Baby L said my name this past weekend. "Mom mom mom mom." It was unmistakable. For months he's insisted on calling both of his parents "Dad," which may have been a baby protest of normative gender roles or something. But this weekend, he finally said "Mom."
His language--both verbal and non-verbal, both receptive and expressive--is blossoming, and it is exciting to watch this miracle unfold. He points to what he wants and sometimes pairs it with words (to go outside, for instance, he points to the back door and says "side"). He's also mastered saying when he wants more of something or when he's done. Without prompting, he signs "more" when he wants more, and when he's done, he puts his hands in the air and says "dah, dah, dah" for "done." And every time he communicates with me, I get choked up. It's so amazing, so amazing.
Yet the beauty can be bittersweet. The other night, Beh was taking a shower, and I stepped in the room to see how he was doing.
"Do you want more shower, or are you all done?" I asked as L pulled himself up to the side of the tub, interested as always in what his brother was doing.
Beh had a perplexed look on his face, like he knew I was asking something and wanted a response from him, but he had no clue how to give me what I sought.
"Do you want more shower," I said as I signed more, "or are you all done," I said, again with the sign paired with my words.
Beh was still completely lost.
"Do you want shower on or shower off?" I thought different words might help him find his voice. I said it again.
"Shower off," said Beh. I really didn't know if he said it to communicate, or if he was just echoing me, but I took it as communication.
I leaned down to move L's hands from the edge of the tub so that Beh could open the shower door. L, this tiny boy who loves his big brother so much that he wants to always be with him and do whatever he is doing, gave me a bit of a fight. He didn't want to move even one inch away from Beh. As I gently moved him, I looked at him, and my heart broke a little bit. Here was this fourteen-month old who could do something that his nine-year-old brother has to fight--HARD--to do every day. Concepts like "more" and "done" are simultaneously so simple that a baby can master them and so challenging that a fourth grader has to give all the fight he has to grasp them. My heart hurt for Beh, that he had to fight so hard to grasp something so many of us take for granted.
I turned the water off and Beh giggled as he burrowed himself into his towel. L bounced up and down, squealing in glee at the sound of his brother's laugh. I looked at them again, and this time, instead of feeling the bittersweetness of L being able to express things that Beh can't, I felt hope. L doesn't look at Beh and see autism; he doesn't look at him and see limitations. He sees someone he wants to be just like. There's an ineffable beauty in such unconditional love. It is a love dependent in no way on words; it is a love that I know will follow Beh through his lifetime. When he can't find the words, his little brother will be there to help him find his voice. L sharing the language he's building be a voice for Nick . . . I can't imagine a more beautiful gift a brother could give.
Thursday, October 9, 2014
Tuesday, August 5, 2014
Summer Time Blues
I loaded and ran my dishwasher yesterday morning. It was awesome!
You make think that's sarcasm--it's so not. Being able to run my dishwasher without someone having an OCD meltdown is nothing short of miraculous. And it would not have been possible without the arrival of the back to school fairy.
Let's jump back in time to winter. Beh was doing well, exceptionally well, in every area of his life. His language was blossoming, his academics were thriving, and his behaviors were nearly non-existent. In our nine years of wrestling with the challenges of autism, this moment in Beh's life was the best of them all. Sure, he was still autistic, but the beauty of his autism took center stage rather than the challenges. Every afternoon when I took his daily sheet out of his backpack and read about his school day, I was overcome with pride. My kid was doing so well! And knowing how hard he had worked to get to that place made it all the more sweet.
Then the rain came down.
It's one of those things as a mother you kick yourself for. If I'd only know how this would have affected my child, I would have done it all differently. But the thing is, you don't know; there's no way to know. But you kick yourself nonetheless.
My mother-in-law was diagnosed with breast cancer. There wasn't a doubt or a moment's hesitation in my mind--she needed to move here, move in with us, so that she could get the best treatment possible.
It was sure to be a big transition for Beh, but he was doing so incredibly well that I was certain he'd do incredibly well with this change.
Then she arrived. Her second night here, she asked if she could invite a couple of people over for dinner. Sure, no problem. Beh had been doing so well that he'd do well with this, too.
Early on, he felt his space encroached upon, so he took one guest by the hand and led him to the door, his way of saying “please leave my house.” I let him know that our guests were staying, and he was fine; he used other coping strategies. At dinner time, having three extra people at the table, crowding his space, was too much for him, so again he did something that made me proud—he took his plate to the counter and stood there to eat. Great coping strategy. Then my mother-in-law violated his space again, coming over to him when he’d clearly made an effort to get away from everyone. Beh hadn't started on his carrots yet (he usually eats his foods one item at a time), and for some reason my mother-in-law thought it was her job to interrupt his chicken eating to try to get him to eat his carrots. That's when the worst thing happened--she touched his food. You don't do that to Beh; he thinks you're taking it.
He’d done so well utilizing all his strategies, but this was too much—and he pinched her arm.
And she slapped him.
That one slap started a downward spiral that Beh couldn't stop. Everything in his world unraveled. He lost his words, his school performance dramatically declined, and his behaviors increased. It was worsened by my mother-in-law every day violating his routines and messing with the fans he felt the need to control. He became extremely obsessive-compulsive.
A study recently published in the journal Autism found that people with HFA/Asperger's feel anxious about 50% of the time while people with neurotypical brains feel anxious only about 7% of the time. I would imagine that for Beh, whose autism is much more severe than someone classified as HFA, the anxiety percentage is even greater. So throw all of this stuff on someone who is already anxious, and it's no wonder that he becomes more aggressive. Any of us would if we were choked by anxiety and had no words to communicate that to someone else.
Then summer arrived. Beh doesn't qualified for extended school year (something that still boggles my mind), and without the predictable structure of school, the fabric holding together his little world unravels more. All of his medical data and behavioral records show the same thing--summers suck for Beh. Anxiety increases, behaviors increase.
It was a perfect storm. Not only did my mother-in-law's presence and the loss of a school routine upend Beh, but he also lost his only habilitator and respite provider in early July.
What that meant was me and three kids, locked in the house all day. Beh's aggressions had increased so much that there was no way I could chance taking the boys anywhere. Even the short ride to drop N. off at his screenwriting class in June had agitated Beh. He was so freaked out by it, even though he didn't even have to get out of the car, that he would pull my hair, as hard as he could, from the backseat. So when July came and we lost the only person who could watch Beh while I got out of the house for a few minutes, we stayed in the house. All day. Every day. I was the target for Beh's frustrations--whenever something went wrong in his little world, he sought me out and dug his fingernails into my arms as hard as he could. Having someone you love hurt you all the time . . . there aren't words. The house began to feel like a prison, but I didn't know what else we could do.
I felt like I was starting to drown. Things that I would normally be able to cope with more effectively became the cliche back-breaking straw. When my mother-in-law said that if we were only able to beat Beh without the authorities going after us, he wouldn't act out any more, I lost it. It was punch a grandma with cancer or have a mini-meltdown, so I opted for the latter. LOL, but I only had the luxury of sitting in my closet alone for five minutes to have that breakdown because, you know, kids. I figured it would be good to start seeing a therapist because a meltdown wouldn't fit into my schedule, but the irony was that even though I found someone nearby, I could never actually go see her because, you know, kids.
Why on Earth do I share all this? A friend on Facebook inspired me a couple of weeks ago. As autism moms, we tend to focus so much on the victories. My son ate a green bean! My daughter spoke a full sentence! And the positives are good; they are what keep us afloat in the rough sea of autism. Quite frankly, though, there's a lot of shit in that sea. Researchers find that the stress an autism mom experiences is similar to that of a combat soldier. We don't like to talk about it because we want to focus on our children's successes, but it is there nonetheless. And I think it's about time we acknowledge it along with the victories.
Speaking of those victories, I got to run my dishwasher. The three lights on the front of my new dishwasher have been too much for Beh's OCD to handle. He wants all three lights on all the time, but when the cycle is running, there is only one light on at a time, indicating which stage the cycle is at. Simply turning on the dishwasher prompts an aggressive meltdown, one that doesn't end until he can open the dishwasher and stop the cycle. I've resorted to washing my dishes in the middle of the night.
But I did dishes. At 8 o'clock in the morning. We've got some work to do to help Beh through his anxiety and OCD, and we have a new medicine plan and the routine of school to help with that. While we wait for all those pieces to fall back together for him, I have this dishwashing-gem to carry me. Might seem like a crazy thing to be excited about, but right now it's the greatest thing ever.
You make think that's sarcasm--it's so not. Being able to run my dishwasher without someone having an OCD meltdown is nothing short of miraculous. And it would not have been possible without the arrival of the back to school fairy.
Let's jump back in time to winter. Beh was doing well, exceptionally well, in every area of his life. His language was blossoming, his academics were thriving, and his behaviors were nearly non-existent. In our nine years of wrestling with the challenges of autism, this moment in Beh's life was the best of them all. Sure, he was still autistic, but the beauty of his autism took center stage rather than the challenges. Every afternoon when I took his daily sheet out of his backpack and read about his school day, I was overcome with pride. My kid was doing so well! And knowing how hard he had worked to get to that place made it all the more sweet.
Then the rain came down.
It's one of those things as a mother you kick yourself for. If I'd only know how this would have affected my child, I would have done it all differently. But the thing is, you don't know; there's no way to know. But you kick yourself nonetheless.
My mother-in-law was diagnosed with breast cancer. There wasn't a doubt or a moment's hesitation in my mind--she needed to move here, move in with us, so that she could get the best treatment possible.
It was sure to be a big transition for Beh, but he was doing so incredibly well that I was certain he'd do incredibly well with this change.
Then she arrived. Her second night here, she asked if she could invite a couple of people over for dinner. Sure, no problem. Beh had been doing so well that he'd do well with this, too.
Early on, he felt his space encroached upon, so he took one guest by the hand and led him to the door, his way of saying “please leave my house.” I let him know that our guests were staying, and he was fine; he used other coping strategies. At dinner time, having three extra people at the table, crowding his space, was too much for him, so again he did something that made me proud—he took his plate to the counter and stood there to eat. Great coping strategy. Then my mother-in-law violated his space again, coming over to him when he’d clearly made an effort to get away from everyone. Beh hadn't started on his carrots yet (he usually eats his foods one item at a time), and for some reason my mother-in-law thought it was her job to interrupt his chicken eating to try to get him to eat his carrots. That's when the worst thing happened--she touched his food. You don't do that to Beh; he thinks you're taking it.
He’d done so well utilizing all his strategies, but this was too much—and he pinched her arm.
And she slapped him.
That one slap started a downward spiral that Beh couldn't stop. Everything in his world unraveled. He lost his words, his school performance dramatically declined, and his behaviors increased. It was worsened by my mother-in-law every day violating his routines and messing with the fans he felt the need to control. He became extremely obsessive-compulsive.
A study recently published in the journal Autism found that people with HFA/Asperger's feel anxious about 50% of the time while people with neurotypical brains feel anxious only about 7% of the time. I would imagine that for Beh, whose autism is much more severe than someone classified as HFA, the anxiety percentage is even greater. So throw all of this stuff on someone who is already anxious, and it's no wonder that he becomes more aggressive. Any of us would if we were choked by anxiety and had no words to communicate that to someone else.
Then summer arrived. Beh doesn't qualified for extended school year (something that still boggles my mind), and without the predictable structure of school, the fabric holding together his little world unravels more. All of his medical data and behavioral records show the same thing--summers suck for Beh. Anxiety increases, behaviors increase.
It was a perfect storm. Not only did my mother-in-law's presence and the loss of a school routine upend Beh, but he also lost his only habilitator and respite provider in early July.
What that meant was me and three kids, locked in the house all day. Beh's aggressions had increased so much that there was no way I could chance taking the boys anywhere. Even the short ride to drop N. off at his screenwriting class in June had agitated Beh. He was so freaked out by it, even though he didn't even have to get out of the car, that he would pull my hair, as hard as he could, from the backseat. So when July came and we lost the only person who could watch Beh while I got out of the house for a few minutes, we stayed in the house. All day. Every day. I was the target for Beh's frustrations--whenever something went wrong in his little world, he sought me out and dug his fingernails into my arms as hard as he could. Having someone you love hurt you all the time . . . there aren't words. The house began to feel like a prison, but I didn't know what else we could do.
I felt like I was starting to drown. Things that I would normally be able to cope with more effectively became the cliche back-breaking straw. When my mother-in-law said that if we were only able to beat Beh without the authorities going after us, he wouldn't act out any more, I lost it. It was punch a grandma with cancer or have a mini-meltdown, so I opted for the latter. LOL, but I only had the luxury of sitting in my closet alone for five minutes to have that breakdown because, you know, kids. I figured it would be good to start seeing a therapist because a meltdown wouldn't fit into my schedule, but the irony was that even though I found someone nearby, I could never actually go see her because, you know, kids.
Why on Earth do I share all this? A friend on Facebook inspired me a couple of weeks ago. As autism moms, we tend to focus so much on the victories. My son ate a green bean! My daughter spoke a full sentence! And the positives are good; they are what keep us afloat in the rough sea of autism. Quite frankly, though, there's a lot of shit in that sea. Researchers find that the stress an autism mom experiences is similar to that of a combat soldier. We don't like to talk about it because we want to focus on our children's successes, but it is there nonetheless. And I think it's about time we acknowledge it along with the victories.
Speaking of those victories, I got to run my dishwasher. The three lights on the front of my new dishwasher have been too much for Beh's OCD to handle. He wants all three lights on all the time, but when the cycle is running, there is only one light on at a time, indicating which stage the cycle is at. Simply turning on the dishwasher prompts an aggressive meltdown, one that doesn't end until he can open the dishwasher and stop the cycle. I've resorted to washing my dishes in the middle of the night.
But I did dishes. At 8 o'clock in the morning. We've got some work to do to help Beh through his anxiety and OCD, and we have a new medicine plan and the routine of school to help with that. While we wait for all those pieces to fall back together for him, I have this dishwashing-gem to carry me. Might seem like a crazy thing to be excited about, but right now it's the greatest thing ever.
Tuesday, July 29, 2014
Neurotypical Kids Are Weird: One Year of Little L.
(I was going to post this two weeks ago, in honor of L's first birthday, but getting a turn on my laptop when I've got a house full of boys on summer vacation is nearly impossible, lol.)
I was prepared for everything possible with this baby . . . except maybe neurotypicality.
I don't think there was ever as much critical thinking that went into having a baby as there was with L. His brothers are on the autism spectrum, of course, so when my husband first mentioned the idea of having a kiddo, I had to think about a lot of things.
First there was a lot of information gathering. My doctor sent me to a specialist who ran me through a full battery of test and history collection. In the end, she said there was only about a 1% chance that we'd have a child with autism. That was pretty good odds. Not that I'd have a problem loving another child with autism--it's just that resources have their limits, and therapy schedules for three children would be much harder to juggle.
But we weren't in the clear, though. She wasn't concerned about autism, but she was concerned about other things, like Down Syndrome, because of my "advanced maternal age" (that was a fun term following me along on my medical charts throughout the pregnancy). They did more test, though, and I apparently had "the eggs of a teenager," according to the doctor. Sweet.
I felt like we were clearing every hurdle and that there was just one more ahead. If the baby was a girl, I felt like we'd be home free. Autism risks are much higher in boys; in my mind, I thought that if we had a girl she'd be safer from the struggles her brothers had encountered.
I cried a little when the sonogram tech said "It's a boy!" I didn't cry because I was disappointed--I love little boys and honestly would not know what to do with a little girl--but it was because I was scared for him. I wanted this baby I had yet to meet to be as safe as possible from everything. And here was one thing I had less control to protect him from.
Within half an hour that fear turned to resolve--if baby had autism, we were the perfect family for him to be born into. He'd have autism pros for parents and have so much love. Game on--let's do this.
Finally he was here, a little boy who looked ever so much like his daddy. And, well, I watched for every sign.
I know the developmental milestones; it's like they are tattooed to the surface of my brain because my life has been about trying to get Beh to reach them. And Baby L was reaching them, all on his own.
He made eye contact.
He started smiling a social smile.
He recognized himself in the mirror.
He started waving and saying something sounding like "hi."
He threw a ball.
I was overcome with the miracle of all these things. The years of trying to get Beh to make eye contact. The years of sitting on the bathroom counter, trying to get Beh to see the child in the mirror and recognize him as himself. The eight years of trying to teach him to say "hi" and "goodbye."
With every little milestone I was choked up with tears. I wanted to shout it to the world: "My baby smiled! My baby waved!"
People were like, "Yeah, that's nice," as if it were some normal thing.
You don't get it. HOW COULD YOU THINK THIS WAS A NORMAL THING? THIS IS A MIRACLE!! We're talking Jesus walking on water miracle, here. Everything L does is a MIRACLE.
I'm so thankful that I didn't have a neurotypical child first, that autism is my normal, because there's no way that I would be able to identify the miraculous, be able to treasure it, if I thought miracles were the status quo.
Of course, along with the miracles are challenges. I know that this is going to sound strange, but parenting a neurotypical baby is so much harder than parenting a baby with autism.
I remember having this moment in Beh's nursery, all those years ago, when I thought that God didn't think that much of me. A friend of mine had endured so many challenges--two children with a variety of health concerns requiring surgery, a husband who passed away. Something that came up in conversations we had was this idea that God only gives you what you could handle, and that God must've thought she was an amazing woman of great strength because he entrusted her to carry so much.
I stood there next to Beh's crib, struck by how different my experience was. God gave me the perfect baby. He didn't fuss. When he woke up in the morning, he sat up in his crib entertaining himself, never crying out for a parent. When I put him to bed at night, he never cried for a parent to stay. He was such an easy baby. I must not have been worthy of carrying much because I had no load to carry at all.
Ha.
Another autism mom and I were talking about this the other day. Like me, she had a child with autism before having a neurotypical child. And we both agreed that parenting a neurotypical toddler was so. much. harder.
Beh didn't cry because he didn't have that craving for social interaction. He entertained himself because he didn't really have much need for others. Had I known then what I know now, I would have seen that as a giant red autism flag.
But neurotypical babies . . . wow. Never has caring for a baby been so much work. L wants constant interaction and entertainment. He wants to be an active part of the world, not an observer of it. I'm exhausted, LOL. It's weird and lovely and exciting and beautiful.
I was prepared for everything possible with this baby . . . except maybe neurotypicality.
I don't think there was ever as much critical thinking that went into having a baby as there was with L. His brothers are on the autism spectrum, of course, so when my husband first mentioned the idea of having a kiddo, I had to think about a lot of things.
First there was a lot of information gathering. My doctor sent me to a specialist who ran me through a full battery of test and history collection. In the end, she said there was only about a 1% chance that we'd have a child with autism. That was pretty good odds. Not that I'd have a problem loving another child with autism--it's just that resources have their limits, and therapy schedules for three children would be much harder to juggle.
But we weren't in the clear, though. She wasn't concerned about autism, but she was concerned about other things, like Down Syndrome, because of my "advanced maternal age" (that was a fun term following me along on my medical charts throughout the pregnancy). They did more test, though, and I apparently had "the eggs of a teenager," according to the doctor. Sweet.
I felt like we were clearing every hurdle and that there was just one more ahead. If the baby was a girl, I felt like we'd be home free. Autism risks are much higher in boys; in my mind, I thought that if we had a girl she'd be safer from the struggles her brothers had encountered.
I cried a little when the sonogram tech said "It's a boy!" I didn't cry because I was disappointed--I love little boys and honestly would not know what to do with a little girl--but it was because I was scared for him. I wanted this baby I had yet to meet to be as safe as possible from everything. And here was one thing I had less control to protect him from.
Within half an hour that fear turned to resolve--if baby had autism, we were the perfect family for him to be born into. He'd have autism pros for parents and have so much love. Game on--let's do this.
Finally he was here, a little boy who looked ever so much like his daddy. And, well, I watched for every sign.
I know the developmental milestones; it's like they are tattooed to the surface of my brain because my life has been about trying to get Beh to reach them. And Baby L was reaching them, all on his own.
He made eye contact.
He started smiling a social smile.
He recognized himself in the mirror.
He started waving and saying something sounding like "hi."
He threw a ball.
I was overcome with the miracle of all these things. The years of trying to get Beh to make eye contact. The years of sitting on the bathroom counter, trying to get Beh to see the child in the mirror and recognize him as himself. The eight years of trying to teach him to say "hi" and "goodbye."
With every little milestone I was choked up with tears. I wanted to shout it to the world: "My baby smiled! My baby waved!"
People were like, "Yeah, that's nice," as if it were some normal thing.
You don't get it. HOW COULD YOU THINK THIS WAS A NORMAL THING? THIS IS A MIRACLE!! We're talking Jesus walking on water miracle, here. Everything L does is a MIRACLE.
I'm so thankful that I didn't have a neurotypical child first, that autism is my normal, because there's no way that I would be able to identify the miraculous, be able to treasure it, if I thought miracles were the status quo.
Of course, along with the miracles are challenges. I know that this is going to sound strange, but parenting a neurotypical baby is so much harder than parenting a baby with autism.
I remember having this moment in Beh's nursery, all those years ago, when I thought that God didn't think that much of me. A friend of mine had endured so many challenges--two children with a variety of health concerns requiring surgery, a husband who passed away. Something that came up in conversations we had was this idea that God only gives you what you could handle, and that God must've thought she was an amazing woman of great strength because he entrusted her to carry so much.
I stood there next to Beh's crib, struck by how different my experience was. God gave me the perfect baby. He didn't fuss. When he woke up in the morning, he sat up in his crib entertaining himself, never crying out for a parent. When I put him to bed at night, he never cried for a parent to stay. He was such an easy baby. I must not have been worthy of carrying much because I had no load to carry at all.
Ha.
Another autism mom and I were talking about this the other day. Like me, she had a child with autism before having a neurotypical child. And we both agreed that parenting a neurotypical toddler was so. much. harder.
Beh didn't cry because he didn't have that craving for social interaction. He entertained himself because he didn't really have much need for others. Had I known then what I know now, I would have seen that as a giant red autism flag.
But neurotypical babies . . . wow. Never has caring for a baby been so much work. L wants constant interaction and entertainment. He wants to be an active part of the world, not an observer of it. I'm exhausted, LOL. It's weird and lovely and exciting and beautiful.
Saturday, July 5, 2014
The One Where Mom Starts Crying in the Middle of an Eval
Today Beh had the evaluation for his augmentative communication device. It's been a long, long painful wait to get to this point. So many stops and starts, even this week when his original appointment got rescheduled (I gave my appointment to another mom who had been waiting over a year and was going to have to wait yet another month for an appointment because her family was going out of town).
The eval team was a speech therapist and an occupational therapist. And they, wow, they knew their stuff. I don't just mean technology. They knew autism, they knew Beh--even though they'd just met him, they had an uncanny ability to read him and interpret his behaviors.
The speech therapist pulled out the first device to try and said one simple sentence about how Beh could push this button on this screen to communicate. I don't really know what the exact sentence was, but it made me start crying. Right there on my table, in tangible form, was the gateway we'd been searching for for so long. And her one sentence made it sound so simple. Beh just needed to push X and, BOOM, communication. My baby could have a voice, after nine years of searching for it. All of it, in the reach of our grasp, finally. The hope, the relief, the love were too much for my heart to contain and poured out in tears. LOL, it was embarrassing. I choked out an apology, saying that it was just that we'd hoped for this for so long. "Don't apologize," the OT said, "This is what we're here for."
I composed myself, and we got to work. We went through several devices, all of which were tablet-based. The challenge was finding one that didn't lead to too much stimming due to Beh's hyperlexia. We had to actually hide a few buttons because he was stimming so much (he especially liked hitting "the" and the pluralizing "s" button because it threw the software off--it would simply spell out T-H-E-S because it did not know how to pronounce the nonsense word).
We finally found a good fit for Beh's needs. It's the Accent 800 with Word Power software. It's about the size of an iPad mini. It's so cool. It relies on pictures paired with words because the words alone were too much to stim on for Beh. Here it is:
This baby is $5,995 of awesome. He'll be able to take it with him wherever he goes.
It will be awhile still before that happens, though. There's still a lot more waiting. First, the claim will be submitted to our primary insurance, and they have 60 days to deny the claim, approve the claim, or approve a portion of the claim. After that, the claim for any remainder the private insurance doesn't cover will be submitted to Medicaid, and they have 30 days to decide (which shouldn't be a problem since the state already approved the device). So we have up to 90 days of just waiting on the insurance.
If all goes well there, we enter the training phase. It is going to take a lot of time to teach Beh how to use the software to communicate. Everyone on Beh's team--therapists, behavior coaches, teachers, parents--will need to be trained on how to help Beh communicate with it.
But today I'm not thinking about all the work that is before us; today I'm just basking in thankfulness and peace because this leg of the race is over. No more fighting and wrangling to make this happen. All of that ugliness is done. We have hope and a promise for the future. We have an Accent 800 :)
The eval team was a speech therapist and an occupational therapist. And they, wow, they knew their stuff. I don't just mean technology. They knew autism, they knew Beh--even though they'd just met him, they had an uncanny ability to read him and interpret his behaviors.
The speech therapist pulled out the first device to try and said one simple sentence about how Beh could push this button on this screen to communicate. I don't really know what the exact sentence was, but it made me start crying. Right there on my table, in tangible form, was the gateway we'd been searching for for so long. And her one sentence made it sound so simple. Beh just needed to push X and, BOOM, communication. My baby could have a voice, after nine years of searching for it. All of it, in the reach of our grasp, finally. The hope, the relief, the love were too much for my heart to contain and poured out in tears. LOL, it was embarrassing. I choked out an apology, saying that it was just that we'd hoped for this for so long. "Don't apologize," the OT said, "This is what we're here for."
I composed myself, and we got to work. We went through several devices, all of which were tablet-based. The challenge was finding one that didn't lead to too much stimming due to Beh's hyperlexia. We had to actually hide a few buttons because he was stimming so much (he especially liked hitting "the" and the pluralizing "s" button because it threw the software off--it would simply spell out T-H-E-S because it did not know how to pronounce the nonsense word).
We finally found a good fit for Beh's needs. It's the Accent 800 with Word Power software. It's about the size of an iPad mini. It's so cool. It relies on pictures paired with words because the words alone were too much to stim on for Beh. Here it is:
This baby is $5,995 of awesome. He'll be able to take it with him wherever he goes.
It will be awhile still before that happens, though. There's still a lot more waiting. First, the claim will be submitted to our primary insurance, and they have 60 days to deny the claim, approve the claim, or approve a portion of the claim. After that, the claim for any remainder the private insurance doesn't cover will be submitted to Medicaid, and they have 30 days to decide (which shouldn't be a problem since the state already approved the device). So we have up to 90 days of just waiting on the insurance.
If all goes well there, we enter the training phase. It is going to take a lot of time to teach Beh how to use the software to communicate. Everyone on Beh's team--therapists, behavior coaches, teachers, parents--will need to be trained on how to help Beh communicate with it.
But today I'm not thinking about all the work that is before us; today I'm just basking in thankfulness and peace because this leg of the race is over. No more fighting and wrangling to make this happen. All of that ugliness is done. We have hope and a promise for the future. We have an Accent 800 :)
Monday, June 2, 2014
He Listens Like Spring and Melts Down Like June, Hey Hey
It's the little things that you forget cause the most trauma. But they do, especially when it's June.
June is historically Beh's roughest month. He loses all the comfort of routine that the school year provides and is cast into an abyss of uncertainty. On the days when he can just stay home with no demands upon him, he's fine. But toss anything at him that varies from the routines he lives by, and he's lost in a tornado of fear.
And it's the stupid little things that cause that fear, the things other mothers take for granted as simple tasks.
Today it was taking N to camp. It was his first day, and the respite provider scheduled to work with Beh was sick. I had to take all three boys.
I prepped N. the night before. We went over the campus map over and over again so that he'd know where to go because I knew getting Beh out of the car and walking him around an unfamiliar school would be too traumatic. I hated that I wouldn't be able to walk N to his classroom, but he is 13 now and can handle it.
I talked Beh through the morning. We were dropping N off, not him. We'd come right back to the house. We'd go back at 11.
Everything was fine until our car approached an unfamiliar school and Beh freaked out. I reminded him that we were dropping off his brother, not him, and that everything would be ok. But words have a hard time reaching someone who is overcome with fear. Beh screamed. He pulled on my hair from the back seat. He kicked. He was so afraid.
When we got home, it took 30 minutes to get him out of the car. I honestly don't know how I'm going to get him back into the car to pick up his brother. No clue.
Will you please do me a favor today? When you run an errand or make a quick stop at the grocery with your kids in tow, will you be thankful? Will you embrace the miracle that being able to so is? Will you lift up a prayer of thankfulness to your deity for the beauty of the mundane? Because, I promise, Beh would love to be able to do those things without being overwhelmed with a fear few of us can understand. Be thankful for those tiny miracles.
June is historically Beh's roughest month. He loses all the comfort of routine that the school year provides and is cast into an abyss of uncertainty. On the days when he can just stay home with no demands upon him, he's fine. But toss anything at him that varies from the routines he lives by, and he's lost in a tornado of fear.
And it's the stupid little things that cause that fear, the things other mothers take for granted as simple tasks.
Today it was taking N to camp. It was his first day, and the respite provider scheduled to work with Beh was sick. I had to take all three boys.
I prepped N. the night before. We went over the campus map over and over again so that he'd know where to go because I knew getting Beh out of the car and walking him around an unfamiliar school would be too traumatic. I hated that I wouldn't be able to walk N to his classroom, but he is 13 now and can handle it.
I talked Beh through the morning. We were dropping N off, not him. We'd come right back to the house. We'd go back at 11.
Everything was fine until our car approached an unfamiliar school and Beh freaked out. I reminded him that we were dropping off his brother, not him, and that everything would be ok. But words have a hard time reaching someone who is overcome with fear. Beh screamed. He pulled on my hair from the back seat. He kicked. He was so afraid.
When we got home, it took 30 minutes to get him out of the car. I honestly don't know how I'm going to get him back into the car to pick up his brother. No clue.
Will you please do me a favor today? When you run an errand or make a quick stop at the grocery with your kids in tow, will you be thankful? Will you embrace the miracle that being able to so is? Will you lift up a prayer of thankfulness to your deity for the beauty of the mundane? Because, I promise, Beh would love to be able to do those things without being overwhelmed with a fear few of us can understand. Be thankful for those tiny miracles.
Thursday, May 15, 2014
Blogless
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.
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.
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.
Sunday, June 24, 2012
Day Four
Here's my arm on Day Four. Noah used to say this collection of bruises looked like a smiley face because it had two big bruises for eyes, a big bruise for a nose, and several smaller bruises in a crescent shape for a mouth (compare to Day One picture). The mouth is gone!
Thursday, June 21, 2012
Day Three
Today I slept in. Today I painted my toenails. Today I wrote three pages, finishing a chapter. Today I--most shocking of all--took a nap.
Freakish things like this just *don't* happen in my world. Ever.
Nick had a good day. A wonderfully uneventful day spent playing, sitting up against mom on the couch, reading books, and eating.
Ahhh.
Nick is calmer, more content. But he's still Nick. Retaining his "Nickness" is something I was thinking a lot about today when I was writing. I was working on a passage about Ari Ne’eman and the rhetoric of war in the autism debate. On one side we have Ne'eman speaking of his concern that "curing" autism is a form of genocide, and on the other side we have Jenny McCarthy and Autism Speaks waging war on autism. I know that by choosing to medicate Nicholas that I've jumped into a battlefield.
I don't want to erase who Nicholas is. His autism is part of him and it has a unique beauty. I love the way he gets things he's interested in right in front of his eyes and deeply examines them. I love that he wants to drink in every sensory experience far more deeply than most of us ever imagined possible.
But I also like that during the past two days it's been my eyes that he's been drawing close to his and absorbing every minute detail. I like that he'll squeeze me to get the sensory input that he needs, but not squeeze so hard that it hurts.
Ne'eman says we should focus on quality of life instead of cure, and I hoping my choices will do just that for Nick, give him the quality of life he deserves.
Freakish things like this just *don't* happen in my world. Ever.
Nick had a good day. A wonderfully uneventful day spent playing, sitting up against mom on the couch, reading books, and eating.
Ahhh.
Nick is calmer, more content. But he's still Nick. Retaining his "Nickness" is something I was thinking a lot about today when I was writing. I was working on a passage about Ari Ne’eman and the rhetoric of war in the autism debate. On one side we have Ne'eman speaking of his concern that "curing" autism is a form of genocide, and on the other side we have Jenny McCarthy and Autism Speaks waging war on autism. I know that by choosing to medicate Nicholas that I've jumped into a battlefield.
I don't want to erase who Nicholas is. His autism is part of him and it has a unique beauty. I love the way he gets things he's interested in right in front of his eyes and deeply examines them. I love that he wants to drink in every sensory experience far more deeply than most of us ever imagined possible.
But I also like that during the past two days it's been my eyes that he's been drawing close to his and absorbing every minute detail. I like that he'll squeeze me to get the sensory input that he needs, but not squeeze so hard that it hurts.
Ne'eman says we should focus on quality of life instead of cure, and I hoping my choices will do just that for Nick, give him the quality of life he deserves.
Wednesday, June 20, 2012
Day Two
It's the second day of resperidone, and again we have a dramatic decrease in behaviors. The only aggression I saw today was when Nick was looking over his brother's shoulder, excitedly watching him play a video game, and something set him off. Maybe Noah had shoved him away or something, which annoyed Nick--you know how brothers can be. Whatever caused, it, Nick tried to pinch his brother, but he did calm quickly after I intervened.
What we did see today was a side-effect: drowsiness. Nick had his morning dose and about two hours later he climbed into bed.
He slept for almost five hours.
And this is a kid who never, ever naps.
I had to cancel two therapy session because I couldn't get him to wake up. I laid down with him on and off during the five hours, in part because I was keeping an eye on how he was doing and in part because, as Joe said when he came into the room to check on us, "You never get to do this." Nick loves to be on my lap, but he's so squirmy that I never get to gently snuggle him like most moms get to snuggle their babies.
We'll see if he sleeps tonight--my guess is no!
 |
| Waking up from his long summer's nap. |
What we did see today was a side-effect: drowsiness. Nick had his morning dose and about two hours later he climbed into bed.
He slept for almost five hours.
And this is a kid who never, ever naps.
I had to cancel two therapy session because I couldn't get him to wake up. I laid down with him on and off during the five hours, in part because I was keeping an eye on how he was doing and in part because, as Joe said when he came into the room to check on us, "You never get to do this." Nick loves to be on my lap, but he's so squirmy that I never get to gently snuggle him like most moms get to snuggle their babies.
We'll see if he sleeps tonight--my guess is no!
Tuesday, June 19, 2012
Hope
As I wrote on Sunday, Nick has been falling apart. Of course, "falling apart" is putting it oh so mildly.
And so I scheduled an appointment with his pediatrician. We have, beyond a doubt, the most amazing pediatrician in the world. Our old pediatrician was afraid of the kids and would walk into the room, quickly do his exam, and run out. It would've been comical if it hadn't been so frustrating. But Dr. Miller, she adores the boys and understands them. Her face brightens during our appointments and she always tells me that seeing Nick makes her day. She's awesome.
I showed her my bruises. I cried a little and she gave me tissues. She was beyond reassuring. "You are an incredible mother. Every time I see you I'm amazed by you. You have so much to manage, and you do it all glamorously. I wouldn't be able to do what you do."
We talked about options for medications, and rather than just throwing a prescription at him, she wanted to research and ask doctors who specialized in autism what the best course of treatment would be. "I don't want to harm him by trying to help him," she said. I was grateful for that; our old pediatrician blindly wrote prescriptions, with some horrific consequences.
She called later and told me that after conferring with colleagues she thought the best course of action was to get me into see a developmental pediatrician at the Melmed Center.
The Melmed Center is one of the premiere autism treatment centers in the nation. When Nick was two and we were living in Tucson, I drove the two hours to get Nick his initial diagnosis from the Melmed Center. They are incredible at what they do, which means they are busy.
Their first available appointments are in November.
Our awesome pediatrician called them and was able to get us an appointment for Monday.
The doctor at the Melmed Center was in awe: "I see mothers with bruises all the time, but in my ten years here I've never seen anything like that before." Randomly throughout the appointment she would stop and say things like, "he did all of that?" Do I get a trophy for Most Astounding Bruises? Because that would rule.
A thorough two hour appointment, and the result was this: a prescription for risperidone.
Risperidone, a medicine long-used for other illnesses, was approved as a treatment for tantrums, aggression, or self-injurious behavior in children with autism in 2007. Our doctor at the Melmed Center was part of the trial conducted by SAARC that led to its approval as a treatment for autism, so she really knows her stuff when it comes to this drug. Research shows a 69% improvement in irritability and aggression. There are some side effects, but the main one--weight gain--is something Nick really, really needs, so it's actually a bonus.
Nick had his first dose today, and even with that first dose, he's changed. Calm. Happy. He's not zoned out, as I was afraid he would be, but rather he is alert and engaged. Not a single pinch since he took the first dose, and that after a morning where he was so agitated that I called to cancel his speech appointment because I didn't want him to maul his therapist. There's an almost eerie silence--I'm so used to screams that it seems wrong when I don't hear them.
Medicating Nick was not something I did lightly. It's taken me a long time to get this point. I did not do it for me--I did it for Nick's quality of life. His fears, and the aggression that stems from them, are limiting his happiness and what he can do in life. I want to see him be able to go to a camp for children with disabilities and not get kicked out the first day because the staff can't handle him. I want him to be able to go to the store and not be petrified of the loud burst of air-conditioned cool that hits him as soon at the automatic doors slide open. I want him to have a full life. I know it's not a panacea, and I know that research says behaviors return as soon as the child stops taking risperidone, but it will give him a chance to feel at peace right now, for the first time since toddlerhood.
I want to track the effectiveness of the medication, and I figured the best indicator would be my arms. So I'm going to take pictures of them every day so that I can see, literally, how effective the medicine is over time. Here's our baseline, Day 1:
And so I scheduled an appointment with his pediatrician. We have, beyond a doubt, the most amazing pediatrician in the world. Our old pediatrician was afraid of the kids and would walk into the room, quickly do his exam, and run out. It would've been comical if it hadn't been so frustrating. But Dr. Miller, she adores the boys and understands them. Her face brightens during our appointments and she always tells me that seeing Nick makes her day. She's awesome.
I showed her my bruises. I cried a little and she gave me tissues. She was beyond reassuring. "You are an incredible mother. Every time I see you I'm amazed by you. You have so much to manage, and you do it all glamorously. I wouldn't be able to do what you do."
We talked about options for medications, and rather than just throwing a prescription at him, she wanted to research and ask doctors who specialized in autism what the best course of treatment would be. "I don't want to harm him by trying to help him," she said. I was grateful for that; our old pediatrician blindly wrote prescriptions, with some horrific consequences.
She called later and told me that after conferring with colleagues she thought the best course of action was to get me into see a developmental pediatrician at the Melmed Center.
The Melmed Center is one of the premiere autism treatment centers in the nation. When Nick was two and we were living in Tucson, I drove the two hours to get Nick his initial diagnosis from the Melmed Center. They are incredible at what they do, which means they are busy.
Their first available appointments are in November.
Our awesome pediatrician called them and was able to get us an appointment for Monday.
The doctor at the Melmed Center was in awe: "I see mothers with bruises all the time, but in my ten years here I've never seen anything like that before." Randomly throughout the appointment she would stop and say things like, "he did all of that?" Do I get a trophy for Most Astounding Bruises? Because that would rule.
A thorough two hour appointment, and the result was this: a prescription for risperidone.
Risperidone, a medicine long-used for other illnesses, was approved as a treatment for tantrums, aggression, or self-injurious behavior in children with autism in 2007. Our doctor at the Melmed Center was part of the trial conducted by SAARC that led to its approval as a treatment for autism, so she really knows her stuff when it comes to this drug. Research shows a 69% improvement in irritability and aggression. There are some side effects, but the main one--weight gain--is something Nick really, really needs, so it's actually a bonus.
Nick had his first dose today, and even with that first dose, he's changed. Calm. Happy. He's not zoned out, as I was afraid he would be, but rather he is alert and engaged. Not a single pinch since he took the first dose, and that after a morning where he was so agitated that I called to cancel his speech appointment because I didn't want him to maul his therapist. There's an almost eerie silence--I'm so used to screams that it seems wrong when I don't hear them.
Medicating Nick was not something I did lightly. It's taken me a long time to get this point. I did not do it for me--I did it for Nick's quality of life. His fears, and the aggression that stems from them, are limiting his happiness and what he can do in life. I want to see him be able to go to a camp for children with disabilities and not get kicked out the first day because the staff can't handle him. I want him to be able to go to the store and not be petrified of the loud burst of air-conditioned cool that hits him as soon at the automatic doors slide open. I want him to have a full life. I know it's not a panacea, and I know that research says behaviors return as soon as the child stops taking risperidone, but it will give him a chance to feel at peace right now, for the first time since toddlerhood.
I want to track the effectiveness of the medication, and I figured the best indicator would be my arms. So I'm going to take pictures of them every day so that I can see, literally, how effective the medicine is over time. Here's our baseline, Day 1:
 |
| Nick's Day 1 smile |
Monday, June 18, 2012
Summer, Summer, Summer, It's Like a Merry-Go-Round that Spins So Erratically You Get Motion Sick
I was sobbing at the boys' therapy clinic Thursday. Sobbing so much that I kept making these snorting sounds through my nose, noises that were so loud and silly-sounding that I wanted to laugh at my hysterical cry-style.
In high school I was taken with Longfellow's verses. I still remember sitting in my American Studies class in Nevada, feeling the spark of awe as we studied his poems. Such simplicity, yet such poignancy.
One of my favorites was "The Tide Rises, The Tide Falls." I felt the rhythm of the waves as I read the poem (but in a good way--not in the awful way you feel the waves in Crane's "The Open Boat" and eventually want to stab yourself in the eyes because you don't want to read another sentence about the painfully repetitive tide). Longfellow captures the ebb and flow that is life:
The tide rises, the tide falls,
The twilight darkens, the curlew calls;
Along the sea-sands damp and brown
The traveler hastens toward the town,
And the tide rises, the tide falls.
Darkness settles on roofs and walls,
But the sea, the sea in darkness calls;
The little waves, with their soft, white hands
Efface the footprints in the sands,
And the tide rises, the tide falls.
The morning breaks; the steeds in their stalls
Stamp and neigh, as the hostler calls;
The day returns, but nevermore
Returns the traveler to the shore.
And the tide rises, the tide falls.
When autism entered out scene, I was reminded of the Longfellow couplets that had captured my interest so many years ago. Early on in our autism journey I learned that it was all about ebb and flow. I will say my first teacher could have been a bit softer. I'd joined an autism group on MySpace (back when people actually used MySpace) and became a participant in the group's message board discussions. Nick had made some gains . . . and then regressed, and I was floundered by it. I posted a question about the regression on the message board, and one of the "old timers" of the group who had a 20-year-old daughter with autism laughed at me. She laughed because autism is gains and regressions, over and over again, and it was foolish of me to be surprised by that. With autism, the tide rises, the tide falls, but in the morning the waves have wiped away the evidence of the gain that had traveled into the child's life the day before.
That's how it's been with Nick. Awesome gains--you've read about those gains here. Shocking losses--I'm astounded by them when I read back through my blog posts and realize, "Wow, Nick used to be able to do that?!"
The tide rises, the tide falls.
The past six months have been met with tsunami-sized waves. Nick had AMAZING gains. Language bursting, full sentences galore. The the tidal wave receded back into the ocean, leaving a gaping emptiness on the shore. His words disappeared. His behaviors increased.
"Behaviors." That's the nice-sounding autism speak for the simply awful things kids with autism can do when they're upset. It's so neutral--I mean, "behavior" is the appropriate word for any action, good or bad--but in Autismworld it definitely refers to the bad.
So, the behaviors have been increasing. And Nick is seven now, getting bigger and stronger, so managing the behaviors is more difficult. I can't just pick him up like I used to and carry him away.
I've been writing a section of a chapter this week that focuses on Intense World Syndrome, which posits that since individuals with autism have hyperactive amygdalae, the emotions and fears they experience are extremely intensified. On a cognitive level I completely understand why Nick's behaviors are increasing. He's scared, really scared, of the new things the summer brings. He's emotional, intensely emotional. I understand.
But when someone you love leaves you black and blue, it's really hard to focus the neuroscience behind the behavior.
It's been a tough few weeks. For the most part I've sequestered Nick and myself to home because leaving the house leads to more behaviors. It's been a bit like sitting in a prison. I realized that I spent four days in a row last week without stepping out my door even a single time, not even to walk to the mailbox. Every second of those days spent in the house were work. How do I keep Nick happy? I'll bring out this toy. I'll blow these bubbles. I'll say, "Mommy tickle Nicholas" when he starts to lose it so that he perhaps forgets he is angry and begins to laugh. Hours on end of metaphorically dangling marionettes to keep him calm.
Of course, life comes up and you do have to leave the house. When days where I knew I'd have to take Nick out of the house with me approached, I couldn't sleep the night before because I was so stressed about how I would manage to keep him happy and avoid any meltdowns.
Nick had a lot of meltdowns last week, and by Wednesday they were getting more extreme. That afternoon I took Nick to his OT appointment, and as he worked in back with his therapist a couple of kids who were waiting for their appointments chatted with me, chatted with the owner of the clinic. Chatted. I was indignant at how unfair it was (irrational as that feeling was). Here were these kids with autism chatting with me. There's no way Nick could do that. He's not just different from other kids; he's different from other kids with autism. His autism is so severe that he's worlds away from being like other kids with autism.
I heard the scream from the therapy room. "That's loud!" one of the children complained.
"Yes," I said with a smile, "he can scream pretty loudly."
More screams and more screams and the therapist was bringing Nick back to the lobby. Or trying to. She was having a very difficult time maneuvering him as he screamed and flailed and grabbed. I helped her finally get him through the door and into the waiting room. Usually the children put their shoes on before leaving the therapy area, but there's no way she could have gotten him to do that on this day, so she and I sat on the floor with Nick, trying to get his shoes on as she gave me the rundown on the session.
As she told me about how they started with X, then did Y, then Nick got upset when she unexpectedly left the room to get an eraser, I struggled with Nick. I sat behind him, his back up against my stomach, and fought to get his socks on. He was screaming and fighting. I got one sock on, and he ripped it off. The therapist was still going through her debriefing and Nick escaped from me. He ran for the door to the therapy area and I bolted after him. He got the door open and was trying to get over to the therapy gym. I wrapped my arms around his torso and tried to pull him back. He's getting so heavy, so strong. I got him out of the therapy area but couldn't get the door closed with my foot because Nick had grabbed the handle with both hands and was gripping it as if his life depended on it. I unwrapped one arm from around his torso and lifted up one knee to support the weight of his bottom--he's getting too heavy now for me to hold him when he's tantruming with just one arm--and used my free hand to ply his fingers from the knob. I somehow got the door closed and then Nick was on the floor, lying on his back, screaming a deafening scream. I used to be able to just reach down, put my hands under his arms, and lift him up, but his legs are too long now and he can kick me away with them before my short arms can get to his armpits. I tried to get behind him, thinking I could lift his back up just enough that I could get my hands underneath his arms and pick him up. He flailed away and I had a handful of his shirt instead. I grabbed at him, being as careful as possible because I didn't want to hurt him. He dropped to the floor again, being the dead weight that my self-defense teacher told us we should be if someone ever tried to kidnap us. Man, was he right; I could not lift this seven-year-old.
That's when I realized that everyone was staring at us. Everyone. The parents. Their kids with autism. They were staring in horror at the freak show. Because Nick was horrifying even to autism parents. I felt my face flush in burning embarrassment as their eyes stabbed me.
I got Nick calm enough that I could get him back over to my bag and the waiting therapist. She picked up right where she'd left off, trying to get Nick to get his shoes on and trying to tell me about how the session went. Nick started to freak out again, and all I wanted to do was tell her to shut up and let us go because the screaming squirming child was about to explode again. I threw his shoes in my bag and picked up Nick. He pinched my biceps so hard that I wanted to scream, but I couldn't do much about it because if I wanted to remove the hands digging into my flesh I'd have to set him down again, which would just put me back where I started.
Somehow, I don't know how, we made it to the car, and I was drenched in sweaty exhaustion.
The next morning was a Thursday and Noah's camp (it was supposed to be Nick's too, but they cordially disinvited him after the first day) was going on a field trip he'd so been looking forward to. I couldn't keep him home. Unfortunate, because Thursdays are the dreadful day. They are the only day that Joe goes into the office so there's no kindly soul to watch Nick while I run out for ten minutes to take Noah to camp. I had to take Nick with me. There was no way around it.
I was smart and brought along the stroller. That would keep him calm and contained during the five minutes we'd need to spend in the lobby checking Noah in. I explained to him over and over again as we drove to the camp that he wasn't going to have to stay, that we were just dropping off Noah, that we'd go in for just a few minutes then be all done.
It didn't go so well. Nick flipped out. Screaming, flailing. It was a repeat of the day before. But this time . . .
He'd figured out that his legs were long enough that he could stand up while in the stroller.
It was hard to pick him up the previous day and get him to the car, but this day I was trying to pick up a tantruming kid stomping around with a stroller on his ass.
I got him out, with the help of the center director who was oh so glad that he wasn't in her program anymore. Because even though the camp was for children with disabilities, Nick's more autistic than the other autistic kids, just like the ones at OT, so they didn't know what to do with him.
I didn't know what to do with him. I knew that if we went home there would probably be another tantrum when it was time to get out of the car, and I knew that if we went somewhere else there would probably be another tantrum when he encountered a sight/sound/smell/taste that was unfamiliar. So we drove. For a hour. The motion of the car kept Nick soothed, allowing me to keep company with my anger for a rare bit. It wasn't fair. That doctor who'd evaluated him when he was three said he'd be okay, that he'd probably grow up to be a socially-awkward computer engineer, but that his prognosis was good. I'd been a great mom; I'd done everything, and more, to make that prognosis even better. I took him to every therapy under the sun. I had habilitators come to the house to work with him. I tried every diet, every supplement, every B-6 shot that specialists said would help him. I did everything, and here were the experts, clueless, asking me how to provide therapies for him because they didn't have a clue how to help him. I was angry with every one of them.
After an hour I decided say goodbye to my anger and take Nick home. He was so calmed by the drive; we'd made it past the behaviors.
Except when I pulled into the garage he had a meltdown because he didn't want to get out of the car. I won't describe it; just replay the OT and camp scenes and you've pretty much got it.
Noah had speech that afternoon. Nick wasn't going to make it through an hour of waiting in a lobby with me. I reached out to his dad, hoping, praying he would hang with Nick while I took Noah to his appointment. He was too busy. Joe was at the store, and I couldn't wait any longer for him to get back. I had to take Nick with us.
I pulled out all my best marionettes, and Nick was doing a fantastic job. Amazing. He was nothing like the child who'd been uncontrollable that morning. We sat in the back hallway of the clinic next to the cabinet where they store all the therapy toys and Nick pulled out a couple he wanted to play with. He was doing SO. WELL. I finally exhaled, something I hadn't done all day.
And then the son of the office manager opened up the clinic door and ran down the hallway, yelling to his mother, "Mom! Mom! I just saw so-and-so's car! They're going to our house we have to leave!" It was that naive sort of imploring that children claim because every little thing is the most important thing when you are young.
The emphatic child scared Nick and . . . meltdown.
He tried to run out of the clinic. I had to scoop the fighting child up so that he couldn't get out the door. He tried to run into the room where his brother's social group was meeting--I guess it seemed like a safe place because he'd had a great session there with his speech therapist on Monday. I closed the door that he'd partially opened and steered him toward the back hallway again. Since flight didn't work, his fight impulse kicked in.
Nick ran at the desperately strident child who had scared him and thrown his world into chaos. I fear to think what would have happened if I hadn't been there to unclench the one hand Nick had already started to dig into the noisy child's arm.
I picked him up and sprinted us into an empty therapy room, quickly closing the door behind us. I tried the one thing that always works, saying "Mommy tickle Nicholas," but he wasn't assuaged. Replay footage from OT and camp scenes. But it was OK; I'd take his painful pinches until he calmed because we were safe in a room where he couldn't hurt anyone else, where no one would stare at the horrifying show.
Ugh, but then I realized that he'd soiled himself. Oh no. I had to somehow get to my bag in the hallway and get Nick into the bathroom. But it would be OK, right?, because he always likes going into the clinic's bathroom since the sink is fun to play with.
It wasn't OK. He fought me like a caged animal. In sensory overload, the lights freaked him out and he turned them off. Feet kicked me and fingers pinched me in the pitch black. To have someone you love, so much, hurt you . . . there aren't words.
Eventually he let me turn the light back on and I got him cleaned up, but he didn't want me to redress him. He was fighting as if he feared the diaper in my hand.
It was the wrong brand.
I dug into my bag and found one that was the right brand and eventually he was dressed again. After ten long, scream-filled minutes in the bathroom, Nick was maybe, I hoped?, ready to go back into the hallway.
I showed him the toys he'd chosen earlier, trying to re-spark his interest, and when it seemed like he was on the verge of another meltdown I pulled some bubbles out of my magical mommy bag and blew them. Every time his face started to turn red like he was on the verge of exploding, I blew the bubbles to distract him from what was boiling inside him. Eventually he calmed.
That's when I started to cry. Sob. Whatever. Once it started I couldn't stop it; it just kept going and going. At first it was a silent cry, but then eventually there were the sounds. I was so embarrassed, humiliated, to think of the parents sitting in the waiting room at the front of the clinic hearing my sobs filter down the hall. Yet I couldn't stop it. I cried, and I texted Joe to see if he could come take Nick for me. The very, very sweet receptionist, a girl who reminds me of the person I used to be when I was young, came to my side. She asked if I was okay, and not knowing how to put into words the heartbreak of having a son who is so traumatized by the world that he hurts you incessantly, I choked out, "It's just a really bad day." She put her arm around me, which just made me cry more even though it was exactly what my embarrassment didn't want me to do. She gave me tissues and brought me water until Joe came to rescue me.
That night I couldn't sleep; my brain was still too active from the day's events. I got up to watch TV in hopes of distracting my mind into sleep. As I poured myself a glass of water, I felt a strong sense of . . . relief. We'd made it. It was an awful day, but we'd made it. We'd gotten through. We were going to be okay.
We are going to be okay. Tomorrow we'll go to see a new specialist and we'll see where this road takes us. For now we have the gently quiet beach, and if it is for but a moment before the next wave comes--which it will--we have it.
In high school I was taken with Longfellow's verses. I still remember sitting in my American Studies class in Nevada, feeling the spark of awe as we studied his poems. Such simplicity, yet such poignancy.
One of my favorites was "The Tide Rises, The Tide Falls." I felt the rhythm of the waves as I read the poem (but in a good way--not in the awful way you feel the waves in Crane's "The Open Boat" and eventually want to stab yourself in the eyes because you don't want to read another sentence about the painfully repetitive tide). Longfellow captures the ebb and flow that is life:
The tide rises, the tide falls,
The twilight darkens, the curlew calls;
Along the sea-sands damp and brown
The traveler hastens toward the town,
And the tide rises, the tide falls.
Darkness settles on roofs and walls,
But the sea, the sea in darkness calls;
The little waves, with their soft, white hands
Efface the footprints in the sands,
And the tide rises, the tide falls.
The morning breaks; the steeds in their stalls
Stamp and neigh, as the hostler calls;
The day returns, but nevermore
Returns the traveler to the shore.
And the tide rises, the tide falls.
When autism entered out scene, I was reminded of the Longfellow couplets that had captured my interest so many years ago. Early on in our autism journey I learned that it was all about ebb and flow. I will say my first teacher could have been a bit softer. I'd joined an autism group on MySpace (back when people actually used MySpace) and became a participant in the group's message board discussions. Nick had made some gains . . . and then regressed, and I was floundered by it. I posted a question about the regression on the message board, and one of the "old timers" of the group who had a 20-year-old daughter with autism laughed at me. She laughed because autism is gains and regressions, over and over again, and it was foolish of me to be surprised by that. With autism, the tide rises, the tide falls, but in the morning the waves have wiped away the evidence of the gain that had traveled into the child's life the day before.
That's how it's been with Nick. Awesome gains--you've read about those gains here. Shocking losses--I'm astounded by them when I read back through my blog posts and realize, "Wow, Nick used to be able to do that?!"
The tide rises, the tide falls.
The past six months have been met with tsunami-sized waves. Nick had AMAZING gains. Language bursting, full sentences galore. The the tidal wave receded back into the ocean, leaving a gaping emptiness on the shore. His words disappeared. His behaviors increased.
"Behaviors." That's the nice-sounding autism speak for the simply awful things kids with autism can do when they're upset. It's so neutral--I mean, "behavior" is the appropriate word for any action, good or bad--but in Autismworld it definitely refers to the bad.
So, the behaviors have been increasing. And Nick is seven now, getting bigger and stronger, so managing the behaviors is more difficult. I can't just pick him up like I used to and carry him away.
I've been writing a section of a chapter this week that focuses on Intense World Syndrome, which posits that since individuals with autism have hyperactive amygdalae, the emotions and fears they experience are extremely intensified. On a cognitive level I completely understand why Nick's behaviors are increasing. He's scared, really scared, of the new things the summer brings. He's emotional, intensely emotional. I understand.
But when someone you love leaves you black and blue, it's really hard to focus the neuroscience behind the behavior.
It's been a tough few weeks. For the most part I've sequestered Nick and myself to home because leaving the house leads to more behaviors. It's been a bit like sitting in a prison. I realized that I spent four days in a row last week without stepping out my door even a single time, not even to walk to the mailbox. Every second of those days spent in the house were work. How do I keep Nick happy? I'll bring out this toy. I'll blow these bubbles. I'll say, "Mommy tickle Nicholas" when he starts to lose it so that he perhaps forgets he is angry and begins to laugh. Hours on end of metaphorically dangling marionettes to keep him calm.
Of course, life comes up and you do have to leave the house. When days where I knew I'd have to take Nick out of the house with me approached, I couldn't sleep the night before because I was so stressed about how I would manage to keep him happy and avoid any meltdowns.
Nick had a lot of meltdowns last week, and by Wednesday they were getting more extreme. That afternoon I took Nick to his OT appointment, and as he worked in back with his therapist a couple of kids who were waiting for their appointments chatted with me, chatted with the owner of the clinic. Chatted. I was indignant at how unfair it was (irrational as that feeling was). Here were these kids with autism chatting with me. There's no way Nick could do that. He's not just different from other kids; he's different from other kids with autism. His autism is so severe that he's worlds away from being like other kids with autism.
I heard the scream from the therapy room. "That's loud!" one of the children complained.
"Yes," I said with a smile, "he can scream pretty loudly."
More screams and more screams and the therapist was bringing Nick back to the lobby. Or trying to. She was having a very difficult time maneuvering him as he screamed and flailed and grabbed. I helped her finally get him through the door and into the waiting room. Usually the children put their shoes on before leaving the therapy area, but there's no way she could have gotten him to do that on this day, so she and I sat on the floor with Nick, trying to get his shoes on as she gave me the rundown on the session.
As she told me about how they started with X, then did Y, then Nick got upset when she unexpectedly left the room to get an eraser, I struggled with Nick. I sat behind him, his back up against my stomach, and fought to get his socks on. He was screaming and fighting. I got one sock on, and he ripped it off. The therapist was still going through her debriefing and Nick escaped from me. He ran for the door to the therapy area and I bolted after him. He got the door open and was trying to get over to the therapy gym. I wrapped my arms around his torso and tried to pull him back. He's getting so heavy, so strong. I got him out of the therapy area but couldn't get the door closed with my foot because Nick had grabbed the handle with both hands and was gripping it as if his life depended on it. I unwrapped one arm from around his torso and lifted up one knee to support the weight of his bottom--he's getting too heavy now for me to hold him when he's tantruming with just one arm--and used my free hand to ply his fingers from the knob. I somehow got the door closed and then Nick was on the floor, lying on his back, screaming a deafening scream. I used to be able to just reach down, put my hands under his arms, and lift him up, but his legs are too long now and he can kick me away with them before my short arms can get to his armpits. I tried to get behind him, thinking I could lift his back up just enough that I could get my hands underneath his arms and pick him up. He flailed away and I had a handful of his shirt instead. I grabbed at him, being as careful as possible because I didn't want to hurt him. He dropped to the floor again, being the dead weight that my self-defense teacher told us we should be if someone ever tried to kidnap us. Man, was he right; I could not lift this seven-year-old.
That's when I realized that everyone was staring at us. Everyone. The parents. Their kids with autism. They were staring in horror at the freak show. Because Nick was horrifying even to autism parents. I felt my face flush in burning embarrassment as their eyes stabbed me.
I got Nick calm enough that I could get him back over to my bag and the waiting therapist. She picked up right where she'd left off, trying to get Nick to get his shoes on and trying to tell me about how the session went. Nick started to freak out again, and all I wanted to do was tell her to shut up and let us go because the screaming squirming child was about to explode again. I threw his shoes in my bag and picked up Nick. He pinched my biceps so hard that I wanted to scream, but I couldn't do much about it because if I wanted to remove the hands digging into my flesh I'd have to set him down again, which would just put me back where I started.
Somehow, I don't know how, we made it to the car, and I was drenched in sweaty exhaustion.
The next morning was a Thursday and Noah's camp (it was supposed to be Nick's too, but they cordially disinvited him after the first day) was going on a field trip he'd so been looking forward to. I couldn't keep him home. Unfortunate, because Thursdays are the dreadful day. They are the only day that Joe goes into the office so there's no kindly soul to watch Nick while I run out for ten minutes to take Noah to camp. I had to take Nick with me. There was no way around it.
I was smart and brought along the stroller. That would keep him calm and contained during the five minutes we'd need to spend in the lobby checking Noah in. I explained to him over and over again as we drove to the camp that he wasn't going to have to stay, that we were just dropping off Noah, that we'd go in for just a few minutes then be all done.
It didn't go so well. Nick flipped out. Screaming, flailing. It was a repeat of the day before. But this time . . .
He'd figured out that his legs were long enough that he could stand up while in the stroller.
It was hard to pick him up the previous day and get him to the car, but this day I was trying to pick up a tantruming kid stomping around with a stroller on his ass.
I got him out, with the help of the center director who was oh so glad that he wasn't in her program anymore. Because even though the camp was for children with disabilities, Nick's more autistic than the other autistic kids, just like the ones at OT, so they didn't know what to do with him.
I didn't know what to do with him. I knew that if we went home there would probably be another tantrum when it was time to get out of the car, and I knew that if we went somewhere else there would probably be another tantrum when he encountered a sight/sound/smell/taste that was unfamiliar. So we drove. For a hour. The motion of the car kept Nick soothed, allowing me to keep company with my anger for a rare bit. It wasn't fair. That doctor who'd evaluated him when he was three said he'd be okay, that he'd probably grow up to be a socially-awkward computer engineer, but that his prognosis was good. I'd been a great mom; I'd done everything, and more, to make that prognosis even better. I took him to every therapy under the sun. I had habilitators come to the house to work with him. I tried every diet, every supplement, every B-6 shot that specialists said would help him. I did everything, and here were the experts, clueless, asking me how to provide therapies for him because they didn't have a clue how to help him. I was angry with every one of them.
After an hour I decided say goodbye to my anger and take Nick home. He was so calmed by the drive; we'd made it past the behaviors.
Except when I pulled into the garage he had a meltdown because he didn't want to get out of the car. I won't describe it; just replay the OT and camp scenes and you've pretty much got it.
Noah had speech that afternoon. Nick wasn't going to make it through an hour of waiting in a lobby with me. I reached out to his dad, hoping, praying he would hang with Nick while I took Noah to his appointment. He was too busy. Joe was at the store, and I couldn't wait any longer for him to get back. I had to take Nick with us.
I pulled out all my best marionettes, and Nick was doing a fantastic job. Amazing. He was nothing like the child who'd been uncontrollable that morning. We sat in the back hallway of the clinic next to the cabinet where they store all the therapy toys and Nick pulled out a couple he wanted to play with. He was doing SO. WELL. I finally exhaled, something I hadn't done all day.
And then the son of the office manager opened up the clinic door and ran down the hallway, yelling to his mother, "Mom! Mom! I just saw so-and-so's car! They're going to our house we have to leave!" It was that naive sort of imploring that children claim because every little thing is the most important thing when you are young.
The emphatic child scared Nick and . . . meltdown.
He tried to run out of the clinic. I had to scoop the fighting child up so that he couldn't get out the door. He tried to run into the room where his brother's social group was meeting--I guess it seemed like a safe place because he'd had a great session there with his speech therapist on Monday. I closed the door that he'd partially opened and steered him toward the back hallway again. Since flight didn't work, his fight impulse kicked in.
Nick ran at the desperately strident child who had scared him and thrown his world into chaos. I fear to think what would have happened if I hadn't been there to unclench the one hand Nick had already started to dig into the noisy child's arm.
I picked him up and sprinted us into an empty therapy room, quickly closing the door behind us. I tried the one thing that always works, saying "Mommy tickle Nicholas," but he wasn't assuaged. Replay footage from OT and camp scenes. But it was OK; I'd take his painful pinches until he calmed because we were safe in a room where he couldn't hurt anyone else, where no one would stare at the horrifying show.
Ugh, but then I realized that he'd soiled himself. Oh no. I had to somehow get to my bag in the hallway and get Nick into the bathroom. But it would be OK, right?, because he always likes going into the clinic's bathroom since the sink is fun to play with.
It wasn't OK. He fought me like a caged animal. In sensory overload, the lights freaked him out and he turned them off. Feet kicked me and fingers pinched me in the pitch black. To have someone you love, so much, hurt you . . . there aren't words.
Eventually he let me turn the light back on and I got him cleaned up, but he didn't want me to redress him. He was fighting as if he feared the diaper in my hand.
It was the wrong brand.
I dug into my bag and found one that was the right brand and eventually he was dressed again. After ten long, scream-filled minutes in the bathroom, Nick was maybe, I hoped?, ready to go back into the hallway.
I showed him the toys he'd chosen earlier, trying to re-spark his interest, and when it seemed like he was on the verge of another meltdown I pulled some bubbles out of my magical mommy bag and blew them. Every time his face started to turn red like he was on the verge of exploding, I blew the bubbles to distract him from what was boiling inside him. Eventually he calmed.
 |
| My arm, post-speech clinic |
That night I couldn't sleep; my brain was still too active from the day's events. I got up to watch TV in hopes of distracting my mind into sleep. As I poured myself a glass of water, I felt a strong sense of . . . relief. We'd made it. It was an awful day, but we'd made it. We'd gotten through. We were going to be okay.
We are going to be okay. Tomorrow we'll go to see a new specialist and we'll see where this road takes us. For now we have the gently quiet beach, and if it is for but a moment before the next wave comes--which it will--we have it.
Thursday, February 23, 2012
Seven
Today my baby is seven.
The number is hard one.
Developmentally, Beh is two. When people ask me how old he is, my impulse is to say "two." Because it feels like he made it to two just fine but that when he made it there time started slowing down, turning days into years. He's growing and learning, but it's in slower motion.
For the most part, people didn't realize that he was all that different from other two-year-olds. He was small enough that my four, five, six-year-old two-year-old blended in with the other kids his age.
But seven--it's such a big number.
When kids hit seven, they aren't so interested in watching Sprout, playing with Thomas trains, and singing the ABCs. When kids hit seven, they start to drift off with their friends, mom watching from a distance instead of hovering.
When kids hit seven, kids who don't act like other seven-year-olds are labeled as "different."
I saw it with Noah. When he hit seven, all of the sudden other kids started to realize that he wasn't like them. That innocent ignorance of difference began to fade, replaced by the knowledge that one of these kids was not like the others.
Nick is seven. His life is about to change.
Wednesday, December 28, 2011
Treasure Days
I know that these are common moments for most parents, but they are the ones that leave me in awe.
Beh has been so happy all winter break. Indescribably so. It's like he's beaming rays of joy. Laughing, singing all day. Even yesterday when I had to take him with me to pick up my new glasses, he was happy. I'd really hoped that I wouldn't have to have him with me, but alas there was no such respite. To be honest, I got tears in my eyes when I realized that I'd have to bring him with me because I feared the worst. On outings like this I find myself chanting a prayer in my head over and over as I drive along, "Please stay calm, please stay calm, please stay calm." New places are often traumatic for Beh, and I never know how he's going to react.
He reacted, well, just like any other six-year-old. He didn't have a meltdown; he just got a little squirrelly after a few minutes.
It's not only that he's been happy; he's also been understanding me when I talk to him. I ask him to get his shoes and put them on . . . and he does. Last night I asked him to finish the game he was playing on my iphone so he could go to bed . . . and he finished the last two moves then stood up and walked to his room, then crawled under his blankets.
In stunned amazement, I kept turning to Joe for the next hour and saying, "Did you see that? He went right to bed!"
It's such a simple thing to have a child go to bed when you ask him to, something that I'm sure a lot of parents take for granted. But for Beh, this is giant. Giant.
And just now I walked into his room . . . to find him making his bed.
This is Nick's winter break pattern--he thrives during these downtimes. Two years ago it was during winter break that he figured out how to use words. I know that school will start again next week and that Beh will be mentally taxed. He'll be in a state of sensory overload by the time he gets home and won't be able to process all that I say to him. I know that the joy exuding from him now will be replaced by exhaustion.
So I'm treasuring up in my heart all of these moments of awe. And trying to stop myself from scooping him up in big hugs every five minutes and telling him how grateful I am for these moments (boys don't want moms to interrupt their play that much, after all).
Monday, November 14, 2011
The Other Brother
I've always been the little sister. I've never had a younger sibling to deal with, especially not one with a developmental delay, so I can't fully understand exactly how Noah feels as Nick's big brother.
Not only does Noah have his own milder autism (and all the struggles that come with that) to manage, he also has his brother's autism to manage. He doesn't get the brother he always wanted who would play video games with him and share a room with him. What he does get is extra responsibility. I try to limit it, I do. But sometimes, when you're in line at Papa Murphy's and Nick melts down, you just gotta give Noah $20 and ask him to get the pizza. When it's a choice between not letting Noah get the pizza he really, really wants and asking him to be in charge of paying for it, I choose the pizza because I don't want Noah to lose out on anything because of his brother.
That's my goal--I want to do all I can to make sure Noah doesn't miss out on anything because of his brother.
Sometimes, though, there is nothing I can do.
One of the habilitation therapists who was working with Noah quit on him, three hours before her next scheduled shift, because she was afraid of Nick.
I'll let you take a moment to process that. A therapist whose job it is to work with kids with autism was afraid to work with one of my autistic children because the other had her scared.
The whole idea that Nick is someone to be afraid of pisses me off to no end, so let's not even address that for now. That's way too much Momma Bear for one blog post.
Think about what it was like for Noah. He spent all this time building a relationship with someone . . . and then she disappeared. Without warning, which sucks for a kid with autism who craves consistency. Without so much as an explanation or a goodbye, which sucks for, well, any kid who has someone they care about leave their life.
Yesterday he was asking for her because it was a day when she'd normally come to work with him. What do you say to spare a child's heart? Not the truth. Because he'd either resent his brother, or the therapist who bailed on him with not so much as goodbye . . . or both.
It's a no win.
I wish I could put a bubble around my boys to protect them from the world's misunderstanding of autism. In that bubble, no one would ever look at Nick like he was a monster, no one would bail on Noah or Nick and disrupt their consistency and routine. There's no such bubble, though, so all I can do is protect them as much as I can and buffer the blows when they come.
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