Medicine Matters (10)
The Chemistry of Puberty
3/18/14
As any parent of a pre-teen, the early stages of puberty are a bumpy ride to say the least. For us, these days are far more.
We’ve had such a good ride these last couple years, since Jake has stabilized in a new school placement, I don’t want anything to change! My heart aches at the thought of the suffering Jake is going through as he changes from “big boy Jake” into “young man Jake”.
He’s growing quickly and he knows it, but other things are changing too. While we’re so excited about his conversation and height, I’m a little scared about the awareness. And so is he.
At our last psychiatrist appointment (med check) the doctor was thrilled with his progress and demeanor. He was sitting in the chair carrying a calm and rational conversation with the doctor.
A smile drew across the doctor’s face as Jake carefully described how he can’t pay attention any more, he’s more distracted by other kids, he has a hard time following directions and accepting feedback.
I was so proud of Jake, he was right on in his description of what’s been happening at school and at home, but knew he was suffering inside. Up until now, our doctor has been able to adjust his chemistry to meet Jake’s needs, but sorry folks there’s no stopping puberty.
Jake ended his description with, “Dr. S can you give me another pill to make this stuff get easier?”
Dr. S, still smiling proclaimed, “No I cannot Jake. These are all great things! You are just growing up. You are becoming more aware of your surroundings, noticing more things that bug you and forming new opinions. I don’t want to change any of that.”
Jake looked at me and I could see his bottom lip quivering from across the room. His voice was raised now in his efforts to get new medicine and he was visibly upset. I tried to remind him that there’s not a pill to help everything and what he’s going through is totally normal. “You are turning in to a man bud, and these are great things that happen.”
He then started to cry. The alligator tears fell down his cheeks in quick succession, down to his jacket, rolling over his chest. My heart was breaking and so was the doctor’s.
“Tell you what Jake, I have one last thing to try, let me get it,” said the doctor.
He went into the closet and pulled out some samples for me. Samples of the exact pills he is already on, but once Jake saw the pill bottles change hands and land in my purse, the tears shut off. Just like a faucet.
“Will those pills help me stay calm and keep more focused? Thank you Dr. S.!” Jake exclaimed excitedly.
“We will see Jake, we are only trying them.”
I left the office with my emotions going through a cement mixer in the pit of my stomach. I could have likely behavior managed the pill situation if we left empty-handed, not that I wanted to, but I could have.
Did we just do the wrong thing by stopping Jake’s little fit and giving him the “new pills”?
He swings so quickly from emotion to emotion it’s easy to manipulate his mood, however we never know what’s coming next.
We talked about the pills in the car, vaguely because I don’t want to lie. I told him they were the same script he already had, but maybe a little “fresher”. After two days of taking the new pills, he reports no new changes and has forgotten.
------
There are two other things I have noticed and wanted to share briefly.
We started giving Jake GABA about two years ago, maybe three. At the time we started, I noticed a big burst in language and new connections in conversation. He started putting stuff together that never dawned on him before. It could be maturity or stabilization at the time, but that would be a big coincidence.
Anyway, after recently researching the role of GABA in the brain and body, I added half a GABA dose in the afternoons too. Amazing. I noticed more focus, attention and determination. He noticed “calmer and smarter”. I’ll take both.
Also, falling asleep and “finding his dream” is getting harder and harder. He says his brain just wants to keep working and working. We’ve been off and on with Melatonin but discovered “sleepytime” tea. He drinks a little before bed, it’s warm and we put in lemon and he’s off to dreamland much easier.
3/18/14
As any parent of a pre-teen, the early stages of puberty are a bumpy ride to say the least. For us, these days are far more.
We’ve had such a good ride these last couple years, since Jake has stabilized in a new school placement, I don’t want anything to change! My heart aches at the thought of the suffering Jake is going through as he changes from “big boy Jake” into “young man Jake”.
He’s growing quickly and he knows it, but other things are changing too. While we’re so excited about his conversation and height, I’m a little scared about the awareness. And so is he.
At our last psychiatrist appointment (med check) the doctor was thrilled with his progress and demeanor. He was sitting in the chair carrying a calm and rational conversation with the doctor.
A smile drew across the doctor’s face as Jake carefully described how he can’t pay attention any more, he’s more distracted by other kids, he has a hard time following directions and accepting feedback.
I was so proud of Jake, he was right on in his description of what’s been happening at school and at home, but knew he was suffering inside. Up until now, our doctor has been able to adjust his chemistry to meet Jake’s needs, but sorry folks there’s no stopping puberty.
Jake ended his description with, “Dr. S can you give me another pill to make this stuff get easier?”
Dr. S, still smiling proclaimed, “No I cannot Jake. These are all great things! You are just growing up. You are becoming more aware of your surroundings, noticing more things that bug you and forming new opinions. I don’t want to change any of that.”
Jake looked at me and I could see his bottom lip quivering from across the room. His voice was raised now in his efforts to get new medicine and he was visibly upset. I tried to remind him that there’s not a pill to help everything and what he’s going through is totally normal. “You are turning in to a man bud, and these are great things that happen.”
He then started to cry. The alligator tears fell down his cheeks in quick succession, down to his jacket, rolling over his chest. My heart was breaking and so was the doctor’s.
“Tell you what Jake, I have one last thing to try, let me get it,” said the doctor.
He went into the closet and pulled out some samples for me. Samples of the exact pills he is already on, but once Jake saw the pill bottles change hands and land in my purse, the tears shut off. Just like a faucet.
“Will those pills help me stay calm and keep more focused? Thank you Dr. S.!” Jake exclaimed excitedly.
“We will see Jake, we are only trying them.”
I left the office with my emotions going through a cement mixer in the pit of my stomach. I could have likely behavior managed the pill situation if we left empty-handed, not that I wanted to, but I could have.
Did we just do the wrong thing by stopping Jake’s little fit and giving him the “new pills”?
He swings so quickly from emotion to emotion it’s easy to manipulate his mood, however we never know what’s coming next.
We talked about the pills in the car, vaguely because I don’t want to lie. I told him they were the same script he already had, but maybe a little “fresher”. After two days of taking the new pills, he reports no new changes and has forgotten.
------
There are two other things I have noticed and wanted to share briefly.
We started giving Jake GABA about two years ago, maybe three. At the time we started, I noticed a big burst in language and new connections in conversation. He started putting stuff together that never dawned on him before. It could be maturity or stabilization at the time, but that would be a big coincidence.
Anyway, after recently researching the role of GABA in the brain and body, I added half a GABA dose in the afternoons too. Amazing. I noticed more focus, attention and determination. He noticed “calmer and smarter”. I’ll take both.
Also, falling asleep and “finding his dream” is getting harder and harder. He says his brain just wants to keep working and working. We’ve been off and on with Melatonin but discovered “sleepytime” tea. He drinks a little before bed, it’s warm and we put in lemon and he’s off to dreamland much easier.
No More Pills
1/31/14
We’re at a crossroads.
I’ve always told Jake and we all fully believe that there are as many or more blessings in autism as there are challenges. We choose to focus on the positives and live a life of high reinforcement.
To that end, Jake is really starting to realize the scope of his abilities and the things he just cannot do. While playing Minecraft connects him to new neighborhood friends, he’s realizing he cannot keep up reading the words on the screen or typing messages back. Frustration is near the surface.
He understands his brain works very fast and has always accepted that as the primary cause for his struggles. He’s felt special because of his super powers and that’s exactly how we want it. We never want him to think his Autism is bad. This week at the psychiatrist for a med check, no pill could help my heart break.
When he realized that we were staying the course with his meds, Jake’s eyes started brimming up with tears. No little papers were handed to mommy. The doctor was smiling, pleased and reinforced Jake for his great calm behavior. For months and months, he always viewed this doctor as the man who can help him with any problem he has. There are pills for pain, pills for aggression, pills for attention and pills for anxiety. But this week there were no more pills.
He started begging the doctor for a new drug to make reading easier. With the hiring of a new tutor, Jake is realizing that we’re going back to basics with reading skills and I think that makes him sad. He has such a struggle ahead of him.
We left a completely satisfied doctor empty-handed and full of stress. While I was paying, I joked with the other doctor and the receptionist if he had a pill to make Jake smart? They all commented that if they had THAT pill we’d all be overdosing. We laughed, made more comments, I turned around the Jake was gone.
He was so upset he actually eloped. (He hasn’t done that since 2nd grade)
My eyes darted up and down the long halls, to the chairs for his jacket and iPad, to the little kitchen area and no Jake. While the woman was swiping my card, I ran out the door.
Look left, nothing but closing elevator doors.
If he's in the elevator he could go anywhere! My heart was beating in my throat.
Look right, a very sad Jake had stuck himself into the corner facing the wall. He turned around with giant tears on his cheeks. My heart broke into a million pieces.
“I just want to have a super smart brain that works,” he said sniffling.
“Oh honey, we all do, but all our brains are different… Daddy’s brain takes pictures, my brain makes music and your brain takes pictures too. I cannot take pictures like you and daddy, nor can you or daddy play my flutes and piano. We are all different and have a different purpose on Earth.”
It fell out of my mouth as if I God was placing the words on my tongue one by one. Low, deep, slow and calm voices… as I spoke I watched the stress leave his face and shoulders.
Quick reflection to recognize I was aware that God was helping me with this conversation. My answers were crucial to Jake’s confidence and development.
“Can we go now?”
“Yes, let’s go… can we go to the deli for breakfast?” he asked.
“Absolutely, kiss your brain. My brain and stomach both love that idea! Let’s rock.”
So now another delicate dance begins. Convince Jake to focus on what he CAN DO instead of what he cannot. He needs to believe his brain is as beautiful as we think it is! This is no easy task as standardized testing is beginning at school, he’s slowly submerging himself into the NT society and we’re entering puberty head on.
It never ends friends, for any of us… so let’s control what we can. How we view our gifts and children makes lasting and life-long memories. Don’t ever let them see you doubt their abilities. Praise even the smallest tasks and embrace this newest challenge: another level of acceptance for all of us.
1/31/14
We’re at a crossroads.
I’ve always told Jake and we all fully believe that there are as many or more blessings in autism as there are challenges. We choose to focus on the positives and live a life of high reinforcement.
To that end, Jake is really starting to realize the scope of his abilities and the things he just cannot do. While playing Minecraft connects him to new neighborhood friends, he’s realizing he cannot keep up reading the words on the screen or typing messages back. Frustration is near the surface.
He understands his brain works very fast and has always accepted that as the primary cause for his struggles. He’s felt special because of his super powers and that’s exactly how we want it. We never want him to think his Autism is bad. This week at the psychiatrist for a med check, no pill could help my heart break.
When he realized that we were staying the course with his meds, Jake’s eyes started brimming up with tears. No little papers were handed to mommy. The doctor was smiling, pleased and reinforced Jake for his great calm behavior. For months and months, he always viewed this doctor as the man who can help him with any problem he has. There are pills for pain, pills for aggression, pills for attention and pills for anxiety. But this week there were no more pills.
He started begging the doctor for a new drug to make reading easier. With the hiring of a new tutor, Jake is realizing that we’re going back to basics with reading skills and I think that makes him sad. He has such a struggle ahead of him.
We left a completely satisfied doctor empty-handed and full of stress. While I was paying, I joked with the other doctor and the receptionist if he had a pill to make Jake smart? They all commented that if they had THAT pill we’d all be overdosing. We laughed, made more comments, I turned around the Jake was gone.
He was so upset he actually eloped. (He hasn’t done that since 2nd grade)
My eyes darted up and down the long halls, to the chairs for his jacket and iPad, to the little kitchen area and no Jake. While the woman was swiping my card, I ran out the door.
Look left, nothing but closing elevator doors.
If he's in the elevator he could go anywhere! My heart was beating in my throat.
Look right, a very sad Jake had stuck himself into the corner facing the wall. He turned around with giant tears on his cheeks. My heart broke into a million pieces.
“I just want to have a super smart brain that works,” he said sniffling.
“Oh honey, we all do, but all our brains are different… Daddy’s brain takes pictures, my brain makes music and your brain takes pictures too. I cannot take pictures like you and daddy, nor can you or daddy play my flutes and piano. We are all different and have a different purpose on Earth.”
It fell out of my mouth as if I God was placing the words on my tongue one by one. Low, deep, slow and calm voices… as I spoke I watched the stress leave his face and shoulders.
Quick reflection to recognize I was aware that God was helping me with this conversation. My answers were crucial to Jake’s confidence and development.
“Can we go now?”
“Yes, let’s go… can we go to the deli for breakfast?” he asked.
“Absolutely, kiss your brain. My brain and stomach both love that idea! Let’s rock.”
So now another delicate dance begins. Convince Jake to focus on what he CAN DO instead of what he cannot. He needs to believe his brain is as beautiful as we think it is! This is no easy task as standardized testing is beginning at school, he’s slowly submerging himself into the NT society and we’re entering puberty head on.
It never ends friends, for any of us… so let’s control what we can. How we view our gifts and children makes lasting and life-long memories. Don’t ever let them see you doubt their abilities. Praise even the smallest tasks and embrace this newest challenge: another level of acceptance for all of us.
Medicinal Mania
Dec. 29, 2012
We are starting off the New Year with an experimental bang and tension headache. Following a sufficiently stimulating Christmas at Great Wolf Lodge, we're going to throw some new meds into the mix. Yes, I've been called a glutton for punishment before, but puberty is knocking and Jake added 3 inches and many pounds to his frame last year, causing him to outgrown our medicinal management plan.
Our final decision to take the experimental leap to yet another medicine came after many meetings with "Team Jake"; his behaviorist, psychologist, psychiatrist, tutor, pediatrician, staff of 12 professionals at school and family mentors. It is neither a decision to be taken lightly nor one to be made alone.
Jake's last IEP meeting had a familiar and resounding theme. "If we could just keep his attention... He'd be doing much better." Lately I've been timing his attention during homework time at the kitchen table and he can focus about 4-6 seconds before he asks to use a “strategy” (break, sensory, gum, brushing, pressure)
We've gone from doing 3 homework sheets in one sitting to doing just a few problems on a page then riding the bike or hitting the punching bag to calm his body again. The torment that grips his brain must be so confusing. He uses all his might just to sit still. It's actually getting painful for me to watch as he struggles to stop his racing brain.
His body turns and twists, rocks side-to-side, eyes dart from the window to the clock to me then back to his paper. He tries to focus on a problem, stops midway, erases, and then starts again, twists, looks at the dog, the clock, his jacket, then back to the rest of his work.
So the decision is now: which medicine will do the calming trick? Since he already takes 3 meds and 2 supplements in the morning we've been hesitant to add anymore until absolutely necessary. Well, it's absolutely necessary.
Big sigh.
Admittedly, the medicine route can be a slippery slope but it can also allow your child to grow and learn. If a doctor told you to take a pill to help with anxiety, depression, the flu or insomnia, you'd be the next in line at the pharmacy. Don't deny your child every opportunity that chemicals can offer.
So if you're struggling with a decision whether to start/increase meds, please take yourself out of the equation. Wouldn't you do whatever possible to help your child gain independence, strength, confidence and focus?
I struggle everyday about how the chemicals he already ingests with his morning oats are effecting his organs, but what's the alternative? I refuse to watch my child suffer when there's a known and proven medicine out there that can help him. I cannot stand by and watch him chew the ends of his fingers off from anxiety just because I don't like the idea of him taking pills. If we don't control his mood swings and lack of impulse control so prevalent among Super Heroes, academic progress stops and behavior management takes over 24/7. Make the choice.
Dec. 29, 2012
We are starting off the New Year with an experimental bang and tension headache. Following a sufficiently stimulating Christmas at Great Wolf Lodge, we're going to throw some new meds into the mix. Yes, I've been called a glutton for punishment before, but puberty is knocking and Jake added 3 inches and many pounds to his frame last year, causing him to outgrown our medicinal management plan.
Our final decision to take the experimental leap to yet another medicine came after many meetings with "Team Jake"; his behaviorist, psychologist, psychiatrist, tutor, pediatrician, staff of 12 professionals at school and family mentors. It is neither a decision to be taken lightly nor one to be made alone.
Jake's last IEP meeting had a familiar and resounding theme. "If we could just keep his attention... He'd be doing much better." Lately I've been timing his attention during homework time at the kitchen table and he can focus about 4-6 seconds before he asks to use a “strategy” (break, sensory, gum, brushing, pressure)
We've gone from doing 3 homework sheets in one sitting to doing just a few problems on a page then riding the bike or hitting the punching bag to calm his body again. The torment that grips his brain must be so confusing. He uses all his might just to sit still. It's actually getting painful for me to watch as he struggles to stop his racing brain.
His body turns and twists, rocks side-to-side, eyes dart from the window to the clock to me then back to his paper. He tries to focus on a problem, stops midway, erases, and then starts again, twists, looks at the dog, the clock, his jacket, then back to the rest of his work.
So the decision is now: which medicine will do the calming trick? Since he already takes 3 meds and 2 supplements in the morning we've been hesitant to add anymore until absolutely necessary. Well, it's absolutely necessary.
Big sigh.
Admittedly, the medicine route can be a slippery slope but it can also allow your child to grow and learn. If a doctor told you to take a pill to help with anxiety, depression, the flu or insomnia, you'd be the next in line at the pharmacy. Don't deny your child every opportunity that chemicals can offer.
So if you're struggling with a decision whether to start/increase meds, please take yourself out of the equation. Wouldn't you do whatever possible to help your child gain independence, strength, confidence and focus?
I struggle everyday about how the chemicals he already ingests with his morning oats are effecting his organs, but what's the alternative? I refuse to watch my child suffer when there's a known and proven medicine out there that can help him. I cannot stand by and watch him chew the ends of his fingers off from anxiety just because I don't like the idea of him taking pills. If we don't control his mood swings and lack of impulse control so prevalent among Super Heroes, academic progress stops and behavior management takes over 24/7. Make the choice.
----------------------------------------
As Good As It Gets... NOT!
October 5, 2012
As I've said a zillion times, this blog is my therapy! I need to write to purge and it's very therapeutic. Following a recent psych appointment with Jake where I was told we've reached the ceiling on two meds, I struggled to find the rainbow.
I've dreaded the day when the meds would stop working and now we're staring it in the eyes. As I trudged around behind my lawn mower this morning (also therapy) pieces of this poem popped into my head.
Don’t tell me it’s true.
There’s no pill to help with the things that he 'do'.
I knew it was coming, my blinders worked fine,
Building him up, while trying to save 'mine'.
Distraction!
Frustration!
Anger and Fear!
All close to the surface when appointment draws near.
Mrs. K it’s important, you must weigh the cost.
There’s not a med for the things you see most.
My mind starts racing, we’re at the top of the dose,
He’s growing so fast as we’re getting so close.
Don’t shut the door on our son, no don’t you dare.
He’s destined for greatness, to teach and to share.
I don’t want perfection, in our eyes, he is!
We love him and cherish him for joy that he brings.
To get through the day, the efforts are great.
Every minute is managed, I NEVER sleep late.
We walk several miles each day in the morn,
So he burns off energy to start the day worn.
His stimming and anxiety levels reach to the sky,
I watch him struggle to calm, still wearing a smile.
He's social and happy and living on the edge.
Puberty is knocking as I pace the ledge!
It breaks my heart to see the battle he wages,
Each day to survive, while I devour pages.
Again here we are, knocking on that door.
Don’t tell me we’re done, God tells me there's more.
October 5, 2012
As I've said a zillion times, this blog is my therapy! I need to write to purge and it's very therapeutic. Following a recent psych appointment with Jake where I was told we've reached the ceiling on two meds, I struggled to find the rainbow.
I've dreaded the day when the meds would stop working and now we're staring it in the eyes. As I trudged around behind my lawn mower this morning (also therapy) pieces of this poem popped into my head.
Don’t tell me it’s true.
There’s no pill to help with the things that he 'do'.
I knew it was coming, my blinders worked fine,
Building him up, while trying to save 'mine'.
Distraction!
Frustration!
Anger and Fear!
All close to the surface when appointment draws near.
Mrs. K it’s important, you must weigh the cost.
There’s not a med for the things you see most.
My mind starts racing, we’re at the top of the dose,
He’s growing so fast as we’re getting so close.
Don’t shut the door on our son, no don’t you dare.
He’s destined for greatness, to teach and to share.
I don’t want perfection, in our eyes, he is!
We love him and cherish him for joy that he brings.
To get through the day, the efforts are great.
Every minute is managed, I NEVER sleep late.
We walk several miles each day in the morn,
So he burns off energy to start the day worn.
His stimming and anxiety levels reach to the sky,
I watch him struggle to calm, still wearing a smile.
He's social and happy and living on the edge.
Puberty is knocking as I pace the ledge!
It breaks my heart to see the battle he wages,
Each day to survive, while I devour pages.
Again here we are, knocking on that door.
Don’t tell me we’re done, God tells me there's more.
------------------------------------------
Those Magic Little Pills
Thursday, March 10, 2011
The dreaded day came when Jake’s Super Powers just became too super for me! It was the day we decided that the fights, fits and tantrums every morning before school were putting me in danger. Jake’s rage strength gave him the power to slam me into a wall. I had been urinated on, vomited on and nearly pushed down the stairs too many times. The practiced ‘restraints’ were no longer working and we needed serious HELP!
It all started when we transitioned from Preschool (PEP INC) to Kindergarten (Elementary Learning Center) the mornings were exhausting and excruciating. Once we got him on the bus – I’d physically break down into a pile of mooshy muscles and a torrent of tears.
His fear/anxiety about this new school, the newness of the transition, different teachers and the switch in schedule forced Jake to put up a physical battle at the beginning of every single day. When he didn’t have the words to voice his frustration and fear it came out in other ways: he would bite, hit and even punch me while trying to get dressed.
To survive a day, we’d jog a mile before a meal so he could stay at table for 15 minutes; jump 200x’s on a trampoline before doing a dot-to-dot, and spin and spin and spin. We’d hit the playground and swing for 30 minutes after school. Brushing therapy, deep tissue massage and a boiling hot bath would calm him before bed nightly.
An awesome behavior therapist from Kennedy Krieger Institute came to our home to witness the ‘raw’ Jake and knew in the first five minutes that medicine was the only way. Our fears about medicating our 6 year old child were bubbling to the surface along with the tears.
The horror stories flashed through my mind endlessly. Would the pills take away Jake’s awesome personality? Would they put him into a zone where he couldn’t communicate at all? Could the combination of medicines hurt him? What happens when the meds stop working? These decisions danced in our heads and caused many sleepless nights.
After several months on a wait list, we finally got an appointment with one of the most renowned Neurodevelopmental Pediatricians in the country. He prescribed the smallest doses of two medicines… one ‘slower downer’ and one ‘anti-aggression’ tablet. We started slowly, because in addition to Jake’s sensitive sensory system, even a dusting of a pill can cause changes in our Super Hero.
I was terrified by that first dose. With shaking hands and a heavy heart, I gave Jake some pebbles of the new prescription. He chewed (yes chewed) them up took a swig of water then ran off to play.
SILENCE.{strange}
LONG SILENCE.{extremely rare}
LONGER SILENCE. {now I’m scared}
I went to check on him in his room. He was sitting on the bed looking at a book. Yes, SITTING and FOCUSING for minutes. Sharing pictures and talking to me about the book.
Medicinal Magic!!!!!
Our dude with the happy feet was suddenly able to sit at the table, do school work and projects, and stop his legs from running circles around the house. Our neighborhood runs turned into leisurely walks with conversation, jumps on the trampoline lessened and work at the table became FUN! The spinning for hours ceased and our mornings became joyful and relaxing. Jake could even tolerate both Chris and me at the table at the same time.
The balancing act had begun. As Jake grows, keeping his chemicals in check proves more and more challenging. We are facing our first med change: Taking the ‘slower downer’ to the next level. He’s grown so much in the last year that he’s built up tolerance and outgrown the dosage.
Again his legs are kicking at the table, morning runs are taking place up and down the hallways and now there’s an added feature of backtalk. (At least he’s not hitting me!) Now that he’s able to speak and verbalize his wants and desires, he’s a defiant little turkey, but actually pretty typical. “Why do I have to do that?” and “I don’t really feel like it.” Are the favorite responses when asked to help mommy out.
Sorta cool, sorta NOT!
I knew the time had come when I dropped him off at school the other day. His teachers, whom we adore, are aware that we’ve been headed toward this big transition for some time and understand timing is critical. But, two days of physical attacks, wetting pants, time outs and biting a teacher made it very clear. “It’s time!” is all I needed to hear from his classroom captain. Their support and input are invaluable.
Then I hear from the Super hero himself, “Mommy, I need more medicine to slow my brain and stop my legs. Can I get new pills?” WOW WOW
This weekend is the time! Making our first big switch to the new ‘slower downer’.
One pill for Jake, THREE for Mommy! Transition time begins again!
Those Magic Little Pills
Thursday, March 10, 2011
The dreaded day came when Jake’s Super Powers just became too super for me! It was the day we decided that the fights, fits and tantrums every morning before school were putting me in danger. Jake’s rage strength gave him the power to slam me into a wall. I had been urinated on, vomited on and nearly pushed down the stairs too many times. The practiced ‘restraints’ were no longer working and we needed serious HELP!
It all started when we transitioned from Preschool (PEP INC) to Kindergarten (Elementary Learning Center) the mornings were exhausting and excruciating. Once we got him on the bus – I’d physically break down into a pile of mooshy muscles and a torrent of tears.
His fear/anxiety about this new school, the newness of the transition, different teachers and the switch in schedule forced Jake to put up a physical battle at the beginning of every single day. When he didn’t have the words to voice his frustration and fear it came out in other ways: he would bite, hit and even punch me while trying to get dressed.
To survive a day, we’d jog a mile before a meal so he could stay at table for 15 minutes; jump 200x’s on a trampoline before doing a dot-to-dot, and spin and spin and spin. We’d hit the playground and swing for 30 minutes after school. Brushing therapy, deep tissue massage and a boiling hot bath would calm him before bed nightly.
An awesome behavior therapist from Kennedy Krieger Institute came to our home to witness the ‘raw’ Jake and knew in the first five minutes that medicine was the only way. Our fears about medicating our 6 year old child were bubbling to the surface along with the tears.
The horror stories flashed through my mind endlessly. Would the pills take away Jake’s awesome personality? Would they put him into a zone where he couldn’t communicate at all? Could the combination of medicines hurt him? What happens when the meds stop working? These decisions danced in our heads and caused many sleepless nights.
After several months on a wait list, we finally got an appointment with one of the most renowned Neurodevelopmental Pediatricians in the country. He prescribed the smallest doses of two medicines… one ‘slower downer’ and one ‘anti-aggression’ tablet. We started slowly, because in addition to Jake’s sensitive sensory system, even a dusting of a pill can cause changes in our Super Hero.
I was terrified by that first dose. With shaking hands and a heavy heart, I gave Jake some pebbles of the new prescription. He chewed (yes chewed) them up took a swig of water then ran off to play.
SILENCE.{strange}
LONG SILENCE.{extremely rare}
LONGER SILENCE. {now I’m scared}
I went to check on him in his room. He was sitting on the bed looking at a book. Yes, SITTING and FOCUSING for minutes. Sharing pictures and talking to me about the book.
Medicinal Magic!!!!!
Our dude with the happy feet was suddenly able to sit at the table, do school work and projects, and stop his legs from running circles around the house. Our neighborhood runs turned into leisurely walks with conversation, jumps on the trampoline lessened and work at the table became FUN! The spinning for hours ceased and our mornings became joyful and relaxing. Jake could even tolerate both Chris and me at the table at the same time.
The balancing act had begun. As Jake grows, keeping his chemicals in check proves more and more challenging. We are facing our first med change: Taking the ‘slower downer’ to the next level. He’s grown so much in the last year that he’s built up tolerance and outgrown the dosage.
Again his legs are kicking at the table, morning runs are taking place up and down the hallways and now there’s an added feature of backtalk. (At least he’s not hitting me!) Now that he’s able to speak and verbalize his wants and desires, he’s a defiant little turkey, but actually pretty typical. “Why do I have to do that?” and “I don’t really feel like it.” Are the favorite responses when asked to help mommy out.
Sorta cool, sorta NOT!
I knew the time had come when I dropped him off at school the other day. His teachers, whom we adore, are aware that we’ve been headed toward this big transition for some time and understand timing is critical. But, two days of physical attacks, wetting pants, time outs and biting a teacher made it very clear. “It’s time!” is all I needed to hear from his classroom captain. Their support and input are invaluable.
Then I hear from the Super hero himself, “Mommy, I need more medicine to slow my brain and stop my legs. Can I get new pills?” WOW WOW
This weekend is the time! Making our first big switch to the new ‘slower downer’.
One pill for Jake, THREE for Mommy! Transition time begins again!
-------------------------------------------
Super Hero Unplugged
March 25, 2011
Jake outgrowing his medicine has mommy and daddy racing back to our journals of how we dealt with ‘baby Jake’ of years gone by! Our Super Hero’s raw and funky sensory system makes his body crave all intense and constant motion; running, jumping, spinning, swinging. We’d run 2 miles while he pushed his ‘green guy’ (small green wheeled push vehicle) throughout the neighborhood at top speed. By 3 years old we’d log almost 2 miles a day and he’d barely break a sweat or even breathe heavy. His body needed this sensory input.
Like any child on medication, we always struggle with knowing when the right time to increase his medicine dose is. We try to walk that fine line between over-medicated--behaviorally sound--and available for learning! We watch carefully for signs of Jake unraveling, knowing he is not in control of his own body and miserable in his shoes. Sometimes signs surface slowly: not being able to sit at the table, finish a complete thought or stop biting his hands. When we talk to him, he’s often walking away from us or swaying his head side-to-side, spinning or darting off to slam the nearest door.
In the midst of this titration we’re banking on better days ahead but we need to first survive our “Hurricane Jake.”
Little things like a new seat at the table, food with a corner broken off, ice cream that’s too cold or cheese hanging off a sandwich will send him into a potential tailspin. “I need to go for a walk, I’m upset,” and off he goes. Outside for 5 seconds, then back in to announce he’s overwhelmed and needs a break. Two seconds later, “Mommy, are you mad at me? I forgive you. I need a snack. Do you still love me?” Then 5 more seconds, “Can I sit by you on the couch?” Just a blur of emotion and unharnessed energy.
Each morning when he wakes up, his body tells him to run. And I mean really run. It’s almost like the Fight or Flight response. He cannot stop his feet. Up and down the hallways with his IPod music blaring. So at 6am I’m unfortunately listening to YouTube Roller Coaster music! I usually grunt something like, “Go downstairs and wake me up at 7am!” He’s gone.
He inhales the small breakfast snacks I leave out for him the night before and he’s up ‘n down and up ‘n down, on the trampoline. (I am once again so thankful for the 9’ trampoline Auntie J and Auntie A purchased for Jake). He will jump for two hours straight! His body cannot calm down and the new slow release medicine takes a while to kick in.
He’s rockin’ and bouncin’ to his blasting IPod nonstop, enjoying the moment and how it makes his body feel. Then raw reality sets in when the bus comes. Transitioning from trampoline to transport can be a challenging dance and must be performed with the perfect synchronization of the Radio City Rockettes!
Off meds, anxiety is also back in the picture with a vengeance. He stresses about everything from the time the bus comes to using the bathroom to how long until he has until supper. He worries about what we’re doing tomorrow and who we are going to play with. And I don’t mean quiet worrying. It’s total perseveration.
“What happens tomorrow, what time, who will we play with, are we going to karate, then what’s next, are we going to see M, is daddy working, can we have wrestle-mania and play trains?” is ONE SENTENCE repeated over and over again in an effort to calm his body.
It pains me seeing him suffer like this, it only highlights the fact that the proper chemical balance is of utmost importance. If WE were suffering we’d take medicine – imagine how Jakey feels inside his skin when his senses are raw. That's what led us to consider the chemical question.
As much as I complain about how hard this titration process is, it has made us realize exactly how far we’ve come with Jake. It has forced our family to remember all the hard work he has done and all the tears we have shed together. These kids are not for the ‘weak of heart’ and we can’t imagine our lives without our Super Hero; jumping, jumbled joy!
--------------------------------------------
Well, Now We're Screwed
August 11, 2011
IT will happen.
If IT hasn’t yet,
IT will.
Keep working with your Super Hero, dedicate your lives to them and they will eventually meld into someone closer to typical, beautifully bold and someone you don’t even know!
Thanks to the tweaking of a vitamin or two and already prescribed medicines, Jake is developing new behaviors and habits just like the kids in the neighborhood, his peer group. This is very exciting. We are blessed to be able to witness many miracles happening every day.
I love that feeling of astonishment when a novel and spontaneous phrase falls off his tongue. I usually look at Chris (or our best friend MS) with our jaws on the floor and eyes popping from our heads! All are usually holding back tears of amazement as we watch Jake destroy yet another developmental milestone. Better late than never.
Despite a couple really rough growing pains in the past couple of weeks, (and I don’t use the word rough, lightly, trust me I have bruises to prove it) something new has connected in his brain. More circuits are firing and more signals are being received. This is good and bad.
Since Jake already has the hearing of a bat; he’s able to eves-drop on a conversation taking place across the house (yes even if we’re whispering). He listens, thinks and draws some very clever conclusions. He’s connecting the dots and frankly I’m scared!
Reading and comprehension have also clicked. “Mom, the speed limit is 40!” I hear from the backseat. “There’s West 58 and East 58, what direction are we going mommy?” Oh crap, I don’t know! “We’re going left buddy, which direction is that?”
I can't even text or chat with someone on the computer anymore, he can read it and understand it!
Our new chemical concoction has produced drier days (fewer accidents) and slightly later bed times. He’s closer to “ordinary” than not! Yee Haw!!!
As I asked my mom the other day, “What the hell do we do now?” I can deal with any sensory issue, quell most tantrums, ignore most behaviors, bounce a kid on my lap for hours, but when they talk back, win logical arguments and correct me, HELP!
Here's the equation I'm working on comprehending.
Unbelievable Hearing + Extraordinary Eyesight + Outstanding Olfactory System + Ridiculous Vestibular/Proprioceptive System = A miraculous bundle!!
Now add: talking back, sarcasm, scheming, joking, name-calling, questioning, doubting, engaging, attention-seeking, teasing, tickling and tormenting! That’s a combination that would scare the best of parents and currently that’s Super Duper Hero Jake.
No longer can we just treat the symptoms of Autism. We need to out-smart, out-last and over plan every minute of every day. Our job just got a lot harder. Makes me think we’ve had it easy all these years.
----------------------------------------
Emergency: Irony
October 18, 2011
Given the way our summer ended and our school year began, what happened recently was sort of inevitable, almost expected. Our poor Super Hero has basically outgrown his medicine doses and is slowly coming unraveled as he grows. It’s painful to watch and difficult to see our usually happy kiddo, uncomfortable in his own skin at times.
The call came around 2pm from the school. I’ve received so many calls lately, I changed the Caller ID to say, “I love Jake, give me strength!” and gave it a super special bat-phone ring tone. I was just leaving the gym. I was pumped, I had just flipped my first man during Jiu Jitsu class and worked my buns off.
“Mrs. K, you need to pick up Jake from school,” the frantic-but-trying-to-be-calm caller told me.
“He put his arms through a window here and needs to see a doctor.” Upon further inspection from the school nurse and principal it was decided that 9-1-1 needed to be called. “Call 911, Mr. L will ride with him.”
I’m now turning the car around with my heart in my throat. I can feel my heart beating in my temples while I try to remember how on earth to get to the hospital. I’m only a mile away, but after all the wrong turns I made driving with my body flushed with adrenalin, I finally made it.
Wrong turn into the parking lot. Turn around, (illegally of course) contemplate driving over the curb, go out and back in the next lot… finally. My eyes scan the ambulance bay, imagining the meltdown Jake is surely in the middle of and praying our beloved teacher (JL) is working his magic in the back of the rolling hospital.
I park and walk into the Emergency Room. As calmly as I could I explain to the woman in front that my son will be coming in and there’s a great chance he’ll be hysterical, restraint could be necessary. I wasn’t there long before the school psych strolled up, I swear staying calm is a job requirement and must be genetic for GB.
“How do I need to be right now?” I asked him because was so pissed. “I was ready to scream my head off…”
“Let’s be worried today,” he answered. I'll try. Gotcha.
He explained to me what happened at school to trigger this incident, the usual trigger amazingly caused a major energy/frustration burst and powie, he punched the window in anger and went through the glass. I’m told he was shocked that he actually broke the glass and then became scared. Staffers from school stayed with me in the ER until Chris was able to get there. They’re so supportive and really care about Jakeman.
I enter the room where Jake is in a bed grinning ear to ear. After a few quick questions that were not exactly positive (I swear I was trying to sound worried), his teacher jumped into the conversation to redirect to how great Jake handled the ambulance ride.
Jake excitedly explained to me how there were cool machines, neat beeping noises that went faster with the speed of his heart (mind you that alone would have blown his mind a couple years ago), and the nice guys in there wrapped up his hands.
A quick check by the nurse, Xrays ordered to check for embedded glass, and a short doctor introduction. Down the hall to radiology thrilled him to no end, “I’m going down the hall in a bed!!!!” Sigh.
“This is really not that cool Jake!”
“Does it make a loud noise, my super power ears hear the Xray noise but it sounds different than the last Xray of my hand back in August and different from the dentist.”
Uuuhhh. speechless.
“Zzzzbbbtttt jiggle jiggle, does it go like that mommy?”
“Sure did buddy… hold still for another film.”
Upon return to our room, daddy was there! Jake was parked back in his spot behind the curtain and started examining the reapplication of his bandages from radiology… not so great; he could see more blood now. I swear more stress comes from seeing the wound than actually having the wound.
Jake started examining the stained blood on his hands and arms, “I’m just like Jesus now mommy, right?” I was stunned. I just stood there with my mouth open trying to decide how to react.
Chris probed…
“How are you like Jesus, now?”
Jake couldn’t come up with the right words, but just stared at his hands.
I added, “I don’t think Jesus punches out windows, does he?” (yeah, sarcasm, brilliant I know.)
Eyes down, sigh, “No.”
Our awesome school staffers GB and JL left after reinforcing Jake for staying calm and cool. It really is nothing short of a miracle. Shortly after that the doctor appeared to clean up his cuts. Six total cuts, 2 good ones that could be stitched, but we talked the ER doc into gluing instead. Only one yelp from our Super hero when they cleaned the biggest cut up near Jake’s bicep, thankfully they did it last!
As we’re heading out the ER Ped door, “Let’s go look at the elevators!!”
“No!”
“Let’s just look, we don’t have to ride!”
“No, means no! Let’s go.”
“OK, we’ll ride them next time!”
Chris and I turned around and our brains became one, “THERE WON’T BE A NEXT TIME, WALK!” in unison.
The ride home included a quick Taco Bell hit then home to bed. The nachos and drippy cheese distracted Jake enough in the back seat that he seemed to forget all about his wounds. Cheese caked the Band-Aid on his wrist and the glue on the palm of one hand but he didn’t even notice.
From the back seat I hear a giddy little voice through the crunching, “That was so cool. Wheels on my bed. The ZZZbbbttt chu-chunk sound of the big picture machine. Hooks to hang things in the ceiling. My bed goed up and down. The ambulance ride was sooooooo coooooooollll!!!”
“Jake this isn’t really so cool. And if you love it so much, maybe you could get a job in a hospital!”
“Oh, that’d be cooooooooooooool!”
Sigh Sigh SIGH.
Once home, he passed out quickly, I was on the phone for 2 hours with the school principal and 3 doctors: neuro dev, behaviorist and psychiatrist. Wow, I love our doctors!
My day after was spent with a headache much of the day. Can Jake get over this problem at school? Will a new medicine help him calm down or make him crazy? How will we manage this developing and very strong OCD? Is he safe at school? Are other children safe in his presence? Is our new BIP good enough? What happens next? Can he learn when he’s so out of his skin? How can one child be so freakin’ complex? He so needs a one-on-one during unstructured time.
I realize all kids are complex and we are so blessed to have ‘Crash’…. I mean Jake. But boy, some days he boggles my mind. This new love and excitement for the ER, really? The very place we used to threaten him with when he’s behaving unsafely now thrills him to no end. MOMMY GGGRRRRR.
Good night Jake, you are my heart and my headache. I will love you forever.
--------------------------------------------------
Swallowy, Chewy, Melty
November 3, 2011
The world of medicine is a crazy existence I had never experienced until our Super Hero became too uncomfortable in his skin. Now I can cut, slice, and decimate pills with the best of them.
The good thing is: Jake reacts to the smallest spec of chemicals so we have some growing room.
The bad thing is: once you start it’s really, really tough to stop.
We resisted chemicals for our hero as long as we could, but then the inevitable happened: Jake actually became dangerous without realizing it and was unable to reign in his rage strength.
Deciding to delve into the world of meds was a decision made out of sheer desperation. Every morning became a battle ground just trying to get to the school bus. I can remember physical battles, being peed on, thrown up on, hit, punched and slapped all before 8am. We would get Jake on the bus and I would crumble into a heap of defeat on the front steps.
The hardest hurdle for us was to totally trust the men and women in the white coats. Do the research; it’s your child’s life and we asked tons of questions. Careful consideration went in to the decision before the first dose was delivered. Would the pills change his personality; make him too sleepy or zone him out altogether? Valid arguments before taking the leap, doctors have heard them before.
We’re blessed to have a really great team of doctors who cautiously and carefully tweak the scripts, week to week, or day to day. Balancing the chemicals can get dicey when these darn kids grow!
As their frames fill out their own chemical make-up also changes and the drugs don’t seem to work anymore. We’re at a point right now where Jake is reaching pre-puberty and becoming aggressive and very, very strong. We have no choice but to up the med that helps with his impulse control or he’s going to hurt someone or himself. It’s actually quite amazing how those little melty tablets can stop him from pounding holes in the drywall. He’s still the amazing spunky and spirited self, trust me on this one.
But where do we draw the line? How many meds are too many? How many mg’s are dangerous? Should we risk side effects like diabetes and weight gain in the name of good behavior, education and safety? What about liver damage: a new pill will help him stay even-tempered but could damage his liver. The decisions are heart wrenching and very hard.
We must think about what Jake’s body is going through just to survive a day fully engaged, often over engaged, in this world. The anxiety, stress and sensory overload of just being in school are exhausting for him. We can’t imagine him without some chemical comfort.
I joke with the doctors if Jake gets prescribed something really good they may have to double the dose: Two for me – one for Jake!
Super Hero Unplugged
March 25, 2011
Jake outgrowing his medicine has mommy and daddy racing back to our journals of how we dealt with ‘baby Jake’ of years gone by! Our Super Hero’s raw and funky sensory system makes his body crave all intense and constant motion; running, jumping, spinning, swinging. We’d run 2 miles while he pushed his ‘green guy’ (small green wheeled push vehicle) throughout the neighborhood at top speed. By 3 years old we’d log almost 2 miles a day and he’d barely break a sweat or even breathe heavy. His body needed this sensory input.
Like any child on medication, we always struggle with knowing when the right time to increase his medicine dose is. We try to walk that fine line between over-medicated--behaviorally sound--and available for learning! We watch carefully for signs of Jake unraveling, knowing he is not in control of his own body and miserable in his shoes. Sometimes signs surface slowly: not being able to sit at the table, finish a complete thought or stop biting his hands. When we talk to him, he’s often walking away from us or swaying his head side-to-side, spinning or darting off to slam the nearest door.
In the midst of this titration we’re banking on better days ahead but we need to first survive our “Hurricane Jake.”
Little things like a new seat at the table, food with a corner broken off, ice cream that’s too cold or cheese hanging off a sandwich will send him into a potential tailspin. “I need to go for a walk, I’m upset,” and off he goes. Outside for 5 seconds, then back in to announce he’s overwhelmed and needs a break. Two seconds later, “Mommy, are you mad at me? I forgive you. I need a snack. Do you still love me?” Then 5 more seconds, “Can I sit by you on the couch?” Just a blur of emotion and unharnessed energy.
Each morning when he wakes up, his body tells him to run. And I mean really run. It’s almost like the Fight or Flight response. He cannot stop his feet. Up and down the hallways with his IPod music blaring. So at 6am I’m unfortunately listening to YouTube Roller Coaster music! I usually grunt something like, “Go downstairs and wake me up at 7am!” He’s gone.
He inhales the small breakfast snacks I leave out for him the night before and he’s up ‘n down and up ‘n down, on the trampoline. (I am once again so thankful for the 9’ trampoline Auntie J and Auntie A purchased for Jake). He will jump for two hours straight! His body cannot calm down and the new slow release medicine takes a while to kick in.
He’s rockin’ and bouncin’ to his blasting IPod nonstop, enjoying the moment and how it makes his body feel. Then raw reality sets in when the bus comes. Transitioning from trampoline to transport can be a challenging dance and must be performed with the perfect synchronization of the Radio City Rockettes!
Off meds, anxiety is also back in the picture with a vengeance. He stresses about everything from the time the bus comes to using the bathroom to how long until he has until supper. He worries about what we’re doing tomorrow and who we are going to play with. And I don’t mean quiet worrying. It’s total perseveration.
“What happens tomorrow, what time, who will we play with, are we going to karate, then what’s next, are we going to see M, is daddy working, can we have wrestle-mania and play trains?” is ONE SENTENCE repeated over and over again in an effort to calm his body.
It pains me seeing him suffer like this, it only highlights the fact that the proper chemical balance is of utmost importance. If WE were suffering we’d take medicine – imagine how Jakey feels inside his skin when his senses are raw. That's what led us to consider the chemical question.
As much as I complain about how hard this titration process is, it has made us realize exactly how far we’ve come with Jake. It has forced our family to remember all the hard work he has done and all the tears we have shed together. These kids are not for the ‘weak of heart’ and we can’t imagine our lives without our Super Hero; jumping, jumbled joy!
--------------------------------------------
Well, Now We're Screwed
August 11, 2011
IT will happen.
If IT hasn’t yet,
IT will.
Keep working with your Super Hero, dedicate your lives to them and they will eventually meld into someone closer to typical, beautifully bold and someone you don’t even know!
Thanks to the tweaking of a vitamin or two and already prescribed medicines, Jake is developing new behaviors and habits just like the kids in the neighborhood, his peer group. This is very exciting. We are blessed to be able to witness many miracles happening every day.
I love that feeling of astonishment when a novel and spontaneous phrase falls off his tongue. I usually look at Chris (or our best friend MS) with our jaws on the floor and eyes popping from our heads! All are usually holding back tears of amazement as we watch Jake destroy yet another developmental milestone. Better late than never.
Despite a couple really rough growing pains in the past couple of weeks, (and I don’t use the word rough, lightly, trust me I have bruises to prove it) something new has connected in his brain. More circuits are firing and more signals are being received. This is good and bad.
Since Jake already has the hearing of a bat; he’s able to eves-drop on a conversation taking place across the house (yes even if we’re whispering). He listens, thinks and draws some very clever conclusions. He’s connecting the dots and frankly I’m scared!
Reading and comprehension have also clicked. “Mom, the speed limit is 40!” I hear from the backseat. “There’s West 58 and East 58, what direction are we going mommy?” Oh crap, I don’t know! “We’re going left buddy, which direction is that?”
I can't even text or chat with someone on the computer anymore, he can read it and understand it!
Our new chemical concoction has produced drier days (fewer accidents) and slightly later bed times. He’s closer to “ordinary” than not! Yee Haw!!!
As I asked my mom the other day, “What the hell do we do now?” I can deal with any sensory issue, quell most tantrums, ignore most behaviors, bounce a kid on my lap for hours, but when they talk back, win logical arguments and correct me, HELP!
Here's the equation I'm working on comprehending.
Unbelievable Hearing + Extraordinary Eyesight + Outstanding Olfactory System + Ridiculous Vestibular/Proprioceptive System = A miraculous bundle!!
Now add: talking back, sarcasm, scheming, joking, name-calling, questioning, doubting, engaging, attention-seeking, teasing, tickling and tormenting! That’s a combination that would scare the best of parents and currently that’s Super Duper Hero Jake.
No longer can we just treat the symptoms of Autism. We need to out-smart, out-last and over plan every minute of every day. Our job just got a lot harder. Makes me think we’ve had it easy all these years.
----------------------------------------
Emergency: Irony
October 18, 2011
Given the way our summer ended and our school year began, what happened recently was sort of inevitable, almost expected. Our poor Super Hero has basically outgrown his medicine doses and is slowly coming unraveled as he grows. It’s painful to watch and difficult to see our usually happy kiddo, uncomfortable in his own skin at times.
The call came around 2pm from the school. I’ve received so many calls lately, I changed the Caller ID to say, “I love Jake, give me strength!” and gave it a super special bat-phone ring tone. I was just leaving the gym. I was pumped, I had just flipped my first man during Jiu Jitsu class and worked my buns off.
“Mrs. K, you need to pick up Jake from school,” the frantic-but-trying-to-be-calm caller told me.
“He put his arms through a window here and needs to see a doctor.” Upon further inspection from the school nurse and principal it was decided that 9-1-1 needed to be called. “Call 911, Mr. L will ride with him.”
I’m now turning the car around with my heart in my throat. I can feel my heart beating in my temples while I try to remember how on earth to get to the hospital. I’m only a mile away, but after all the wrong turns I made driving with my body flushed with adrenalin, I finally made it.
Wrong turn into the parking lot. Turn around, (illegally of course) contemplate driving over the curb, go out and back in the next lot… finally. My eyes scan the ambulance bay, imagining the meltdown Jake is surely in the middle of and praying our beloved teacher (JL) is working his magic in the back of the rolling hospital.
I park and walk into the Emergency Room. As calmly as I could I explain to the woman in front that my son will be coming in and there’s a great chance he’ll be hysterical, restraint could be necessary. I wasn’t there long before the school psych strolled up, I swear staying calm is a job requirement and must be genetic for GB.
“How do I need to be right now?” I asked him because was so pissed. “I was ready to scream my head off…”
“Let’s be worried today,” he answered. I'll try. Gotcha.
He explained to me what happened at school to trigger this incident, the usual trigger amazingly caused a major energy/frustration burst and powie, he punched the window in anger and went through the glass. I’m told he was shocked that he actually broke the glass and then became scared. Staffers from school stayed with me in the ER until Chris was able to get there. They’re so supportive and really care about Jakeman.
I enter the room where Jake is in a bed grinning ear to ear. After a few quick questions that were not exactly positive (I swear I was trying to sound worried), his teacher jumped into the conversation to redirect to how great Jake handled the ambulance ride.
Jake excitedly explained to me how there were cool machines, neat beeping noises that went faster with the speed of his heart (mind you that alone would have blown his mind a couple years ago), and the nice guys in there wrapped up his hands.
A quick check by the nurse, Xrays ordered to check for embedded glass, and a short doctor introduction. Down the hall to radiology thrilled him to no end, “I’m going down the hall in a bed!!!!” Sigh.
“This is really not that cool Jake!”
“Does it make a loud noise, my super power ears hear the Xray noise but it sounds different than the last Xray of my hand back in August and different from the dentist.”
Uuuhhh. speechless.
“Zzzzbbbtttt jiggle jiggle, does it go like that mommy?”
“Sure did buddy… hold still for another film.”
Upon return to our room, daddy was there! Jake was parked back in his spot behind the curtain and started examining the reapplication of his bandages from radiology… not so great; he could see more blood now. I swear more stress comes from seeing the wound than actually having the wound.
Jake started examining the stained blood on his hands and arms, “I’m just like Jesus now mommy, right?” I was stunned. I just stood there with my mouth open trying to decide how to react.
Chris probed…
“How are you like Jesus, now?”
Jake couldn’t come up with the right words, but just stared at his hands.
I added, “I don’t think Jesus punches out windows, does he?” (yeah, sarcasm, brilliant I know.)
Eyes down, sigh, “No.”
Our awesome school staffers GB and JL left after reinforcing Jake for staying calm and cool. It really is nothing short of a miracle. Shortly after that the doctor appeared to clean up his cuts. Six total cuts, 2 good ones that could be stitched, but we talked the ER doc into gluing instead. Only one yelp from our Super hero when they cleaned the biggest cut up near Jake’s bicep, thankfully they did it last!
As we’re heading out the ER Ped door, “Let’s go look at the elevators!!”
“No!”
“Let’s just look, we don’t have to ride!”
“No, means no! Let’s go.”
“OK, we’ll ride them next time!”
Chris and I turned around and our brains became one, “THERE WON’T BE A NEXT TIME, WALK!” in unison.
The ride home included a quick Taco Bell hit then home to bed. The nachos and drippy cheese distracted Jake enough in the back seat that he seemed to forget all about his wounds. Cheese caked the Band-Aid on his wrist and the glue on the palm of one hand but he didn’t even notice.
From the back seat I hear a giddy little voice through the crunching, “That was so cool. Wheels on my bed. The ZZZbbbttt chu-chunk sound of the big picture machine. Hooks to hang things in the ceiling. My bed goed up and down. The ambulance ride was sooooooo coooooooollll!!!”
“Jake this isn’t really so cool. And if you love it so much, maybe you could get a job in a hospital!”
“Oh, that’d be cooooooooooooool!”
Sigh Sigh SIGH.
Once home, he passed out quickly, I was on the phone for 2 hours with the school principal and 3 doctors: neuro dev, behaviorist and psychiatrist. Wow, I love our doctors!
My day after was spent with a headache much of the day. Can Jake get over this problem at school? Will a new medicine help him calm down or make him crazy? How will we manage this developing and very strong OCD? Is he safe at school? Are other children safe in his presence? Is our new BIP good enough? What happens next? Can he learn when he’s so out of his skin? How can one child be so freakin’ complex? He so needs a one-on-one during unstructured time.
I realize all kids are complex and we are so blessed to have ‘Crash’…. I mean Jake. But boy, some days he boggles my mind. This new love and excitement for the ER, really? The very place we used to threaten him with when he’s behaving unsafely now thrills him to no end. MOMMY GGGRRRRR.
Good night Jake, you are my heart and my headache. I will love you forever.
--------------------------------------------------
Swallowy, Chewy, Melty
November 3, 2011
The world of medicine is a crazy existence I had never experienced until our Super Hero became too uncomfortable in his skin. Now I can cut, slice, and decimate pills with the best of them.
The good thing is: Jake reacts to the smallest spec of chemicals so we have some growing room.
The bad thing is: once you start it’s really, really tough to stop.
We resisted chemicals for our hero as long as we could, but then the inevitable happened: Jake actually became dangerous without realizing it and was unable to reign in his rage strength.
Deciding to delve into the world of meds was a decision made out of sheer desperation. Every morning became a battle ground just trying to get to the school bus. I can remember physical battles, being peed on, thrown up on, hit, punched and slapped all before 8am. We would get Jake on the bus and I would crumble into a heap of defeat on the front steps.
The hardest hurdle for us was to totally trust the men and women in the white coats. Do the research; it’s your child’s life and we asked tons of questions. Careful consideration went in to the decision before the first dose was delivered. Would the pills change his personality; make him too sleepy or zone him out altogether? Valid arguments before taking the leap, doctors have heard them before.
We’re blessed to have a really great team of doctors who cautiously and carefully tweak the scripts, week to week, or day to day. Balancing the chemicals can get dicey when these darn kids grow!
As their frames fill out their own chemical make-up also changes and the drugs don’t seem to work anymore. We’re at a point right now where Jake is reaching pre-puberty and becoming aggressive and very, very strong. We have no choice but to up the med that helps with his impulse control or he’s going to hurt someone or himself. It’s actually quite amazing how those little melty tablets can stop him from pounding holes in the drywall. He’s still the amazing spunky and spirited self, trust me on this one.
But where do we draw the line? How many meds are too many? How many mg’s are dangerous? Should we risk side effects like diabetes and weight gain in the name of good behavior, education and safety? What about liver damage: a new pill will help him stay even-tempered but could damage his liver. The decisions are heart wrenching and very hard.
We must think about what Jake’s body is going through just to survive a day fully engaged, often over engaged, in this world. The anxiety, stress and sensory overload of just being in school are exhausting for him. We can’t imagine him without some chemical comfort.
I joke with the doctors if Jake gets prescribed something really good they may have to double the dose: Two for me – one for Jake!
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Swallow, DO NOT CHEW!
March 16, 2011
Our morning started with way too much excitement. Unfortunately, an ambulance was called to our neighbor’s house. As per usual, they send two ambulances and a ladder truck. Yes, really.
At 5am, Jake comes bursting in to our room because the flashing lights and roaring engines in our front yard woke him up.
“Someone’s getting the help they need, right mommy?”
“Yea buddy,” I grumble as I roll over and pull the sheets over my head to block the flashing lights.
With his heart racing and hands shaking from excitement, Jake struggled to open our drapes and blinds so he could watch the paramedics at work.
Apparently, the upstairs view of the massive fire truck wasn’t good enough so he charged downstairs, barely dressed and pulled back the curtains.
I’m praying now, please don’t go outside in your underwear, please don’t go outside in your underwear. Oh Lord, don’t let him go say hello to the firemen in his underwear.
Thankfully, he perched himself on Sam’s little window seat and didn’t realize (or realized but didn’t care) that he was sitting on the bottom of floor length curtains. He managed to yank the curtain rod from the wall on one side so it’s now hanging diagonally above the window. The rod was still dangling when I came downstairs. So with sticky morning eyes, I start searching for the screws that had fallen from the now GIANT holes in the drywall.
By 5:45am the trucks were gone, but our Super hero was WIDE awake playing his IPod. All is well until 6:30am when he announced he was really hungry and needed some ‘snack’. I decided to get up and get his medicine ready for the day. We’ve recently started a new slow-release version of his usual medicine and are slowly titrating to that pill… the downside is it makes him tired and he has to swallow it whole.
The medicine is meant to slow him down so he can think and attend but at this new dose, it still makes him a little more sleepy and he hates that. (yay body awareness)
“Not my swallowing pill, I don’t want my swallowing pill! It makes me sleepy at school!” I tried my best to ignore this drama and gave him his other pills first. After pouring a big glass of his favorite apple juice I handed him his “swallowing pill”. He took the usual 3 sips it takes for him to get the chalky pill down and disappeared from the room. Moments later, “I chewed the swallowing pill because I don’t want to fall asleep.”
My heart is now in my throat, realizing that by chewing it, he just gave himself a 24 hour dose of blood pressure medication at 7am.
Do I cry? Want to.
Do I smack him? Really want to. (Considered it)
Can I speak or think rationally? Nope.
Do I call 911 or poison control? Uuummm
Knowing what I know about taking this kiddo to the hospital, I pulled up the Internet. Okay for all of you self-diagnosing friends out there – big mistake right.
“Seek emergency medical attention; symptoms include drowsiness, dizziness, extremely slow heart rate, passing out… the arteries around the heart may relax causing blood flow to……. Blah blah blah….”
My heart is pounding out of my chest – maybe I should chew one! (yes the thought crossed my mind)
I called his doctors cell phone at 7:30am! Yes, bold move I know. Our awesome Neuro-developmentalist assured and reassured me that “the damage you’re about to do to him Mrs. K will be much worse than what the overdose will,” he said laughing. Then instructed me to take his blood pressure twice throughout the day to monitor and strangling him would be a bad idea.
I drove my sedated and extremely mellow Super Hero to school, afraid of what could happen if he passed out on the school bus and explained the situation to his teachers. It’s very likely he will have another “very big dream in language arts and wake up in math class” today.
First check in from nurse: BP 96/57 pulse at 83 at 11am. Whew. Low but okay. I’m betting he’ll be in bed by 5pm tonight.
Some days, life with our Super Hero can be a hard pill to swallow!
Breathe in 5-4-3-2-1, Breathe out 1-2-3-4-5, Breathe in 5-4-3-2-1, Breathe in 1-2-3-4-5.
Swallow, DO NOT CHEW!
March 16, 2011
Our morning started with way too much excitement. Unfortunately, an ambulance was called to our neighbor’s house. As per usual, they send two ambulances and a ladder truck. Yes, really.
At 5am, Jake comes bursting in to our room because the flashing lights and roaring engines in our front yard woke him up.
“Someone’s getting the help they need, right mommy?”
“Yea buddy,” I grumble as I roll over and pull the sheets over my head to block the flashing lights.
With his heart racing and hands shaking from excitement, Jake struggled to open our drapes and blinds so he could watch the paramedics at work.
Apparently, the upstairs view of the massive fire truck wasn’t good enough so he charged downstairs, barely dressed and pulled back the curtains.
I’m praying now, please don’t go outside in your underwear, please don’t go outside in your underwear. Oh Lord, don’t let him go say hello to the firemen in his underwear.
Thankfully, he perched himself on Sam’s little window seat and didn’t realize (or realized but didn’t care) that he was sitting on the bottom of floor length curtains. He managed to yank the curtain rod from the wall on one side so it’s now hanging diagonally above the window. The rod was still dangling when I came downstairs. So with sticky morning eyes, I start searching for the screws that had fallen from the now GIANT holes in the drywall.
By 5:45am the trucks were gone, but our Super hero was WIDE awake playing his IPod. All is well until 6:30am when he announced he was really hungry and needed some ‘snack’. I decided to get up and get his medicine ready for the day. We’ve recently started a new slow-release version of his usual medicine and are slowly titrating to that pill… the downside is it makes him tired and he has to swallow it whole.
The medicine is meant to slow him down so he can think and attend but at this new dose, it still makes him a little more sleepy and he hates that. (yay body awareness)
“Not my swallowing pill, I don’t want my swallowing pill! It makes me sleepy at school!” I tried my best to ignore this drama and gave him his other pills first. After pouring a big glass of his favorite apple juice I handed him his “swallowing pill”. He took the usual 3 sips it takes for him to get the chalky pill down and disappeared from the room. Moments later, “I chewed the swallowing pill because I don’t want to fall asleep.”
My heart is now in my throat, realizing that by chewing it, he just gave himself a 24 hour dose of blood pressure medication at 7am.
Do I cry? Want to.
Do I smack him? Really want to. (Considered it)
Can I speak or think rationally? Nope.
Do I call 911 or poison control? Uuummm
Knowing what I know about taking this kiddo to the hospital, I pulled up the Internet. Okay for all of you self-diagnosing friends out there – big mistake right.
“Seek emergency medical attention; symptoms include drowsiness, dizziness, extremely slow heart rate, passing out… the arteries around the heart may relax causing blood flow to……. Blah blah blah….”
My heart is pounding out of my chest – maybe I should chew one! (yes the thought crossed my mind)
I called his doctors cell phone at 7:30am! Yes, bold move I know. Our awesome Neuro-developmentalist assured and reassured me that “the damage you’re about to do to him Mrs. K will be much worse than what the overdose will,” he said laughing. Then instructed me to take his blood pressure twice throughout the day to monitor and strangling him would be a bad idea.
I drove my sedated and extremely mellow Super Hero to school, afraid of what could happen if he passed out on the school bus and explained the situation to his teachers. It’s very likely he will have another “very big dream in language arts and wake up in math class” today.
First check in from nurse: BP 96/57 pulse at 83 at 11am. Whew. Low but okay. I’m betting he’ll be in bed by 5pm tonight.
Some days, life with our Super Hero can be a hard pill to swallow!
Breathe in 5-4-3-2-1, Breathe out 1-2-3-4-5, Breathe in 5-4-3-2-1, Breathe in 1-2-3-4-5.
