist we went.
Nick did so much better than he would have pre-risperidone. He flipped the light switches in the waiting room, but he was easily redirected. When we went into the exam room, he hid under the table, but he didn’t melt down. Progress.
Through coaxing and diversion I was able to get Nick through the physical exam. We even made it through the fitting. Almost.
The mold of Nick’s left foot was perfect, but the mold of his right, not so much. She had to redo it.
Scream, kick, bite, pinch, etc., etc., etc. I thought about posting pictures of the bruises I left the appointment with, but I'm tired of detailing my wounds. Let's just say there's a large patch of purple five-inches long and three inches wide on each arm. The cool part is that most of the damage is on the back side of my arms, so if I don't lift my arms up, you miss most of the freak show.
That was enough to get me to finally do what I've been hesitant to do for the past couple of weeks--call Nick's doctor. She increased his dose of risperidone a tiny bit; we'll see if it helps.
But here's what I couldn't stop thinking about during the trip to the orthotic specialist, and I'm not sure if I should say it or how I should say it. It's just that there were all these pictures of products, from helmets to reshape infants' mal-developed skulls to titanium legs for children who had lost their own. There was my fearful autistic son, fighting in fear. There were then the thoughts of mothers I know, mothers whose children are on feeding tubes or have had open-heart surgery or have life-threatening asthma or are battling cancer or have lost the fight with an illness and are mourned.
So many children, so many mothers face horrific, overwhelming, nearly insurmountable struggles. And it makes me angry when I hear mothers who have (thankfully) never had to endure such dark moments complain and feel overwhelmed by the healthy children they have been given. Getting my child to soccer practice is so difficult! My child has the stomach flu! My baby is teething! Back to school shopping is so hard! I have to sit in the pick-up line at the elementary school every day for an entire half hour! Oh my God! It's the most terrible thing I've ever encountered!
I struggle, really struggle, to bite my tongue when I hear mothers say such things. I want to grab them by the shoulders and shake them--HARD. I want to tell them that all they "endure" is really a delightful blessing of mundanity. I want to tell them they have a life full of blessedly pedestrian moments to be thankful for. I want to tell them that they are casting pearls before swine. How DARE they cast those pearls aside. I want to keep shaking them until they gather up every single pearl, clean them lovingly, and store them in the treasure box of their heart.
Just, be thankful. Every time you are not sitting in an endocrinologist's/psychologist's/oncologist's/ nephrologist's/pulonologist's/any-other-ologist's office with your child, be thankful. Every time you are looking at your child smiling instead of suffering, be thankful. Every time the biggest argument in your house is about how much time your son gets to spend playing Nintendo, be thankful. Smile, even. Hell, throw a party--your child's fight is for video game time instead of for his life. Be. Thankful.
Because there are millions of mothers who would give all they have to live just one day with your "curses."
Monday, August 6, 2012
Day 49: Back to School
6:05 AM: Wake up from crab-fishing dream. I was throwing the hook and doing really well on the Cornelia Marie. Side-effect of watching Deadliest Catch episodes on Netflix before bed.
6:06 AM: Put some clothes on. Renew my yearly resolution not to be that mom who puts her kids on the bus in her flannel monkey pajama pants. Resolution should be broken by October.
6:07 AM: Wash face, look at my Zyrtec and Symbicort on the counter, decide to take them after I get the kids on the bus.
6:10 AM: Go out to kitchen to find Noah has all his medicine ready (I didn't know he even knew how to measure the doses!) and is getting his breakfast ready. He reports he's been up since four.
6:14 AM: Prepare breakfast for Nick only, since Noah is some fancy grown-up junior high kid now and doesn't need mom to make his.
6:20 AM: Go in to wake up Nick. He's wet his bed. Clean child. Strip bed.
6:26 AM: Very tired Nick tries to go back to bed. Not happy that his bedding is gone. Lays down on towel.
6:29 AM: Try to dress limp noodle child.
6:35 AM: Finish dressing limp noodle child, except for shoes.
6:38 AM: Bring Nick his Risperidone. He takes it on the first try. Phew.
6:40 AM: Offer Nick his favorite breakfast. He screams.
6:45 AM: Nick gets angry and tries to pinch me. And pinches me more. He's starting to build up a tolerance to Risperidone. Boo.
6:50-7:05 AM: Try to get shoes on Nick. It doesn't go so well. Noah gets so fed up with Nick's screaming that he starts screaming. Send Noah to his room.
7:08 AM: Send Nick to his room because he's gotten too violent about the whole shoe thing.
7:11 AM: Go outside to meet Nick's bus. It's disgustingly Florida humid out there. Tell driver Nick's too upset to get on bus this morning.
7:20 AM: Retrieve Noah from his room. Try to comb out his cowlick.
7:29 AM: Try to comb out cowlick again. Give up and decide he can impersonate rooster at school.
7:32 AM: Noah and I go outside to wait for his bus. They tell you it's a 10-minute window on either side of the official time so we should be out there 10 minutes early, but I want to avoid the disgustingly Florida humidity and wait until five minutes before.
7:37 AM: Official pick-up time. No bus.
7:37-7:47 AM: Anxiously wait for the far-too-wide 10-minute window to close so that I can call and ask where the eff the bus is. Mosquitoes nibble at my feet an ankles, a side-effect to the disgustingly Florida humidity.
7:48-7:51 AM: Call transportation. Dispatcher dispatches wrong driver, the one who goes to the wrong junior high. Dispatcher then dispatches correct driver. Mosquito bastards bite more, prompting runny nose and watery eyes.
7:52 AM: Go back into house to find happy Nick jumping on his bed. Phew. Throw Nick's school stuff into my car.
7:54 AM: Throw children into car, too. Air conditioning sooo much better than disgustingly Florida humidity. Wait for Noah's bus.
8:07 AM: Noah's bus arrives 30 minutes late. Drive Nick to school.
8:10 AM: Asthma attack from stupid evil mosquito-bite allergy begins in car. Denise had decided to take her Zyrtec and Symbicort after getting the boys off to school. Oops.
8:23 AM: Pull into Nick's school. Before getting Nick out of car, watch Noah get off his bus up the hill at the junior high. Aide meets him and he bounces into the school to start new life as fancy grown-up junior high kid.
8:24 AM: Put shoes on Nick. Unbuckle his car seat.
8:24 AM: Nick takes off his shoes.
8:25 AM: Decide shoes aren't important. I mean, really, aren't they just part of a heteronormative patriarchal ideology of conformity anyway? Decide Nick should challenge hegemonic forces and stage a shoeless rebellion against the man.
8:30 AM: Deliver Nick and his footless shoes to his teacher.
8:45 AM: Return home to my beloved Symbicort and Zytec. Rejoice that school days are so much calmer than the chaos of summer.
6:06 AM: Put some clothes on. Renew my yearly resolution not to be that mom who puts her kids on the bus in her flannel monkey pajama pants. Resolution should be broken by October.
6:07 AM: Wash face, look at my Zyrtec and Symbicort on the counter, decide to take them after I get the kids on the bus.
6:10 AM: Go out to kitchen to find Noah has all his medicine ready (I didn't know he even knew how to measure the doses!) and is getting his breakfast ready. He reports he's been up since four.
6:14 AM: Prepare breakfast for Nick only, since Noah is some fancy grown-up junior high kid now and doesn't need mom to make his.
6:20 AM: Go in to wake up Nick. He's wet his bed. Clean child. Strip bed.
6:26 AM: Very tired Nick tries to go back to bed. Not happy that his bedding is gone. Lays down on towel.
6:29 AM: Try to dress limp noodle child.
6:35 AM: Finish dressing limp noodle child, except for shoes.
6:38 AM: Bring Nick his Risperidone. He takes it on the first try. Phew.
6:40 AM: Offer Nick his favorite breakfast. He screams.
6:45 AM: Nick gets angry and tries to pinch me. And pinches me more. He's starting to build up a tolerance to Risperidone. Boo.
6:50-7:05 AM: Try to get shoes on Nick. It doesn't go so well. Noah gets so fed up with Nick's screaming that he starts screaming. Send Noah to his room.
7:08 AM: Send Nick to his room because he's gotten too violent about the whole shoe thing.
7:11 AM: Go outside to meet Nick's bus. It's disgustingly Florida humid out there. Tell driver Nick's too upset to get on bus this morning.
7:20 AM: Retrieve Noah from his room. Try to comb out his cowlick.
7:29 AM: Try to comb out cowlick again. Give up and decide he can impersonate rooster at school.
7:32 AM: Noah and I go outside to wait for his bus. They tell you it's a 10-minute window on either side of the official time so we should be out there 10 minutes early, but I want to avoid the disgustingly Florida humidity and wait until five minutes before.
7:37 AM: Official pick-up time. No bus.
7:37-7:47 AM: Anxiously wait for the far-too-wide 10-minute window to close so that I can call and ask where the eff the bus is. Mosquitoes nibble at my feet an ankles, a side-effect to the disgustingly Florida humidity.
7:48-7:51 AM: Call transportation. Dispatcher dispatches wrong driver, the one who goes to the wrong junior high. Dispatcher then dispatches correct driver. Mosquito bastards bite more, prompting runny nose and watery eyes.
7:52 AM: Go back into house to find happy Nick jumping on his bed. Phew. Throw Nick's school stuff into my car.
7:54 AM: Throw children into car, too. Air conditioning sooo much better than disgustingly Florida humidity. Wait for Noah's bus.
8:07 AM: Noah's bus arrives 30 minutes late. Drive Nick to school.
8:10 AM: Asthma attack from stupid evil mosquito-bite allergy begins in car. Denise had decided to take her Zyrtec and Symbicort after getting the boys off to school. Oops.
8:23 AM: Pull into Nick's school. Before getting Nick out of car, watch Noah get off his bus up the hill at the junior high. Aide meets him and he bounces into the school to start new life as fancy grown-up junior high kid.
8:24 AM: Put shoes on Nick. Unbuckle his car seat.
8:24 AM: Nick takes off his shoes.
8:25 AM: Decide shoes aren't important. I mean, really, aren't they just part of a heteronormative patriarchal ideology of conformity anyway? Decide Nick should challenge hegemonic forces and stage a shoeless rebellion against the man.
8:30 AM: Deliver Nick and his footless shoes to his teacher.
8:45 AM: Return home to my beloved Symbicort and Zytec. Rejoice that school days are so much calmer than the chaos of summer.
Monday, July 23, 2012
The 50%
I took Nick for his follow-up at Melmed today. Last time our doctor kept interjecting at random times during the appointment, "He did all that? All those bruises are from him? I've never seen a mother that bruised." She was just so shocked by the bruises that she couldn't keep herself from returning to them.
Today it was the same thing. She was so shocked that she kept interjecting, "Look at him; he's so calm. He's not hand stimming. He's not humming. He's so calm!"
I loved that she could see it so clearly.
Nick was awesome at the appointment. He got out of the car with ease and he handled the chaos of a very busy waiting room well. He took off his shoes as soon as we got in the door, but that was a behavior I could definitely manage ;) When it was time for the doctor to weigh him, he went right over to the scale and stood still; when it was time to measure his height, he went right over to the ruler on the wall and stood tall. He smiled when he doctor listened to his heartbeat.
We're going to keep him on the Risperidone, since it is working so well, and in a few months we'll look at adding an additional medication for ADHD.
Best of all? Nick is now 48 pounds. Which moves him from the bottom of the scale to the 50th percentile! For the first time in his life, his weight is blissfully, wonderfully average. 'Average' is a word I never hear when it comes to my children; it's got a beautiful ring to it.
Today it was the same thing. She was so shocked that she kept interjecting, "Look at him; he's so calm. He's not hand stimming. He's not humming. He's so calm!"
I loved that she could see it so clearly.
Nick was awesome at the appointment. He got out of the car with ease and he handled the chaos of a very busy waiting room well. He took off his shoes as soon as we got in the door, but that was a behavior I could definitely manage ;) When it was time for the doctor to weigh him, he went right over to the scale and stood still; when it was time to measure his height, he went right over to the ruler on the wall and stood tall. He smiled when he doctor listened to his heartbeat.
We're going to keep him on the Risperidone, since it is working so well, and in a few months we'll look at adding an additional medication for ADHD.
Best of all? Nick is now 48 pounds. Which moves him from the bottom of the scale to the 50th percentile! For the first time in his life, his weight is blissfully, wonderfully average. 'Average' is a word I never hear when it comes to my children; it's got a beautiful ring to it.
Monday, July 16, 2012
Boobies! (Or, Day 28)
Risperidone can affect hormone production, specifically prolactin.
This evening Nick had his shirt off and Joe and I were marveling. "Look at his belly!" "I know! It's awesome!"
Nick has always had a rather concave stomach. And protruding ribs. And bony legs. At his last well-child visit, he was below the third percentile for weight. He was severely underweight.
Luckily for us, one of the major side effects of Risperidone is increased appetite. Nick started to eat, ravenously. He gained several pounds. His belly actually bows out a little bit now instead of caving in.
All this time trying to increase his weight, and a drug comes in to work wonders in just four weeks. Yes, we marvel at the belly.
"Look at his belly! And he's got little boobies!" I exclaimed, noticing the tiniest bit of fat there for the first time.
"I know, that's what I said!" I remembered then that Joe had said something about a bit of weight in Nick's chest a few days ago.
I was tickled by it. He was gaining so much weight that he was even getting a tiny bit plump in the chest. Yes!
A couple of minutes later, though, I remembered back to the conversation I had with Nick's developmental specialists. She outlined the risks and side effects of risperidone. She had said something about it affecting his hormones. That was why she was going to test his blood every couple of months, to make sure his hormone levels were okay.
Prolactin, that's what she was looking for. I knew all about prolactin from being a mom--it's the hormone that spurs milk production.
No, no, no. There can't be a hormonal issue--he can't go off this drug.
I touched his chest. Behind his right nipple, I felt a lump. It was very familiar feeling, so much like what I felt in my breasts when I was lactating.
No, no, no. He can't go off this drug.
I did what it is that I do--I scoured medical journals for answers. I found a study conducted by University Hospitals of Cleveland about prolactin levels in children taking risperidone. It found that prolactin levels increased in both females and males, peaking at about three times normal levels at 4 to 7 weeks of treatment. Crap. Nick's hitting that zone now, he's getting to the highest prolactin levels.
But then I read more. After 4 to 7 weeks, the levels go down. By weeks 8 to 12, the levels drop to almost normal in males. Phew.
I have an appointment with his specialist on Monday and we'll get it all checked out, of course. But for now, until the levels go back down, I've got a little boy with some tiny, tiny little boobies.
This evening Nick had his shirt off and Joe and I were marveling. "Look at his belly!" "I know! It's awesome!"
Nick has always had a rather concave stomach. And protruding ribs. And bony legs. At his last well-child visit, he was below the third percentile for weight. He was severely underweight.
Luckily for us, one of the major side effects of Risperidone is increased appetite. Nick started to eat, ravenously. He gained several pounds. His belly actually bows out a little bit now instead of caving in.
All this time trying to increase his weight, and a drug comes in to work wonders in just four weeks. Yes, we marvel at the belly.
"Look at his belly! And he's got little boobies!" I exclaimed, noticing the tiniest bit of fat there for the first time.
"I know, that's what I said!" I remembered then that Joe had said something about a bit of weight in Nick's chest a few days ago.
I was tickled by it. He was gaining so much weight that he was even getting a tiny bit plump in the chest. Yes!
A couple of minutes later, though, I remembered back to the conversation I had with Nick's developmental specialists. She outlined the risks and side effects of risperidone. She had said something about it affecting his hormones. That was why she was going to test his blood every couple of months, to make sure his hormone levels were okay.
Prolactin, that's what she was looking for. I knew all about prolactin from being a mom--it's the hormone that spurs milk production.
No, no, no. There can't be a hormonal issue--he can't go off this drug.
I touched his chest. Behind his right nipple, I felt a lump. It was very familiar feeling, so much like what I felt in my breasts when I was lactating.
No, no, no. He can't go off this drug.
I did what it is that I do--I scoured medical journals for answers. I found a study conducted by University Hospitals of Cleveland about prolactin levels in children taking risperidone. It found that prolactin levels increased in both females and males, peaking at about three times normal levels at 4 to 7 weeks of treatment. Crap. Nick's hitting that zone now, he's getting to the highest prolactin levels.
But then I read more. After 4 to 7 weeks, the levels go down. By weeks 8 to 12, the levels drop to almost normal in males. Phew.
I have an appointment with his specialist on Monday and we'll get it all checked out, of course. But for now, until the levels go back down, I've got a little boy with some tiny, tiny little boobies.
Sunday, July 15, 2012
Day 27
Risperidone is no cure. (Not that I thought it was, but now I have seen it, for sure).
We took the gamble of taking Nick to Reno. We knew it was a lot to ask of him, but we wanted to give it a try.
We left at about 2 AM, hoping the boys would sleep through the first part of the drive. Noah did. Nick didn't. He sat quietly in the dark of night, sitting up tall so that he could see headlights pass by. He was silent for hours until, out of nowhere, he loudly proclaimed, "Joe tickle Nicowis!!" We could hardly stop laughing.
We drove. And drove. Past the ghosts of mining towns, past the never-ending fields of sagebrush, past the run down purple double-wides that housed brothels. Just seeing those makes you want so scrub your skin off with Purell.
Nick. Was. Incredible. Joe and I were in a perpetual state of awe. He was in heaven with the motion of the car and the sights moving past the window. So awesome!
We got to my mom's house and he did well. When he's in a new environment and feels stressed and out of control, he finds the light switches and flips them on and off. I think it is soothing for him because it is one thing he can control in a vast sea of uncertainty. He did that. A lot. For several days.
The dog added to his stress. Instead of tantruming, though, he ran into either my parents' or my nephew's bedroom, closed the door, and hid under the blankets. I didn't like him experiencing that stress, but he did a great job of finding a positive coping strategy to get through it. Yay Nick!
By the third day, though, he was reaching his limit.
We took a trip to Tahoe. On a Friday. On a holiday weekend.
Horrible plan.
It was stop and go traffic around the lake. Mile after mile, we crept two feet and stopped, crept two feet and stopped. It wasn't just Nick--all four of us were beyond frustrated with the traffic. Eventually we turned around and headed back . . . with one pit stop.
Oh Chocolate Nugget, I love you. Your peanut butter fudge is the bomb. I cannot resist you!
Nick didn't share my love. It all started with a half-open door to a room that said "employees only" on the door. Nick wanted to go in to flip the light switches. I didn't let him. He wanted to close the door because half-open doors really bother him. I wouldn't let him. I steered him toward another part of the store and he kept trying to pull away to go back to the door. I wouldn't let him.
Just when I thought I'd succeeded in distracting him from the door, he started to scream, to pinch, to drop to the floor as dead weight.
It was the first tantrum I'd seen since he'd started the medicine.
Joe took him outside. They walked over to see the giant prospector on the hill--I think he must be a brother of the lumberjack on Stone in Tucson. Nick calmed.
That night we went to my brother's house for dinner. Another dog, another new environment. Nick was a champ again, using coping strategies to avoid the chaos. For about an hour he hung out alone in his cousin's room playing with a Lego City set, and after that he alternated between burying himself in the blankets on my brother's bed and flipping the light switches in the master bath.
The next morning, Nick decided he was done.
He put on his shoes and said to me, "Let's go bye-bye house."
Sure! You used language! I'll do whatever you want!
My dad needed some post-surgery supplies, so I could get Nick out of the house with a Target run.
As we pulled into the Target parking lot, Nick started to scream. When I tried to get him out of the car, he kicked. He hates big box stores, but it was more than that--when he asked to go bye-bye, he was asking to go home, and I took him to the wrong place.
Joe got Nick some Doritos--his current favorite thing in the universe--and drove Nick around while Noah and I quickly shopped. Then it was time to brainstorm what to do to keep Nick happy.
We decided to go to a park. On the way, we stopped at a 7-11 to get some drinks.
Another meltdown. 7-11 is not where Nick wanted to go. Not at all. I drove him around while the guys got the drinks.
The park would make it all better, I was sure. We pulled into the playground at Rancho San Rafael.
Nick played on the equipment for a few minutes, but he just couldn't calm himself. He ran frenetically. He tried to get into the stuff other parents had brought to the park. He tried to run away.
I took him over to a sandy horseshoe pit, thinking the sand would calm him. I was wrong. I took him on a walk around the pond, thinking that would calm him. I was wrong. He kept trying to run into the private party on the pagoda, kept freaking out about the broken drinking fountain, kept trying to get under the ropes blocking off access to the pond.
I steered him back toward the parking lot--it was time to go. We didn't get back in time, though. The tantrum started.
He screamed. He pinched. He fought for dear life. I threw him over one shoulder, wondering if the families at the park would wonder if I was kidnapping him with the way he was fighting against me. Joe had heard the screams long before I made it back to him, so he and Noah were ready to go when Nick and I made it to the parking lot.
Phew.
We left town that night.
It took a couple of days for Nick to recover. He was on edge even though we were home.
My arms are still recovering. I wrenched my neck by sleeping in the car and I was going to get a massage this weekend to loosen it up. But when I took a look at my arms Saturday morning, I was too embarrassed to go let some stranger see my bruises. I looked like a domestic violence victim. I know that I shouldn't care what others think, but the thought of someone I don't know seeing that was too much.
Baby steps. It's about baby steps. Nick is making progress, in his time. His language is coming back. This week he's up to 86 words and 63 requests. He's using sentences like "I want Dorito, please." He's making such great strides.
Maybe, someday, he'll even be ready for a five-day road trip.
We took the gamble of taking Nick to Reno. We knew it was a lot to ask of him, but we wanted to give it a try.
We left at about 2 AM, hoping the boys would sleep through the first part of the drive. Noah did. Nick didn't. He sat quietly in the dark of night, sitting up tall so that he could see headlights pass by. He was silent for hours until, out of nowhere, he loudly proclaimed, "Joe tickle Nicowis!!" We could hardly stop laughing.
We drove. And drove. Past the ghosts of mining towns, past the never-ending fields of sagebrush, past the run down purple double-wides that housed brothels. Just seeing those makes you want so scrub your skin off with Purell.
Nick. Was. Incredible. Joe and I were in a perpetual state of awe. He was in heaven with the motion of the car and the sights moving past the window. So awesome!
We got to my mom's house and he did well. When he's in a new environment and feels stressed and out of control, he finds the light switches and flips them on and off. I think it is soothing for him because it is one thing he can control in a vast sea of uncertainty. He did that. A lot. For several days.
The dog added to his stress. Instead of tantruming, though, he ran into either my parents' or my nephew's bedroom, closed the door, and hid under the blankets. I didn't like him experiencing that stress, but he did a great job of finding a positive coping strategy to get through it. Yay Nick!
By the third day, though, he was reaching his limit.
We took a trip to Tahoe. On a Friday. On a holiday weekend.
Horrible plan.
It was stop and go traffic around the lake. Mile after mile, we crept two feet and stopped, crept two feet and stopped. It wasn't just Nick--all four of us were beyond frustrated with the traffic. Eventually we turned around and headed back . . . with one pit stop.
Oh Chocolate Nugget, I love you. Your peanut butter fudge is the bomb. I cannot resist you!
Nick didn't share my love. It all started with a half-open door to a room that said "employees only" on the door. Nick wanted to go in to flip the light switches. I didn't let him. He wanted to close the door because half-open doors really bother him. I wouldn't let him. I steered him toward another part of the store and he kept trying to pull away to go back to the door. I wouldn't let him.
Just when I thought I'd succeeded in distracting him from the door, he started to scream, to pinch, to drop to the floor as dead weight.
It was the first tantrum I'd seen since he'd started the medicine.
Joe took him outside. They walked over to see the giant prospector on the hill--I think he must be a brother of the lumberjack on Stone in Tucson. Nick calmed.
That night we went to my brother's house for dinner. Another dog, another new environment. Nick was a champ again, using coping strategies to avoid the chaos. For about an hour he hung out alone in his cousin's room playing with a Lego City set, and after that he alternated between burying himself in the blankets on my brother's bed and flipping the light switches in the master bath.
The next morning, Nick decided he was done.
He put on his shoes and said to me, "Let's go bye-bye house."
Sure! You used language! I'll do whatever you want!
My dad needed some post-surgery supplies, so I could get Nick out of the house with a Target run.
As we pulled into the Target parking lot, Nick started to scream. When I tried to get him out of the car, he kicked. He hates big box stores, but it was more than that--when he asked to go bye-bye, he was asking to go home, and I took him to the wrong place.
Joe got Nick some Doritos--his current favorite thing in the universe--and drove Nick around while Noah and I quickly shopped. Then it was time to brainstorm what to do to keep Nick happy.
We decided to go to a park. On the way, we stopped at a 7-11 to get some drinks.
Another meltdown. 7-11 is not where Nick wanted to go. Not at all. I drove him around while the guys got the drinks.
The park would make it all better, I was sure. We pulled into the playground at Rancho San Rafael.
Nick played on the equipment for a few minutes, but he just couldn't calm himself. He ran frenetically. He tried to get into the stuff other parents had brought to the park. He tried to run away.
I took him over to a sandy horseshoe pit, thinking the sand would calm him. I was wrong. I took him on a walk around the pond, thinking that would calm him. I was wrong. He kept trying to run into the private party on the pagoda, kept freaking out about the broken drinking fountain, kept trying to get under the ropes blocking off access to the pond.
I steered him back toward the parking lot--it was time to go. We didn't get back in time, though. The tantrum started.
He screamed. He pinched. He fought for dear life. I threw him over one shoulder, wondering if the families at the park would wonder if I was kidnapping him with the way he was fighting against me. Joe had heard the screams long before I made it back to him, so he and Noah were ready to go when Nick and I made it to the parking lot.
Phew.
We left town that night.
It took a couple of days for Nick to recover. He was on edge even though we were home.
My arms are still recovering. I wrenched my neck by sleeping in the car and I was going to get a massage this weekend to loosen it up. But when I took a look at my arms Saturday morning, I was too embarrassed to go let some stranger see my bruises. I looked like a domestic violence victim. I know that I shouldn't care what others think, but the thought of someone I don't know seeing that was too much.
Baby steps. It's about baby steps. Nick is making progress, in his time. His language is coming back. This week he's up to 86 words and 63 requests. He's using sentences like "I want Dorito, please." He's making such great strides.
Maybe, someday, he'll even be ready for a five-day road trip.
Friday, June 29, 2012
Day 11
Here's what my arm looks like now:
You can barely see the remnant of the old bruises. Looking good!
Nick is so very happy. The medicine seems to have calmed his over-active sensory system. Today I vacuumed and he didn't run to hide in his room. May seem like such a simple thing, but for Nick it is huge.
Next week I'm going to try outings to places that stressed Nick out just a few weeks ago, like the lobby of Noah's camp. I think he's ready. Here's to hoping that the medicine makes those unbearable places bearable!
Thank you, all of you, for your support as we've opened this new chapter. I'm humbled by the hundreds of you reading and encouraging us. You strengthen me.
You can barely see the remnant of the old bruises. Looking good!
Nick is so very happy. The medicine seems to have calmed his over-active sensory system. Today I vacuumed and he didn't run to hide in his room. May seem like such a simple thing, but for Nick it is huge.
Next week I'm going to try outings to places that stressed Nick out just a few weeks ago, like the lobby of Noah's camp. I think he's ready. Here's to hoping that the medicine makes those unbearable places bearable!
Thank you, all of you, for your support as we've opened this new chapter. I'm humbled by the hundreds of you reading and encouraging us. You strengthen me.
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