Schedules and Expectations (9)
Pills, Police and the Scariest Parenting Day of Our Lives
March 2018
First, know that I'm writing this piece with full permission from Jake. I don't normally ask permission from anyone before I purge, but this time I asked him, my husband and my sister for advice. I guess I'm nervous and the feelings are still raw from our experience(s) a couple weeks ago.
I want to share this as a warning for everyone, that even if you think "oh my kid would never do that", all bets are off the table in the midst of puberty and autism.
It was a Friday. The day started for me with a phone call from the school nurse. "Do you know Jake took medicine you didn't know about?" My brain instantly raced through what medicine we kept unlocked. All meds are securely pad-locked inside a safe. "He says he took 3 Advil," the nurse continued.
I started walking around the house looking for the bottle. There it was, unlocked in my room. There was only one pill left. Crap, he sure did. It was on my night stand in our bedroom. The same place I keep the melatonin. (hold on to this for later).
I instantly felt like the worse parent on the planet. That whisper voice in my head now screaming full tilt, "you know you should have hidden them!", "why on earth would you leave them on your night stand?" and on and on and on. I quickly tried to think of excuses to relieve me from this guilt and came up empty. I sank into the couch and listened to the nurse. Thinking back to a conversation we recently had with Jake about how Michael Jackson and Tom Petty died, "too much of any medicine is dangerous", we told him.
The nurse and I did share a laugh at one point, she reported that while she was taking Jake's blood pressure, which is typically excellent, she mentioned calmly to Jake that she has to "tell your parents" about this. She watched his pressure skyrocket and nearly blast the cuff open. Poor thing... I guess we still have some power.
Before picking him up from school, I stopped in the local CVS to pick up a single serve pill carrier. Thinking that this would shock him enough, I wouldn't even need to speak. We never had one as he's been managing his 7-day med container independently for more than a year or more. Sure we have had little slips and took the pm meds in the am and vice versa, but never an intentional extra dosing.
He was slow to come out for pick up and when he arrived to the lobby, he was shaking and I was able to act like nothing ever happened. I was happy and calm, as I usually am at pick up time, and it threw him off his game. All the way home in the car, he kept leaning forward to see my facial expression. He reads my entire mood by the look on my lips. Straight-line mouth=he's in trouble. Corners turned down=mommy is sad/tired and needs a joke and classical music. Corners turned up=all is well in the world. So I had corners turned up all the way home. (I'd like to thank the Academy...)
I wanted him to bring it up first. He didn't. My silence was torture. As we rounded the corner into our neighborhood, the single-serv pill carrier flipped in my cup holder. He saw it and immediately asked, "what's that?" I explained calmly that, "it is a new pill holder so he'd be extra safe when taking medicine." Instantly, his eyes started darting left-right-left, his breathing became shallow and his skin flushed. "I DON'T NEED THIS. I DON'T WANT THIS!"
I answered calmly, "Daddy and I think you do, because you made a very dangerous mistake by taking extra medicine." As I turned into our driveway, Jake jumped out of the moving car and ran.
I fumbled to get the car in Park, jumped out behind him, screamed his name as I watched him disappear. Now my heart was racing. My eyes darting left-right-left, scanning the gray and drizzly landscape for my heart. Instantly, the trainings we've told police over and over and over again, started playing in my mind. "First thing is to always call the police. Don't waste a minute!"
Then the whisper voice: "my kid is the damn police ambassador, I can't call the police on him?" "What will they think?" "What if he really does something stupid?" Wait, he already did something stupid.
My shaking fingers found their way to 9-1-1 on my phone. When you're on the line with emergency services, you instantly forget how tall your kid is, what he looks like, what he's wearing, and everything is blank. The kind officer kept asking me questions and I know I answered more than one with, "It's Jake, your police ambassador, he trained you, you know him!" I surely sounded like that panicked, bitchy, out-of-control parent, but at that moment I was.
I died a thousand times per minute he was on the run... all 25 of them.
My heart was running wild in the woods, a vast state park that surrounds our property, that's lined by two pretty big state highways. In one minute, he could run to the highway and be gone. He's not in control when upset and cannot make sound decisions when he's upset. Unexpected consequences are life shattering.
I called Chris to come home, tears mixing with drizzle on my cheeks, but sweat stinging my eyes at the same time. He was in DC but made it home in record time. No, of course, he never broke the speed limit.
Next I texted Jake's "security detail" (the police he trains alongside) with simply a "9-1-1 Jake ran". The dispatcher told me to stay home and wait for the police to arrive. Clearly they don't know how fast Jake can run, or that it's virtually impossible to stop a parent from searching from her heart. Alone. On the run.
I tapped my dear neighbor friend to go look for Jake. I asked her to drive down to the playground and then the soccer field to look for him. At that time, her son also took a walk. He saw Jake dart away 10 minutes ago and went on a secret mission. Just as the police were arriving, I got a phone call from my friend, who conferenced in her son, who had his eyes on Jake. He was sitting on the edge of a stream in the woods, in our neighborhood, down beyond the playground.
None of us knew what to do. I didn't know if approaching him, would upset him more.
As the police arrived, two of them knew Jake and one did not. It's funny how everything we've ever told the police about approaching kids with Autism went out the window, I asked for the opposite. "Go find your ambassador and DON'T be nice!"
Well they didn't listen to me and minutes later they were walking calmly with him up the sidewalk, smiling. They stopped on the corner to talk and one of the officers who has become very close to us, walked him home. She stayed to make sure Jake was calm and wouldn't aggress toward me after she left, and was able to go back to her territory.
Jake and I just started crying. Emotionally drained, physically exhausted and completely spent. I didn't have any words to explain how badly this hurt to him and he didn't have any more words to apologize or promise not to do it again. Chris came home and we all managed to grunt, cry and communicate for about 2 hours.
Come to find out, not only did Jake sneak and take 3 Advil before school, he also snuck and took 16 Melatonin the night before.
He had been sick with the crud and still working through healing from his knee surgery... and fed up with not feeling like himself. So he thought taking more medicine would make him heal faster. We've also told him that he grows when he's sleeping, so 16 melatonin aught to heal up his knee quicker and cure that cold. Logical isn't it? (Remember, the melatonin was also on the night stand.)
We had no idea. Again the whispers: "how could you leave melatonin on the table?" "what kind of parent are you?" "how could you now realize?" "you've locked up all drugs and scissors and sharps for years, and why didn't you lock up these?"
I'm still shocked and exhausted emotionally from this event and it was two weeks ago. My new normal is the realization that Jake has the ability to actually run. I never thought he would. He also has the ability to take a ton of meds without realizing the end result. I never thought he would. How am I going to let him out of my sight again? I hadn't thought about this for months, as we were trying to allow him more independence.
So here we are back at the beginning. I dose out his meds and put them in a cup am, then again in the pm. We watch him swallow. He must take his fully charged phone with him everywhere, even into a public bathroom so I can track him and find him. I remember feeling this way when he was 3 and I couldn't take a shower... or go to the bathroom alone. I can't go back to locking him in the bathroom with me, but that feeling of my heart breaking and running wild in the woods will never leave.
I guess they call this post traumatic stress, right? We live at a new level of heightened awareness. For now, when he's out of my sight, I'm counting the seconds it takes him to go to the restroom. I'm tracking him on his phone or FaceTiming him. When there's quiet in the house, I'm looking for him. Hell, I've even FaceTimed him in the house!
When he asks to run and get the mail, I'm peeking out the window. I don't want to live like this, I want to trust him, but the fear of losing him overpowers all the rest.
Even if you think your kiddo would never sneak and take meds or run away, please never let your guard down. The teenager you knew yesterday is NOT the teenager you know today. I'm not saying stalk your kid (only I do that) but just be aware. Lock up the pills. Lock up the sharps. Put away anything that he/she could hurt themselves or you, with.
Yep it's hard. Yep it's hard to think of your kid this way. But trust me, it's even harder to imagine life without your heart.
March 2018
First, know that I'm writing this piece with full permission from Jake. I don't normally ask permission from anyone before I purge, but this time I asked him, my husband and my sister for advice. I guess I'm nervous and the feelings are still raw from our experience(s) a couple weeks ago.
I want to share this as a warning for everyone, that even if you think "oh my kid would never do that", all bets are off the table in the midst of puberty and autism.
It was a Friday. The day started for me with a phone call from the school nurse. "Do you know Jake took medicine you didn't know about?" My brain instantly raced through what medicine we kept unlocked. All meds are securely pad-locked inside a safe. "He says he took 3 Advil," the nurse continued.
I started walking around the house looking for the bottle. There it was, unlocked in my room. There was only one pill left. Crap, he sure did. It was on my night stand in our bedroom. The same place I keep the melatonin. (hold on to this for later).
I instantly felt like the worse parent on the planet. That whisper voice in my head now screaming full tilt, "you know you should have hidden them!", "why on earth would you leave them on your night stand?" and on and on and on. I quickly tried to think of excuses to relieve me from this guilt and came up empty. I sank into the couch and listened to the nurse. Thinking back to a conversation we recently had with Jake about how Michael Jackson and Tom Petty died, "too much of any medicine is dangerous", we told him.
The nurse and I did share a laugh at one point, she reported that while she was taking Jake's blood pressure, which is typically excellent, she mentioned calmly to Jake that she has to "tell your parents" about this. She watched his pressure skyrocket and nearly blast the cuff open. Poor thing... I guess we still have some power.
Before picking him up from school, I stopped in the local CVS to pick up a single serve pill carrier. Thinking that this would shock him enough, I wouldn't even need to speak. We never had one as he's been managing his 7-day med container independently for more than a year or more. Sure we have had little slips and took the pm meds in the am and vice versa, but never an intentional extra dosing.
He was slow to come out for pick up and when he arrived to the lobby, he was shaking and I was able to act like nothing ever happened. I was happy and calm, as I usually am at pick up time, and it threw him off his game. All the way home in the car, he kept leaning forward to see my facial expression. He reads my entire mood by the look on my lips. Straight-line mouth=he's in trouble. Corners turned down=mommy is sad/tired and needs a joke and classical music. Corners turned up=all is well in the world. So I had corners turned up all the way home. (I'd like to thank the Academy...)
I wanted him to bring it up first. He didn't. My silence was torture. As we rounded the corner into our neighborhood, the single-serv pill carrier flipped in my cup holder. He saw it and immediately asked, "what's that?" I explained calmly that, "it is a new pill holder so he'd be extra safe when taking medicine." Instantly, his eyes started darting left-right-left, his breathing became shallow and his skin flushed. "I DON'T NEED THIS. I DON'T WANT THIS!"
I answered calmly, "Daddy and I think you do, because you made a very dangerous mistake by taking extra medicine." As I turned into our driveway, Jake jumped out of the moving car and ran.
I fumbled to get the car in Park, jumped out behind him, screamed his name as I watched him disappear. Now my heart was racing. My eyes darting left-right-left, scanning the gray and drizzly landscape for my heart. Instantly, the trainings we've told police over and over and over again, started playing in my mind. "First thing is to always call the police. Don't waste a minute!"
Then the whisper voice: "my kid is the damn police ambassador, I can't call the police on him?" "What will they think?" "What if he really does something stupid?" Wait, he already did something stupid.
My shaking fingers found their way to 9-1-1 on my phone. When you're on the line with emergency services, you instantly forget how tall your kid is, what he looks like, what he's wearing, and everything is blank. The kind officer kept asking me questions and I know I answered more than one with, "It's Jake, your police ambassador, he trained you, you know him!" I surely sounded like that panicked, bitchy, out-of-control parent, but at that moment I was.
I died a thousand times per minute he was on the run... all 25 of them.
My heart was running wild in the woods, a vast state park that surrounds our property, that's lined by two pretty big state highways. In one minute, he could run to the highway and be gone. He's not in control when upset and cannot make sound decisions when he's upset. Unexpected consequences are life shattering.
I called Chris to come home, tears mixing with drizzle on my cheeks, but sweat stinging my eyes at the same time. He was in DC but made it home in record time. No, of course, he never broke the speed limit.
Next I texted Jake's "security detail" (the police he trains alongside) with simply a "9-1-1 Jake ran". The dispatcher told me to stay home and wait for the police to arrive. Clearly they don't know how fast Jake can run, or that it's virtually impossible to stop a parent from searching from her heart. Alone. On the run.
I tapped my dear neighbor friend to go look for Jake. I asked her to drive down to the playground and then the soccer field to look for him. At that time, her son also took a walk. He saw Jake dart away 10 minutes ago and went on a secret mission. Just as the police were arriving, I got a phone call from my friend, who conferenced in her son, who had his eyes on Jake. He was sitting on the edge of a stream in the woods, in our neighborhood, down beyond the playground.
None of us knew what to do. I didn't know if approaching him, would upset him more.
As the police arrived, two of them knew Jake and one did not. It's funny how everything we've ever told the police about approaching kids with Autism went out the window, I asked for the opposite. "Go find your ambassador and DON'T be nice!"
Well they didn't listen to me and minutes later they were walking calmly with him up the sidewalk, smiling. They stopped on the corner to talk and one of the officers who has become very close to us, walked him home. She stayed to make sure Jake was calm and wouldn't aggress toward me after she left, and was able to go back to her territory.
Jake and I just started crying. Emotionally drained, physically exhausted and completely spent. I didn't have any words to explain how badly this hurt to him and he didn't have any more words to apologize or promise not to do it again. Chris came home and we all managed to grunt, cry and communicate for about 2 hours.
Come to find out, not only did Jake sneak and take 3 Advil before school, he also snuck and took 16 Melatonin the night before.
He had been sick with the crud and still working through healing from his knee surgery... and fed up with not feeling like himself. So he thought taking more medicine would make him heal faster. We've also told him that he grows when he's sleeping, so 16 melatonin aught to heal up his knee quicker and cure that cold. Logical isn't it? (Remember, the melatonin was also on the night stand.)
We had no idea. Again the whispers: "how could you leave melatonin on the table?" "what kind of parent are you?" "how could you now realize?" "you've locked up all drugs and scissors and sharps for years, and why didn't you lock up these?"
I'm still shocked and exhausted emotionally from this event and it was two weeks ago. My new normal is the realization that Jake has the ability to actually run. I never thought he would. He also has the ability to take a ton of meds without realizing the end result. I never thought he would. How am I going to let him out of my sight again? I hadn't thought about this for months, as we were trying to allow him more independence.
So here we are back at the beginning. I dose out his meds and put them in a cup am, then again in the pm. We watch him swallow. He must take his fully charged phone with him everywhere, even into a public bathroom so I can track him and find him. I remember feeling this way when he was 3 and I couldn't take a shower... or go to the bathroom alone. I can't go back to locking him in the bathroom with me, but that feeling of my heart breaking and running wild in the woods will never leave.
I guess they call this post traumatic stress, right? We live at a new level of heightened awareness. For now, when he's out of my sight, I'm counting the seconds it takes him to go to the restroom. I'm tracking him on his phone or FaceTiming him. When there's quiet in the house, I'm looking for him. Hell, I've even FaceTimed him in the house!
When he asks to run and get the mail, I'm peeking out the window. I don't want to live like this, I want to trust him, but the fear of losing him overpowers all the rest.
Even if you think your kiddo would never sneak and take meds or run away, please never let your guard down. The teenager you knew yesterday is NOT the teenager you know today. I'm not saying stalk your kid (only I do that) but just be aware. Lock up the pills. Lock up the sharps. Put away anything that he/she could hurt themselves or you, with.
Yep it's hard. Yep it's hard to think of your kid this way. But trust me, it's even harder to imagine life without your heart.
Vacation Expectation
Wednesday, June 17, 2015
Aaaahhhhh summer vacation! The time of year when, like every other family on the planet, we need to get away and do a little travel and visiting friends. Not only is this change of scenery difficult for Jake, but it's a stark reminder of how much we actually do to make life tolerable and predictable for said kiddo with autism. The litany of accommodations (pack his favorite bed toys, favorite clothes, snacks, strategies, and buy his usual foods) we do without even noticing.
The day-in and day-out routine of school gets to be habitual and comfortable, so it only makes sense that our travel should be the same! (At least in Jake's mind). To that end, our annual trip to the midwest has now turned into a tour of favorite restaurants, activities and reliving memories of past trips. Memories that are predictable with expected outcomes.
Every time we are home, Culvers, Elias Deli, Krolls and a trip through Lambeau Field are a requirement. Not because Chris and I want to do all these things, but because they meet all the expectations in Jake's head. He knows that we can go to Culvers and get burgers, fries and great custard. He expects to go to Elias Deli in Madison and sit at the same table and order the same food every time. God forbid Krolls ever take away their little buttons that we push to bring a waitress to our table! And no trip to GB is complete without riding the glass elevators at Lambeau Field and dropping way too much money in the Packer gift store!
Any activity out of this "ordinary" and "expected" list for Jake needs to be prepped, explained and planned. He needs to know how many people will be at each event, who the people are, how old they are, what he's expected to do, if they are girls or boys, where he can take breaks, what time we will be leaving, and what words to say to us to signal a polite exit strategy. Even after we tell him all this information, his ability to cope is still a crap shoot.
A side trip to a water park (normally his favorite activity) was a challenge this trip because it was new, he wasn't expecting to deal with new friends, we didn't really prep him (show pictures on the internet, talk for weeks about it because he never met a water park he didn't like) and our attention was divided once there. Add to that, he's tired, hot and just wanting to be with us... no one else... just us.
When we get in these "good behavior stints" we (I) sometimes forget that the needs are still there. His ability to cope with changes and unmet expectations and surprises is diminished, when out of his usual routine. As Jake says, "things are just harder to deal with when we're on vacation." And I have to agree. We've noticed he's using all his energy to deal with so many more people and their expectations of behavior, that he's exhausted just being in his own skin. Almost every day is divided by a long nap in the middle, after one activity and before the next.
Is it up to us to lessen our expectations of him, since we are on the road? It's a hard question because we only expect acceptable and appropriate behavior... but even these are hard to come by when we are out of routine.
We cannot suddenly allow him to scream in restaurants and wildly run back/forth in public because he's not "ready" for what's ahead or something "unexpected" or "overwhelming" is happening. In this case, are our (or societal) expectations adding more stress to him? No matter how many chew sticks, fidget toys, brushing & lotion routines we do, we are still away from familiar and he's still holding on by the skin of his teeth.
Travel seems to require adjustments by everyone, but it's hard to know how much. Chris and I discuss this a lot, as letting him act silly once, can translate in his head, to acting silly every time. There's no room for a "well we're on vacation so let him do it" mentality because that can un-do months and years of practice and training. Then our behavior is judged by others! (slight grin)
I really hope one day he (we) will be able to relax enough to enjoy all of vacation and tolerate changes and unmet expectations. It's all a growing process I know, but "going with the flow" is a tough thing.
Wednesday, June 17, 2015
Aaaahhhhh summer vacation! The time of year when, like every other family on the planet, we need to get away and do a little travel and visiting friends. Not only is this change of scenery difficult for Jake, but it's a stark reminder of how much we actually do to make life tolerable and predictable for said kiddo with autism. The litany of accommodations (pack his favorite bed toys, favorite clothes, snacks, strategies, and buy his usual foods) we do without even noticing.
The day-in and day-out routine of school gets to be habitual and comfortable, so it only makes sense that our travel should be the same! (At least in Jake's mind). To that end, our annual trip to the midwest has now turned into a tour of favorite restaurants, activities and reliving memories of past trips. Memories that are predictable with expected outcomes.
Every time we are home, Culvers, Elias Deli, Krolls and a trip through Lambeau Field are a requirement. Not because Chris and I want to do all these things, but because they meet all the expectations in Jake's head. He knows that we can go to Culvers and get burgers, fries and great custard. He expects to go to Elias Deli in Madison and sit at the same table and order the same food every time. God forbid Krolls ever take away their little buttons that we push to bring a waitress to our table! And no trip to GB is complete without riding the glass elevators at Lambeau Field and dropping way too much money in the Packer gift store!
Any activity out of this "ordinary" and "expected" list for Jake needs to be prepped, explained and planned. He needs to know how many people will be at each event, who the people are, how old they are, what he's expected to do, if they are girls or boys, where he can take breaks, what time we will be leaving, and what words to say to us to signal a polite exit strategy. Even after we tell him all this information, his ability to cope is still a crap shoot.
A side trip to a water park (normally his favorite activity) was a challenge this trip because it was new, he wasn't expecting to deal with new friends, we didn't really prep him (show pictures on the internet, talk for weeks about it because he never met a water park he didn't like) and our attention was divided once there. Add to that, he's tired, hot and just wanting to be with us... no one else... just us.
When we get in these "good behavior stints" we (I) sometimes forget that the needs are still there. His ability to cope with changes and unmet expectations and surprises is diminished, when out of his usual routine. As Jake says, "things are just harder to deal with when we're on vacation." And I have to agree. We've noticed he's using all his energy to deal with so many more people and their expectations of behavior, that he's exhausted just being in his own skin. Almost every day is divided by a long nap in the middle, after one activity and before the next.
Is it up to us to lessen our expectations of him, since we are on the road? It's a hard question because we only expect acceptable and appropriate behavior... but even these are hard to come by when we are out of routine.
We cannot suddenly allow him to scream in restaurants and wildly run back/forth in public because he's not "ready" for what's ahead or something "unexpected" or "overwhelming" is happening. In this case, are our (or societal) expectations adding more stress to him? No matter how many chew sticks, fidget toys, brushing & lotion routines we do, we are still away from familiar and he's still holding on by the skin of his teeth.
Travel seems to require adjustments by everyone, but it's hard to know how much. Chris and I discuss this a lot, as letting him act silly once, can translate in his head, to acting silly every time. There's no room for a "well we're on vacation so let him do it" mentality because that can un-do months and years of practice and training. Then our behavior is judged by others! (slight grin)
I really hope one day he (we) will be able to relax enough to enjoy all of vacation and tolerate changes and unmet expectations. It's all a growing process I know, but "going with the flow" is a tough thing.
Sliding into the School Year
Monday, August 20, 2012
Clump, Clump, Clump. Boom, bah, boom, bah, "Aaaayyyyyaaaaa," drip, drip, drip, sigh, ooohhh, zip, zip zip.
We’ve crashed landed into the school year schedule even though the first day of school is 7 days away; we’re slipping into our regular routine and gearing up for a great 4th grade.
Beep, Beep, Beep 5 am! Jake came bashing through my door dressed in his exercise clothes, holding his Ipod and headphones. “Time to exercise mommy!!”
“aaaaauuuuurrrrrrmmmmppppphhhhh, I’m coming!”
Glow-stick in hand, shoes laced up, and we’re out the door in the pitch dark; 5:30am. As we navigate the sidewalks I hear Jake’s feet clip clomp in an even tempo with the music on his Ipod. After he listened to Hootie and the Blowfish “Time” about 4 times, I taught him how to shuffle the music. Whew.
African Groove, "Aaaayyyaaaa," now we’re talking, a rhythm to walk fast too. He surges ahead, jammin’ away and not even noticing my steady rhythm has me falling behind. He peers back in the blackness over his shoulder to spot my glow stick waving in my hand. He waits, unites and we walk side by side again.
The spider webs cross my face and neck as we walk between rain soaked trees. Still can’t see, it’s pitch black. So as I wave wildly in the air to wipe the webs away, I hit the branches of the trees. The leaves release the dew and rain on our heads, drip drip drip, and we giggle and squeal. Surely, I looked pretty funny.
As we share the laugh, a warm smooth hand reaches for mine in the darkness. My 9-year-old reaching for my hand makes me so happy. Nothing could be nicer. “I love my mommy!”
We approach the corner and no words are exchanged; just pointing as to not wake the neighbors. Though, if they’d listen closely they could probably hear the music blaring from his headphones… I was also able to enjoy his tunes and got sick of Hootie too.
I point one direction… he points the other… our eyes lock. He wants to go down past the playground where there are no lights and the morning fog clouds the pathway. Nope, I show him in sign language and he’s in my direction and we’re back in stride.
We’re getting closer to home now and the birds are waking up. He comments he can hear them chirping. The birds are startling and taking flight for their morning breakfast as we pass underneath. With each push off the branches, rain drops fall on our heads. Zip zip zip, we hurry.
Inside, wet shoes are piled by the door and cheerios are poured. Slurp, slurp, slurp the cereal down the hatch. “Can I have an apple and pizza too?”
“Sure!”
“We do have left over pizza, yay!”
The breakfast of champions disappears, pills are gulped, and Jake pulls out his homework folder… right on schedule 6:30am… the bus will pull up at 7am in a few short days!
Monday, August 20, 2012
Clump, Clump, Clump. Boom, bah, boom, bah, "Aaaayyyyyaaaaa," drip, drip, drip, sigh, ooohhh, zip, zip zip.
We’ve crashed landed into the school year schedule even though the first day of school is 7 days away; we’re slipping into our regular routine and gearing up for a great 4th grade.
Beep, Beep, Beep 5 am! Jake came bashing through my door dressed in his exercise clothes, holding his Ipod and headphones. “Time to exercise mommy!!”
“aaaaauuuuurrrrrrmmmmppppphhhhh, I’m coming!”
Glow-stick in hand, shoes laced up, and we’re out the door in the pitch dark; 5:30am. As we navigate the sidewalks I hear Jake’s feet clip clomp in an even tempo with the music on his Ipod. After he listened to Hootie and the Blowfish “Time” about 4 times, I taught him how to shuffle the music. Whew.
African Groove, "Aaaayyyaaaa," now we’re talking, a rhythm to walk fast too. He surges ahead, jammin’ away and not even noticing my steady rhythm has me falling behind. He peers back in the blackness over his shoulder to spot my glow stick waving in my hand. He waits, unites and we walk side by side again.
The spider webs cross my face and neck as we walk between rain soaked trees. Still can’t see, it’s pitch black. So as I wave wildly in the air to wipe the webs away, I hit the branches of the trees. The leaves release the dew and rain on our heads, drip drip drip, and we giggle and squeal. Surely, I looked pretty funny.
As we share the laugh, a warm smooth hand reaches for mine in the darkness. My 9-year-old reaching for my hand makes me so happy. Nothing could be nicer. “I love my mommy!”
We approach the corner and no words are exchanged; just pointing as to not wake the neighbors. Though, if they’d listen closely they could probably hear the music blaring from his headphones… I was also able to enjoy his tunes and got sick of Hootie too.
I point one direction… he points the other… our eyes lock. He wants to go down past the playground where there are no lights and the morning fog clouds the pathway. Nope, I show him in sign language and he’s in my direction and we’re back in stride.
We’re getting closer to home now and the birds are waking up. He comments he can hear them chirping. The birds are startling and taking flight for their morning breakfast as we pass underneath. With each push off the branches, rain drops fall on our heads. Zip zip zip, we hurry.
Inside, wet shoes are piled by the door and cheerios are poured. Slurp, slurp, slurp the cereal down the hatch. “Can I have an apple and pizza too?”
“Sure!”
“We do have left over pizza, yay!”
The breakfast of champions disappears, pills are gulped, and Jake pulls out his homework folder… right on schedule 6:30am… the bus will pull up at 7am in a few short days!
---------------------------------
“All In” Fall Out
3/20/2013
You know how sensitive these Super Hero creatures can be. The slightest noise, new place, different smell, or flashing light can cause them to either completely melt down or zone into their own stim/safe place for comfort.
That fact alone can make travel, change in routine and new situations extremely stressful. After our latest weekend trip, Jake needed a total release and trust me friends, it was not pretty. The biggest melt I’ve seen in a year’s time.
Since I like to write encouraging pieces and force myself to see the positive in all situations, this one was a toughy. It’s taken me three days to realize exactly how that major melt was a positive or growing experience. No I am not delusional at this time.
Follow me here.
This morning, it hit me. Jake wouldn’t have needed that total release unless he was ‘ALL IN’ to begin with. If he was zoning out, escaping into his iPad or isolating himself from our group he would have been coping with the overstimulation as we went along. But he was the exact opposite.
As we departed for NY, he took an active role in the car by helping me with song selection and navigation. He was reading signs as we passed them and asking questions about passing trucks and different looking license plates. No DVD’s (don’t even own a player), no iPad, no sleeping, just pure brain work and engaging conversation.
Upon arrival, we met our friends instantly and he ran to greet them at the door. Conversation was awkward but nearly constant and he was engaging with them every chance he could. We were all hungry and had to wait a while for food as well as our room. Big challenge there too… don’t withhold food. Ever.
We, Jake and I, were never alone. Usually he craves at least some downtime, but this trip he was seeking to be part of the group: following conversation, trying out boisterous laughs when we would laugh and eye contact with every one of our friends. Imagine what kind of effort that must have taken on his part… knowing how painful and confusing face-to-face contact can be and trying to read the expressions of new friends he just met.
Two restaurant visits included fancy table cloths and expectation of great behavior. He held it together both times, barely, and ate like a champ. Massive challenge yet he rose to it yet again.
A long ride through NYC traffic jams brought my driving stress to an almost palpable level. Surely he could see my white knuckles on the steering wheel, and “straight line mouth” as he listened to navigation directions and conversation about this mess of moving nowhere fast! He tends to feel the stress we don’t even realize to begin with, so by the time we arrived at our destination, everyone needed a release, myself included. But we went right to brunch. Sit. Eat. Be quiet and friendly.
So in a 72 hour trip he ate different food in many new places, visited two new NY apartments with lots of beautiful artwork he was not allowed to play with, spent every moment with me and 3 of my best friends, played in a really cold swimming pool, drove through tunnels (very exciting), visited train stations (but never got on), took lots of pictures and had to behave!
I’d say bring on the massive meltdown! This time it was a sure sign of success!
I’ll take it!
You still with me?
No I'm not crazy...yet.
“All In” Fall Out
3/20/2013
You know how sensitive these Super Hero creatures can be. The slightest noise, new place, different smell, or flashing light can cause them to either completely melt down or zone into their own stim/safe place for comfort.
That fact alone can make travel, change in routine and new situations extremely stressful. After our latest weekend trip, Jake needed a total release and trust me friends, it was not pretty. The biggest melt I’ve seen in a year’s time.
Since I like to write encouraging pieces and force myself to see the positive in all situations, this one was a toughy. It’s taken me three days to realize exactly how that major melt was a positive or growing experience. No I am not delusional at this time.
Follow me here.
This morning, it hit me. Jake wouldn’t have needed that total release unless he was ‘ALL IN’ to begin with. If he was zoning out, escaping into his iPad or isolating himself from our group he would have been coping with the overstimulation as we went along. But he was the exact opposite.
As we departed for NY, he took an active role in the car by helping me with song selection and navigation. He was reading signs as we passed them and asking questions about passing trucks and different looking license plates. No DVD’s (don’t even own a player), no iPad, no sleeping, just pure brain work and engaging conversation.
Upon arrival, we met our friends instantly and he ran to greet them at the door. Conversation was awkward but nearly constant and he was engaging with them every chance he could. We were all hungry and had to wait a while for food as well as our room. Big challenge there too… don’t withhold food. Ever.
We, Jake and I, were never alone. Usually he craves at least some downtime, but this trip he was seeking to be part of the group: following conversation, trying out boisterous laughs when we would laugh and eye contact with every one of our friends. Imagine what kind of effort that must have taken on his part… knowing how painful and confusing face-to-face contact can be and trying to read the expressions of new friends he just met.
Two restaurant visits included fancy table cloths and expectation of great behavior. He held it together both times, barely, and ate like a champ. Massive challenge yet he rose to it yet again.
A long ride through NYC traffic jams brought my driving stress to an almost palpable level. Surely he could see my white knuckles on the steering wheel, and “straight line mouth” as he listened to navigation directions and conversation about this mess of moving nowhere fast! He tends to feel the stress we don’t even realize to begin with, so by the time we arrived at our destination, everyone needed a release, myself included. But we went right to brunch. Sit. Eat. Be quiet and friendly.
So in a 72 hour trip he ate different food in many new places, visited two new NY apartments with lots of beautiful artwork he was not allowed to play with, spent every moment with me and 3 of my best friends, played in a really cold swimming pool, drove through tunnels (very exciting), visited train stations (but never got on), took lots of pictures and had to behave!
I’d say bring on the massive meltdown! This time it was a sure sign of success!
I’ll take it!
You still with me?
No I'm not crazy...yet.
---------------------------------------------
Time Change Tango
November 3, 2012
Here we are again. That night, every year when I sit here, trying to convince myself that my child cannot possibly wake up any earlier than he does now.
The night I try to decide if it’s better to turn the clocks back right now and enjoy that extra hour, or do it when I actually go to bed to get that extra hour while I’m sleeping.
The night when I have to use my dark-of-the-night-sneaky-stealthy-mommy-skills!
OK so it’s not totally honest, but I’ve tried several techniques; explaining, changing his sleep time leading up to the change, just putting him down early, books, stories and pictures. The confusing change builds so much anxiety for our Super Hero, he just cannot get himself to sleep. The questions are endless and the more I don’t have an acceptable answer, the more angry/frustrated he gets.
So every time the clocks need changing, the only thing that works is lying!
Tonight is the night I dance the Time-Change Tango.
It starts at Jake’s bed time. As I’m setting his clock/radio to the sleep timer on our favorite classical music station, I “accidentally” hit the minute button to go backwards. But there’s a trick to this.
If it goes back too far he will not go to sleep… if it’s not bedtime, why is he in bed?
So I slide it a little, (15 mins will help me later) draw his attention to the music on the radio somehow.
“Oh do you hear the trombones? Oh that sounds like mommy’s flute!”
Then the stalling comes. For prayer time, I strategically take a knee right at the edge of his bed. So my thick skull blocks his view of the clock. Remember if he sees it now, with the time earlier, he’ll wage his bedtime war.
“We have time for books! We can do a rrrreeeeaaaallllyyyy long book, like a Veggie Tale book because it’s so early. Maybe we could read two books even because we have LOTS of time before sleep time! Veggie tales, (now he’s out of bed looking at the bookshelf) and an Amelia Bedilia….”
Oh heck no.
I shudder at the thought hold firm in my position a sly smile on my face. The closeness is making him ‘itchy’ but I continue to kneel right next to his face, in his bubble, nearly nose to nose. To tolerate and not offend he rolls to one side, away from me. Success! He can’t see the clock.
“Thank God for mommy, daddy, mikey, fitness class, my awesome school, my great quiet teachers, ice cream, hot dogs, and bacon. Amen.”
By the time he’s finished, I’m now standing next to the bed holding his blanket up, half-way preparing to tuck him in like a burrito and half-way planning my blocking strategy at the same time. He rolls back over to look at me… “I love my mommy!!!”
Every piece of me screams 'hug him right now' but instead I bury him.
“OK buddy, time for sleep… I love you too… You are my heart… here comes the blanket!” and over his head it goes. The tighter I tuck him in all around the less chance of him rolling over to see the clock is suddenly a 15 minutes earlier than when we finished his shows and started the bed time routine.
He’s down for the count.
Whew.
I sit to plan my next steps.
Five minutes later, he’s up.
(Please don’t look at the clock, please don’t look at the clock)
“Mommy, you forgot to tell me what happy things I can dream about!” I hear coming from the top of the stairs.
Crud. Not only is he out of his strategically placed blankets, he’s walking down the hall, wide awake!
“How ‘bout your fun time with Mikey and fitness class today and that giant juicy Five Guys burger you inhaled for lunch.?”
“Oh that’s a great idea! Thanks mom, I love you, goodnight..”
“Goodnight”
He's back in bed.
Door opens again – 30 minutes later…
“Mommy, I need a melatonin, I’m not finding my dream.”
Sigh.
Wait, this could be an opportunity!
I run up get him a melatonin and fill his cup of water. I’m out of the bathroom so fast; I have time to set his clock back even more.
He enters the room just as I’m getting it 15 more minutes back, (30mins total now)… “Mom what are you doing to my music?”
“Oh just resetting it so you can listen to this orchestra a little longer!”
Yes that’s a total-bold-faced-blatant lie.
“So I can listen until 7:00?”
Heart pounding again. I’m busted!
“No honey, just 6! Right now it’s 5:30!”
“It is? I thought it was later.”
“Nope. Goodnight buddy.”
“I want you to tell me the entire day tomorrow starting at 5am. What are we doing when I wake up?”
So I go through the list thinking, if he’s up at 5, that’s really 6, way better than 4, and thankfully it’s not 3 which would really be 4!
“OK mom, I’m going to find my dream now.”
“Great, good night.”
So now I only have 30 more minutes to go on the clock. My super-duper-sneaky-stealth-skills are gonna have to be good tonight. He’s not quite as tired as usual because he fell asleep this afternoon.
Now I wait.
It has to be totally dark.
He has to be sound asleep.
It helps if his head is covered.
His super powered ears hear everything!
I need to turn the door knob without the two usual clicks it makes.
Opening the door needs to be silent so it doesn’t drag on the haphazardly-placed Santa Claus doormat beneath it. It always makes a dragging noise.
I need to be able to hold my breath for 1 minute while feeling my heartbeat in my throat.
Then I go in.
Stepping without knee-creaks, ankle cracks, or stomach growls. Blinking silently, dodging toys on the floor and stealthily finding the right buttons to push without bumping that nearby “sleep” button which would blare his orchestra music again.
Wait.
Breathe.
I’ve got 30 minutes to subtract from the time in 30 seconds.
Hold on.
I’m not ready.
Wine first.
Time Change Tango
November 3, 2012
Here we are again. That night, every year when I sit here, trying to convince myself that my child cannot possibly wake up any earlier than he does now.
The night I try to decide if it’s better to turn the clocks back right now and enjoy that extra hour, or do it when I actually go to bed to get that extra hour while I’m sleeping.
The night when I have to use my dark-of-the-night-sneaky-stealthy-mommy-skills!
OK so it’s not totally honest, but I’ve tried several techniques; explaining, changing his sleep time leading up to the change, just putting him down early, books, stories and pictures. The confusing change builds so much anxiety for our Super Hero, he just cannot get himself to sleep. The questions are endless and the more I don’t have an acceptable answer, the more angry/frustrated he gets.
So every time the clocks need changing, the only thing that works is lying!
Tonight is the night I dance the Time-Change Tango.
It starts at Jake’s bed time. As I’m setting his clock/radio to the sleep timer on our favorite classical music station, I “accidentally” hit the minute button to go backwards. But there’s a trick to this.
If it goes back too far he will not go to sleep… if it’s not bedtime, why is he in bed?
So I slide it a little, (15 mins will help me later) draw his attention to the music on the radio somehow.
“Oh do you hear the trombones? Oh that sounds like mommy’s flute!”
Then the stalling comes. For prayer time, I strategically take a knee right at the edge of his bed. So my thick skull blocks his view of the clock. Remember if he sees it now, with the time earlier, he’ll wage his bedtime war.
“We have time for books! We can do a rrrreeeeaaaallllyyyy long book, like a Veggie Tale book because it’s so early. Maybe we could read two books even because we have LOTS of time before sleep time! Veggie tales, (now he’s out of bed looking at the bookshelf) and an Amelia Bedilia….”
Oh heck no.
I shudder at the thought hold firm in my position a sly smile on my face. The closeness is making him ‘itchy’ but I continue to kneel right next to his face, in his bubble, nearly nose to nose. To tolerate and not offend he rolls to one side, away from me. Success! He can’t see the clock.
“Thank God for mommy, daddy, mikey, fitness class, my awesome school, my great quiet teachers, ice cream, hot dogs, and bacon. Amen.”
By the time he’s finished, I’m now standing next to the bed holding his blanket up, half-way preparing to tuck him in like a burrito and half-way planning my blocking strategy at the same time. He rolls back over to look at me… “I love my mommy!!!”
Every piece of me screams 'hug him right now' but instead I bury him.
“OK buddy, time for sleep… I love you too… You are my heart… here comes the blanket!” and over his head it goes. The tighter I tuck him in all around the less chance of him rolling over to see the clock is suddenly a 15 minutes earlier than when we finished his shows and started the bed time routine.
He’s down for the count.
Whew.
I sit to plan my next steps.
Five minutes later, he’s up.
(Please don’t look at the clock, please don’t look at the clock)
“Mommy, you forgot to tell me what happy things I can dream about!” I hear coming from the top of the stairs.
Crud. Not only is he out of his strategically placed blankets, he’s walking down the hall, wide awake!
“How ‘bout your fun time with Mikey and fitness class today and that giant juicy Five Guys burger you inhaled for lunch.?”
“Oh that’s a great idea! Thanks mom, I love you, goodnight..”
“Goodnight”
He's back in bed.
Door opens again – 30 minutes later…
“Mommy, I need a melatonin, I’m not finding my dream.”
Sigh.
Wait, this could be an opportunity!
I run up get him a melatonin and fill his cup of water. I’m out of the bathroom so fast; I have time to set his clock back even more.
He enters the room just as I’m getting it 15 more minutes back, (30mins total now)… “Mom what are you doing to my music?”
“Oh just resetting it so you can listen to this orchestra a little longer!”
Yes that’s a total-bold-faced-blatant lie.
“So I can listen until 7:00?”
Heart pounding again. I’m busted!
“No honey, just 6! Right now it’s 5:30!”
“It is? I thought it was later.”
“Nope. Goodnight buddy.”
“I want you to tell me the entire day tomorrow starting at 5am. What are we doing when I wake up?”
So I go through the list thinking, if he’s up at 5, that’s really 6, way better than 4, and thankfully it’s not 3 which would really be 4!
“OK mom, I’m going to find my dream now.”
“Great, good night.”
So now I only have 30 more minutes to go on the clock. My super-duper-sneaky-stealth-skills are gonna have to be good tonight. He’s not quite as tired as usual because he fell asleep this afternoon.
Now I wait.
It has to be totally dark.
He has to be sound asleep.
It helps if his head is covered.
His super powered ears hear everything!
I need to turn the door knob without the two usual clicks it makes.
Opening the door needs to be silent so it doesn’t drag on the haphazardly-placed Santa Claus doormat beneath it. It always makes a dragging noise.
I need to be able to hold my breath for 1 minute while feeling my heartbeat in my throat.
Then I go in.
Stepping without knee-creaks, ankle cracks, or stomach growls. Blinking silently, dodging toys on the floor and stealthily finding the right buttons to push without bumping that nearby “sleep” button which would blare his orchestra music again.
Wait.
Breathe.
I’ve got 30 minutes to subtract from the time in 30 seconds.
Hold on.
I’m not ready.
Wine first.
-----------------------------------------------
I See the Floor. Move. Under My Feet
April 1, 2011
“I’m done with the brown floor, can we get the old white one back?"
And with that, we pat ourselves on the back for royally messing with Jake’s world, again. Although, it honestly wasn’t premeditated or intentional this time, more spur of the moment messing!
For years we’ve been tossing around the idea of replacing our faded, yellowed, kitchen linoleum floor with tile or hardwood. The need became necessity shortly after Jake spun his frying pan lid directly into the floor boards about 3 years ago leaving a giant hole in the middle of the kitchen. We had no idea the cost or amount of time it would take to do this, but after seeing one too many ‘Empire… Today’ commercials, we pulled trigger. Free in home estimates, next day installation, and voila you have an entirely new home.
The salesman came on the 30th of the month and quoted us a price way out of our range. As he saw our eyes bulge out of our heads, he offered to ‘call his boss and see if he can give us a deal.’ Yea… rrriiiggghhhttt.
“If you install by the end of the month, as in tomorrow, we’ll knock the price down considerably (like 2k considerably).”
Deal. Done.
When we signed all the contract papers, I admit to skimming over most of the fine print, but I swear we didn’t see the list of accessories needed to help Super Heroes adjust to this giant change to our ‘safe place’, nor did they cross my floor-focused mind. {Wait for it}
So here we are with hardwood floors being installed on the end of the school marking period. Which means Jake will be home ALL DAY with the hammering, pounding, and sawing. Did I say hammering and pounding, LOUD hammering and VERY LOUD pounding. {Keep waiting}
We prepped Jake in the little bit of time that we had for this approaching life change. “Jake, pretty soon the brown floor in the foyer was going to be in the living room and the kitchen.”
“All brown, like that (yay pointing to foyer) and all the way around?” Yes sir, he’s got it and seemed okay with it all.
The morning was spent out of the house at the doctors, but when we came home reality set in for Super Hero: Mr. Anxious. Jake started blurting out questions to the three guys responsible for this rebuild: “Are you almost done?”, “When are you going home?”, “What ARE you doing to that?” "Are you sleeping in the spare bedroom?" All pointless, only one of them spoke broken English. Maximum frustration overload reached.
I was thankfully able to redirect my trembling tormentor to his first treat of this day: hanging out on the super-snuggly mommy bed playing IPod. (For the record, I will never refuse snuggling with my Super Hero).
Thank goodness for friends Di and Gi who came to take Jake out for his second super treat: yogurt. We both appreciated the quiet time out of the house and he enjoyed pumping gas, eating his favorite treat and watching the roof come off Di’s car! She proudly reported spontaneous hugs and "I'm so happy's" from Jakeman himself.
When they returned, Jake was ready for bed, stressed, stimulated and searching for sanity. Thankfully, the obnoxious air compressor used to power some of tools was finally shut down and the men were cleaning up. Inspector Jake took one last trip around, taking snap shots of every detail of the new floor for storage in his head.
“Good night guys, good work,” Jake said to our destruction/construction workers. They chuckled and waved.
Fast Forward 10 hours.
Now it’s 4am and Jake is standing over my bed, digging for me in the blankets before I hear his best whisper/blaring voice, “Mommy, mommy, are the guys still downstairs? Is the floor all brown? Can I go walk on the brown floor?”
“No. Yes. GET OUT OF HERE!” I say in my best, barely shrieking ‘calm mommy voice’!
Minutes later: “I can’t run with Sam! It’s all slippery!!” Jake yells, nearly hysterical.
“We need rugs so I can run super-fast with daddy!” panting.
“Sammy can’t run either; I don’t like this new floor!”
I’m all cuddled in bed thinking, really is that it? A few whiny questions? No meltdown. No more panic. No extra meds needed?
NOT!
CRAP!
I force myself out of bed and stumble down the stairs, barely dressed. Yes stumble, my back is nearly in spasm from moving furniture and dusting ½ inch of dirt from every inch of our house. I enter the living room, which looks freakin’ awesome I must add, and there’s Jake hiding under the blanket playing IPod on the couch, exactly as I find him every morning.
Except this morning, I'm greeted with angry Jake.
“I’ll eat breakfast, but I’m not going to walk on the brown floor,” I hear from under the blanket.
“Oh really? How are you planning to get to the table where your waffle is?”
“Ummmm take the mommy train.”
“I cannot carry you. You’re 90 lbs. Ggggggrrrrr get to the table before your waffle is cold.”
Thunk, thunk, thunk, I look up to see Jake trying to bait Sam into running ‘the laps’ around the house on his way to the table. Soon, he falls to pieces, nearly crying because Sam won’t/can’t run on the new slippery floor.
“Is the floor going to be slippery after 100 years? Can we get a new one then?”
I’m thinking, OMG are we going to hear this every day? The same questions over and over are likely unless we find a fix, and fast! {Here it is}
Contract fine print: If you have a Super Hero living with new floors you must ALSO purchase:
1) Slippers like mommy’s crocs that will help him stick to the floor and run fast.
2) Something for Sammy’s feet so he doesn’t slip either.
3) The stupid little decorations that go into the crocs.
4) Rugs to ‘cover all the brown parts of the floor’ so he can run + the slip resistant thingy.
5) Duct tape to put on the crocs just “in case they don’t work so well.”
6) A mop to clean the floor after ‘Jake spills another entire glass of apple juice.’
One trip to Hallmark for crocs and decorations: check.
One trip to Home Depot for an area rug: check, but I hate it, even standing rolled up in the corner.
One roll of tape from Home Depot: check, but hidden currently.
One new mop: check.
Tomorrow is another day with our Super Hero, the brown floor, no rug, cool crocs, slipping Sam and our tax return already spent!
Voila! I’m more exhausted than if I installed the darn floor myself. Just another day in the life of a Super Hero.
I See the Floor. Move. Under My Feet
April 1, 2011
“I’m done with the brown floor, can we get the old white one back?"
And with that, we pat ourselves on the back for royally messing with Jake’s world, again. Although, it honestly wasn’t premeditated or intentional this time, more spur of the moment messing!
For years we’ve been tossing around the idea of replacing our faded, yellowed, kitchen linoleum floor with tile or hardwood. The need became necessity shortly after Jake spun his frying pan lid directly into the floor boards about 3 years ago leaving a giant hole in the middle of the kitchen. We had no idea the cost or amount of time it would take to do this, but after seeing one too many ‘Empire… Today’ commercials, we pulled trigger. Free in home estimates, next day installation, and voila you have an entirely new home.
The salesman came on the 30th of the month and quoted us a price way out of our range. As he saw our eyes bulge out of our heads, he offered to ‘call his boss and see if he can give us a deal.’ Yea… rrriiiggghhhttt.
“If you install by the end of the month, as in tomorrow, we’ll knock the price down considerably (like 2k considerably).”
Deal. Done.
When we signed all the contract papers, I admit to skimming over most of the fine print, but I swear we didn’t see the list of accessories needed to help Super Heroes adjust to this giant change to our ‘safe place’, nor did they cross my floor-focused mind. {Wait for it}
So here we are with hardwood floors being installed on the end of the school marking period. Which means Jake will be home ALL DAY with the hammering, pounding, and sawing. Did I say hammering and pounding, LOUD hammering and VERY LOUD pounding. {Keep waiting}
We prepped Jake in the little bit of time that we had for this approaching life change. “Jake, pretty soon the brown floor in the foyer was going to be in the living room and the kitchen.”
“All brown, like that (yay pointing to foyer) and all the way around?” Yes sir, he’s got it and seemed okay with it all.
The morning was spent out of the house at the doctors, but when we came home reality set in for Super Hero: Mr. Anxious. Jake started blurting out questions to the three guys responsible for this rebuild: “Are you almost done?”, “When are you going home?”, “What ARE you doing to that?” "Are you sleeping in the spare bedroom?" All pointless, only one of them spoke broken English. Maximum frustration overload reached.
I was thankfully able to redirect my trembling tormentor to his first treat of this day: hanging out on the super-snuggly mommy bed playing IPod. (For the record, I will never refuse snuggling with my Super Hero).
Thank goodness for friends Di and Gi who came to take Jake out for his second super treat: yogurt. We both appreciated the quiet time out of the house and he enjoyed pumping gas, eating his favorite treat and watching the roof come off Di’s car! She proudly reported spontaneous hugs and "I'm so happy's" from Jakeman himself.
When they returned, Jake was ready for bed, stressed, stimulated and searching for sanity. Thankfully, the obnoxious air compressor used to power some of tools was finally shut down and the men were cleaning up. Inspector Jake took one last trip around, taking snap shots of every detail of the new floor for storage in his head.
“Good night guys, good work,” Jake said to our destruction/construction workers. They chuckled and waved.
Fast Forward 10 hours.
Now it’s 4am and Jake is standing over my bed, digging for me in the blankets before I hear his best whisper/blaring voice, “Mommy, mommy, are the guys still downstairs? Is the floor all brown? Can I go walk on the brown floor?”
“No. Yes. GET OUT OF HERE!” I say in my best, barely shrieking ‘calm mommy voice’!
Minutes later: “I can’t run with Sam! It’s all slippery!!” Jake yells, nearly hysterical.
“We need rugs so I can run super-fast with daddy!” panting.
“Sammy can’t run either; I don’t like this new floor!”
I’m all cuddled in bed thinking, really is that it? A few whiny questions? No meltdown. No more panic. No extra meds needed?
NOT!
CRAP!
I force myself out of bed and stumble down the stairs, barely dressed. Yes stumble, my back is nearly in spasm from moving furniture and dusting ½ inch of dirt from every inch of our house. I enter the living room, which looks freakin’ awesome I must add, and there’s Jake hiding under the blanket playing IPod on the couch, exactly as I find him every morning.
Except this morning, I'm greeted with angry Jake.
“I’ll eat breakfast, but I’m not going to walk on the brown floor,” I hear from under the blanket.
“Oh really? How are you planning to get to the table where your waffle is?”
“Ummmm take the mommy train.”
“I cannot carry you. You’re 90 lbs. Ggggggrrrrr get to the table before your waffle is cold.”
Thunk, thunk, thunk, I look up to see Jake trying to bait Sam into running ‘the laps’ around the house on his way to the table. Soon, he falls to pieces, nearly crying because Sam won’t/can’t run on the new slippery floor.
“Is the floor going to be slippery after 100 years? Can we get a new one then?”
I’m thinking, OMG are we going to hear this every day? The same questions over and over are likely unless we find a fix, and fast! {Here it is}
Contract fine print: If you have a Super Hero living with new floors you must ALSO purchase:
1) Slippers like mommy’s crocs that will help him stick to the floor and run fast.
2) Something for Sammy’s feet so he doesn’t slip either.
3) The stupid little decorations that go into the crocs.
4) Rugs to ‘cover all the brown parts of the floor’ so he can run + the slip resistant thingy.
5) Duct tape to put on the crocs just “in case they don’t work so well.”
6) A mop to clean the floor after ‘Jake spills another entire glass of apple juice.’
One trip to Hallmark for crocs and decorations: check.
One trip to Home Depot for an area rug: check, but I hate it, even standing rolled up in the corner.
One roll of tape from Home Depot: check, but hidden currently.
One new mop: check.
Tomorrow is another day with our Super Hero, the brown floor, no rug, cool crocs, slipping Sam and our tax return already spent!
Voila! I’m more exhausted than if I installed the darn floor myself. Just another day in the life of a Super Hero.
------------------------------------------
Disaster-Ready!
August 28, 2011
It’s never easy planning and preparing for an approaching natural disaster. How do you inventory your life and sort through memories you want to save and memories you can live without if a hurricane, earthquake or tornado threatens to rip your lives apart. Hiding valuables in heavy appliances is a trick I learned living in the south – but how many photos can you cram into a dishwasher?
Planning to live without electricity is difficult at best given our ‘spoiled’ and fortunate lives these days, but explaining it to a Super Hero is exhausting, draining and complex. Say just enough, and not too much. When word of impending Hurricane Irene spread, my role in life changed from parent to preventer to predictor of the future.
It all started with me telling Jake very casually we may or may not attend an outdoor party this weekend because of the weather. A big rain storm was coming and it’s no fun playing outside in the rain. Then the barrage of questions started oozing from my Super Hero’s churning brain. In rapid-fire succession:
Are we going to lose power?
What are we going to eat?
Is there going to be lightening, thunder, and earth shaking (referencing earth quake 2 days prior)?
Do I get to sleep with mommy?
Is my fan going to work?
Is Sam (dog) going to cry?
Can I eat ice cream?
Will I have my first day of school?
As you can see, quelling this level of anxiety requires incredible amounts of planning, patience, predicting and good guessing.
We’ve done it before, it’s not our first hurricane, but it’s our first when Jake can really understand consequences of losing electricity.
Well answering we ‘might’ lost power to his first question does nothing but escalate anxiety. So I go with Yes, we’ll probably lose power.
Let’s go to the store and get some food to eat that doesn’t need to be cooked.
Yes, there will likely be lightening and loud noises, but I hope the earth doesn’t shake the house.
No your fan will not work.
Sam will be very scared.
Yes, if we lose power ice cream we’ll have an ice cream party with your friends and eat it all up.
I don’t know if you’ll have your first day of school. This is a killer, since he craves the routine and predictability of school days.
Ka-bam!
While Irene was just a category I storm when she came into our area of the eastern Seaboard, she lived true to my words. I got so lucky. We lost power for a spell, thankfully in the middle of the night. Jake jumped up trembling, screaming and landed in my bed for a short time. Once calmed, he went back to his room, glo-stick in hand, battery back-up in his sound machine and fell right back to sleep. Meanwhile, I lay there listening to our house creek and moan with every gust of wind while wildly texting from my bed at 3am. By the time Jake woke up, the power was restored, his clock was reset before panic set in and IPod was charged and ready for gaming.
Breakfast consisted of all the food I prepared the day before, while the stove still worked. Some cooked turkey sausages he could eat cold, hard boiled eggs and fruit. He turned down cold PopTarts (which I never buy) because the crust does not break off evenly. Requests came early for that ice cream party though, like 9am early, but we had power and the frozen goodness was still solid.
Planning is half my battle when storms turn our way. I wash all the clothes and put it away where it belongs to prevent stress of searching for socks and underwear in the heaping laundry baskets in the dark. All bedding is washed and on standby in case of an accident. Flashlights are all stocked with brand new batteries and glo-sticks are always in supply to serve as night lights. All pitchers are filled with water and placed on the cupboard so we don’t have to keep opening the fridge for a drink. All food in the fridge is placed near the front edge of shelves so we can open, grab and close. (OK I'm anal) Two containers of cooked pasta, turkey sausage, hard-boiled eggs, cleaned carrots and celery stand ready. (really anal) Buckets of ice wait ready in the garage coolers and all IPods are charged up. We have this cool adapter thingy for the car too which will allow me to charge anything from our car battery.
Meds are cut and filled for each day so I don’t add to my own stress level trying to slice pills in the dark, my beer is the first thing in the coolers, followed by meat and milk! (but I'm not crazy)
So this weekend when Irene decided to strike, we were ready. Saturday we played outside all morning to burn some energy. Once inside, Jake alternated working on his computer with trampoline jumping breaks, flashcards, playing IPod and dashing outside every time the rain let up for a bike/scooter ride up and down the street. We logged 4 miles in 3 hours for the record.
I’m physically, emotionally and thoroughly exhausted. We survived the storm. Chris made it home safely. No panic attacks, besides Sam. I prepped, planned and persevered; now I’m pooped. Good night.
School starts tomorrow!!!
Disaster-Ready!
August 28, 2011
It’s never easy planning and preparing for an approaching natural disaster. How do you inventory your life and sort through memories you want to save and memories you can live without if a hurricane, earthquake or tornado threatens to rip your lives apart. Hiding valuables in heavy appliances is a trick I learned living in the south – but how many photos can you cram into a dishwasher?
Planning to live without electricity is difficult at best given our ‘spoiled’ and fortunate lives these days, but explaining it to a Super Hero is exhausting, draining and complex. Say just enough, and not too much. When word of impending Hurricane Irene spread, my role in life changed from parent to preventer to predictor of the future.
It all started with me telling Jake very casually we may or may not attend an outdoor party this weekend because of the weather. A big rain storm was coming and it’s no fun playing outside in the rain. Then the barrage of questions started oozing from my Super Hero’s churning brain. In rapid-fire succession:
Are we going to lose power?
What are we going to eat?
Is there going to be lightening, thunder, and earth shaking (referencing earth quake 2 days prior)?
Do I get to sleep with mommy?
Is my fan going to work?
Is Sam (dog) going to cry?
Can I eat ice cream?
Will I have my first day of school?
As you can see, quelling this level of anxiety requires incredible amounts of planning, patience, predicting and good guessing.
We’ve done it before, it’s not our first hurricane, but it’s our first when Jake can really understand consequences of losing electricity.
Well answering we ‘might’ lost power to his first question does nothing but escalate anxiety. So I go with Yes, we’ll probably lose power.
Let’s go to the store and get some food to eat that doesn’t need to be cooked.
Yes, there will likely be lightening and loud noises, but I hope the earth doesn’t shake the house.
No your fan will not work.
Sam will be very scared.
Yes, if we lose power ice cream we’ll have an ice cream party with your friends and eat it all up.
I don’t know if you’ll have your first day of school. This is a killer, since he craves the routine and predictability of school days.
Ka-bam!
While Irene was just a category I storm when she came into our area of the eastern Seaboard, she lived true to my words. I got so lucky. We lost power for a spell, thankfully in the middle of the night. Jake jumped up trembling, screaming and landed in my bed for a short time. Once calmed, he went back to his room, glo-stick in hand, battery back-up in his sound machine and fell right back to sleep. Meanwhile, I lay there listening to our house creek and moan with every gust of wind while wildly texting from my bed at 3am. By the time Jake woke up, the power was restored, his clock was reset before panic set in and IPod was charged and ready for gaming.
Breakfast consisted of all the food I prepared the day before, while the stove still worked. Some cooked turkey sausages he could eat cold, hard boiled eggs and fruit. He turned down cold PopTarts (which I never buy) because the crust does not break off evenly. Requests came early for that ice cream party though, like 9am early, but we had power and the frozen goodness was still solid.
Planning is half my battle when storms turn our way. I wash all the clothes and put it away where it belongs to prevent stress of searching for socks and underwear in the heaping laundry baskets in the dark. All bedding is washed and on standby in case of an accident. Flashlights are all stocked with brand new batteries and glo-sticks are always in supply to serve as night lights. All pitchers are filled with water and placed on the cupboard so we don’t have to keep opening the fridge for a drink. All food in the fridge is placed near the front edge of shelves so we can open, grab and close. (OK I'm anal) Two containers of cooked pasta, turkey sausage, hard-boiled eggs, cleaned carrots and celery stand ready. (really anal) Buckets of ice wait ready in the garage coolers and all IPods are charged up. We have this cool adapter thingy for the car too which will allow me to charge anything from our car battery.
Meds are cut and filled for each day so I don’t add to my own stress level trying to slice pills in the dark, my beer is the first thing in the coolers, followed by meat and milk! (but I'm not crazy)
So this weekend when Irene decided to strike, we were ready. Saturday we played outside all morning to burn some energy. Once inside, Jake alternated working on his computer with trampoline jumping breaks, flashcards, playing IPod and dashing outside every time the rain let up for a bike/scooter ride up and down the street. We logged 4 miles in 3 hours for the record.
I’m physically, emotionally and thoroughly exhausted. We survived the storm. Chris made it home safely. No panic attacks, besides Sam. I prepped, planned and persevered; now I’m pooped. Good night.
School starts tomorrow!!!
------------------------------------------
Super Powered Vacation
June 30, 2011
When you vacation with Autism, you plan and prepare for the unexpected while expecting catastrophe.
When you vacation with Autism, smoke alarms, elevator beeps and crooked wall hangings become painfully obvious.
When you vacation with Autism, keeping routine becomes less of a ‘good idea’ and more of a necessity.
When you vacation with Autism, you hold your breath a million times a day, many times without even realizing it until you get to finally exhale.
When you vacation with Autism, watching people watching your every move spurs sadness and frustration.
When you vacation with Autism, tears flow as you see your child bond, joke and connect with distant family/friends we visit once a year.
When you vacation with Autism, scouting parking lots and open fields for meltdown compatibility happens at each destination.
When you vacation with Autism, perfect strangers share their own stories of childhood struggles.
When you vacation with Autism, staying seated in new restaurants quickly becomes an Olympic feat.
When you vacation with Autism, you earn much respect and sympathy from family members who don’t get to experience Super Powers every day.
When you vacation with Autism, flight attendants, pilots and crew members either love or hate you. This trip, they loved us, and we loved them!
When you vacation with Autism, time zones make no difference. Super powered body clocks don’t change from take-off to touch down. We saw every sunrise and very few sunsets.
When you vacation with Autism, hotels earn your approval by the water pressure in the shower and the temperature of the indoor pool.
When you vacation with Autism, you learn to eat at McDonalds at least once a day.
When you vacation with Autism, you know exactly how long that IPod battery will last before recharging and you pray it doesn’t die when you’re trying to keep a low profile. HA!
When you vacation with Autism, rules bend, ice cream melts and staying calm takes on a new desperation.
********************************************
Yes we had a half-hour conversation with our flight crew and pilots. They were amazing, engaging, and receptive to Jake. Plus gave us a dozen cookies to go!
We threw away more than one serving of ice cream because we couldn’t handle the melting.
Our days began at 5:30am, with picture walks and hiking.
The Holiday Inn has better shower pressure and a curvier shower rod than New Glarus Inn.
I'm sure I held my breath for a full 2 minutes when the security officer at the airport asked Jake his full name, destination and airline. That was intense.
I do believe Jake consumed 42 cheeseburgers, 36 from McD's.
The elevator in MN is quieter than the one in WI.
The battery in our IPod lasts approximately 4 hours.
I wanted to strangle a life guard who wouldn’t let Jake jump off the diving board with his goggles on.
The autistic dude at Mall of America drawing caricatures while stationed underneath a roller coaster track IS AMAZING!!! He gave us so much hope!
One of Jake’s meltdowns can clear a parking lot, but hey, no one called the police.
I cried more than once when Jake connected with my dad while dancing to his harmonica as well as when he started this name-calling teasing game with my mom.
When you vacation with Autism, life is definitely a TRIP!
Super Powered Vacation
June 30, 2011
When you vacation with Autism, you plan and prepare for the unexpected while expecting catastrophe.
When you vacation with Autism, smoke alarms, elevator beeps and crooked wall hangings become painfully obvious.
When you vacation with Autism, keeping routine becomes less of a ‘good idea’ and more of a necessity.
When you vacation with Autism, you hold your breath a million times a day, many times without even realizing it until you get to finally exhale.
When you vacation with Autism, watching people watching your every move spurs sadness and frustration.
When you vacation with Autism, tears flow as you see your child bond, joke and connect with distant family/friends we visit once a year.
When you vacation with Autism, scouting parking lots and open fields for meltdown compatibility happens at each destination.
When you vacation with Autism, perfect strangers share their own stories of childhood struggles.
When you vacation with Autism, staying seated in new restaurants quickly becomes an Olympic feat.
When you vacation with Autism, you earn much respect and sympathy from family members who don’t get to experience Super Powers every day.
When you vacation with Autism, flight attendants, pilots and crew members either love or hate you. This trip, they loved us, and we loved them!
When you vacation with Autism, time zones make no difference. Super powered body clocks don’t change from take-off to touch down. We saw every sunrise and very few sunsets.
When you vacation with Autism, hotels earn your approval by the water pressure in the shower and the temperature of the indoor pool.
When you vacation with Autism, you learn to eat at McDonalds at least once a day.
When you vacation with Autism, you know exactly how long that IPod battery will last before recharging and you pray it doesn’t die when you’re trying to keep a low profile. HA!
When you vacation with Autism, rules bend, ice cream melts and staying calm takes on a new desperation.
********************************************
Yes we had a half-hour conversation with our flight crew and pilots. They were amazing, engaging, and receptive to Jake. Plus gave us a dozen cookies to go!
We threw away more than one serving of ice cream because we couldn’t handle the melting.
Our days began at 5:30am, with picture walks and hiking.
The Holiday Inn has better shower pressure and a curvier shower rod than New Glarus Inn.
I'm sure I held my breath for a full 2 minutes when the security officer at the airport asked Jake his full name, destination and airline. That was intense.
I do believe Jake consumed 42 cheeseburgers, 36 from McD's.
The elevator in MN is quieter than the one in WI.
The battery in our IPod lasts approximately 4 hours.
I wanted to strangle a life guard who wouldn’t let Jake jump off the diving board with his goggles on.
The autistic dude at Mall of America drawing caricatures while stationed underneath a roller coaster track IS AMAZING!!! He gave us so much hope!
One of Jake’s meltdowns can clear a parking lot, but hey, no one called the police.
I cried more than once when Jake connected with my dad while dancing to his harmonica as well as when he started this name-calling teasing game with my mom.
When you vacation with Autism, life is definitely a TRIP!
---------------------------------------
Vacation Exhaustion
April 5, 2012
Have you ever been too tired to be tired?
Let me tell you, this week, I experienced that feeling while on vacation. We took a few days at the beach to unwind and get a change of scenery before Jake starts at a new school next week; to refuel for this massive transition.
There was actually a moment I sat, overlooking the ocean, and was so physically and emotionally exhausted, I couldn’t even close my eyes. The second my heavy and tired lids touched, they’d pop right back open. My brain would race and my shoulders stayed tight.
How could this be happening?
Jake was sound asleep in the hotel room, Chris was in a near-coma himself and here I was physically unable to rest. The weeks and months leading up to this moment have been so draining, so all consuming, you’d think I’d be able to just stop or collapse. But vacation with a super hero is anything but vacation.
Relaxing = getting off schedule.
Rolling with the punches = change = disaster.
Eating out = new foods and indigestion.
New activities = stress and overstimulation.
Ever try going on vacation but trying to keep your routine exactly the same as if you were at home?
Our morning: since the breakfast buffet starts at 6:30am we gotta be there at 6:30am! Can’t eat with too many people around nor can we wait in a long line with the eggs and sausage so far away, much less stop ourselves from gorging on the endless table of food.
The usual am run/scooter ride turns into endless trips up and down the boardwalk. Instead of clear sailing down familiar neighborhood streets we’re now dodging other joggers, dogs and tourists at breakneck speed and trying not to get too distracted. “Oh look a Ferris wheel… and a giant turtle… a sail boat… look up there at that airplane…” All observations made while cruising full speed ahead.
By the time the clock strikes 9am, I’m completely worn out. Not only did I log miles running and walking outside, but I’ve had 3 near heart attacks, met a dozen or so total strangers while apologizing for my terror on wheels, and have sand in places I don’t care to explain.
Now what!?
Better come up with something to do that involves physical exercise, that’s the best way to keep our Super Hero happy… that entire endorphin thing is real, trust me.
I can remember my mother-in-law visiting a couple years back and we had a conversation about Jake’s need for speed and his craving heavy work. She told us we were digging our own graves because the more we worked him out – the more his endurance would grow. Fast forward, her words are true, we have a child can run, scoot or bike for hours a day and never break a sweat – me I’m praying my knees last until my 45th birthday! That bone-clicking feeling is not fun, especially at 7am.
So for the two days we were at the beach, we did the same things every morning at the same time… ate at the same table for breakfast, rode scooter the same way on the boardwalk, put our shoes in the same place near the fence while we played in the waves, rode the elevator endlessly morning-noon-night, ate the same supper at the same restaurant at nearly the same table both nights!
He went to bed at the same time as any other day, 6pm, (thank God!!!) had the same warm tea before bed, and did our same trip to the roof-top of the hotel.
We did however do a few new things: we rode a 4-person 4-wheeled bike, he did not get to watch his beloved Sesame Street, we changed our plans slightly both days (just to mess with him) and met tons of new people. He started drinking sleepy-time tea before bed because I forgot the melatonin.
We forced him into spontaneous conversations while monitoring from a distance, counting the painful seconds of silence before he could think of what to say next. We pushed his buttons as much as he called the elevators, enforced new rules, higher expectations and listening skills all for nickel rewards.
He amazed me by playing in the freezing cold ocean water with his pants rolled up, he didn’t get bothered by sand caked between his toes, and didn’t melt down when he took a full-body digger into the growing foamy tide. He dealt with his first hot drink, because it said sleepytime, slept on the couch-bed (for the first time) ‘cuz that’s where little people sleep and took “raining showers” because the hose didn’t come down.
We played a little license plate game on the highway and discussed all the different states we could read from my tail-gating distance. He would read the sides of 18-wheelers and inquire about its contents and sound out new words on big signs.
So yes, we’re finally home and back into our routine, sort of. Relaxation is still a pipe dream and a full night’s sleep an unattainable fantasy. I’d trade anything for a logical, appropriate and spontaneous conversation with my super hero, morning-noon-or night; rested or unrested, irritable or not. His baby steps are life-changing accomplishments to be celebrated, even if I only have one eye barely open.
Happy Autism Awareness month.
Vacation Exhaustion
April 5, 2012
Have you ever been too tired to be tired?
Let me tell you, this week, I experienced that feeling while on vacation. We took a few days at the beach to unwind and get a change of scenery before Jake starts at a new school next week; to refuel for this massive transition.
There was actually a moment I sat, overlooking the ocean, and was so physically and emotionally exhausted, I couldn’t even close my eyes. The second my heavy and tired lids touched, they’d pop right back open. My brain would race and my shoulders stayed tight.
How could this be happening?
Jake was sound asleep in the hotel room, Chris was in a near-coma himself and here I was physically unable to rest. The weeks and months leading up to this moment have been so draining, so all consuming, you’d think I’d be able to just stop or collapse. But vacation with a super hero is anything but vacation.
Relaxing = getting off schedule.
Rolling with the punches = change = disaster.
Eating out = new foods and indigestion.
New activities = stress and overstimulation.
Ever try going on vacation but trying to keep your routine exactly the same as if you were at home?
Our morning: since the breakfast buffet starts at 6:30am we gotta be there at 6:30am! Can’t eat with too many people around nor can we wait in a long line with the eggs and sausage so far away, much less stop ourselves from gorging on the endless table of food.
The usual am run/scooter ride turns into endless trips up and down the boardwalk. Instead of clear sailing down familiar neighborhood streets we’re now dodging other joggers, dogs and tourists at breakneck speed and trying not to get too distracted. “Oh look a Ferris wheel… and a giant turtle… a sail boat… look up there at that airplane…” All observations made while cruising full speed ahead.
By the time the clock strikes 9am, I’m completely worn out. Not only did I log miles running and walking outside, but I’ve had 3 near heart attacks, met a dozen or so total strangers while apologizing for my terror on wheels, and have sand in places I don’t care to explain.
Now what!?
Better come up with something to do that involves physical exercise, that’s the best way to keep our Super Hero happy… that entire endorphin thing is real, trust me.
I can remember my mother-in-law visiting a couple years back and we had a conversation about Jake’s need for speed and his craving heavy work. She told us we were digging our own graves because the more we worked him out – the more his endurance would grow. Fast forward, her words are true, we have a child can run, scoot or bike for hours a day and never break a sweat – me I’m praying my knees last until my 45th birthday! That bone-clicking feeling is not fun, especially at 7am.
So for the two days we were at the beach, we did the same things every morning at the same time… ate at the same table for breakfast, rode scooter the same way on the boardwalk, put our shoes in the same place near the fence while we played in the waves, rode the elevator endlessly morning-noon-night, ate the same supper at the same restaurant at nearly the same table both nights!
He went to bed at the same time as any other day, 6pm, (thank God!!!) had the same warm tea before bed, and did our same trip to the roof-top of the hotel.
We did however do a few new things: we rode a 4-person 4-wheeled bike, he did not get to watch his beloved Sesame Street, we changed our plans slightly both days (just to mess with him) and met tons of new people. He started drinking sleepy-time tea before bed because I forgot the melatonin.
We forced him into spontaneous conversations while monitoring from a distance, counting the painful seconds of silence before he could think of what to say next. We pushed his buttons as much as he called the elevators, enforced new rules, higher expectations and listening skills all for nickel rewards.
He amazed me by playing in the freezing cold ocean water with his pants rolled up, he didn’t get bothered by sand caked between his toes, and didn’t melt down when he took a full-body digger into the growing foamy tide. He dealt with his first hot drink, because it said sleepytime, slept on the couch-bed (for the first time) ‘cuz that’s where little people sleep and took “raining showers” because the hose didn’t come down.
We played a little license plate game on the highway and discussed all the different states we could read from my tail-gating distance. He would read the sides of 18-wheelers and inquire about its contents and sound out new words on big signs.
So yes, we’re finally home and back into our routine, sort of. Relaxation is still a pipe dream and a full night’s sleep an unattainable fantasy. I’d trade anything for a logical, appropriate and spontaneous conversation with my super hero, morning-noon-or night; rested or unrested, irritable or not. His baby steps are life-changing accomplishments to be celebrated, even if I only have one eye barely open.
Happy Autism Awareness month.
--------------------------------------------
Putting a Superhero to Bed
Monday, February 14, 2011
The sun is setting on another busy day. Jake’s plaid book bag his hanging on the stair banister awaiting tomorrow’s homework, the favored Gator sweatshirt (every Superhero’s mandatory uniform) is sloppily thrown over the kitchen chair and the dishwasher, adorned with a hand-written sign stating: “No Licking Sam”, is chugging along in the dark kitchen.
It's 5:45pm, and time for Superhero Jake to begin the bedtime routine we’ve carried out every one of the 3,000+ days of his amazing life. The same way, the same time, every day.
“Can we have a book tonight?” Jake yells as he flies up the stairs to his bathroom. “Is it bath, books and bed?” He knows the answer; it’s the same every night too… “If you get ready for bed nicely, we’ll have time for a book.”
At this time of the day several things are necessary to ensure a smooth transition from day-time to bed-time: a low voice, slow and calm speech, no lights (or at least one on at a time) and the ability to ignore his attempts to turn bed-time into party-time.
Brushing teeth needs supervision these days, because apparently toothpaste is just too sticky for this Superhero. As I enter the bathroom, Jake is cracking up as he holds the opened Colgate tube under the faucet, filling it up with water. “That way I don’t need to put water on the brush and it comes out easier.” As I grab the tube from his hands, even the slightest squeeze sends mooshy, glittery blue toothpaste flying across the room, adorning mirrors, and covering every wall. Strike one: calmness goes out the window. (Don’t laugh, don’t laugh, don’t laugh I whisper to myself).
Pills, pee and parade down the hall to the Superhero museum bedroom need no explanation.
It’s against the Superhero’s code of conduct to listen to story time barefoot even if we just came out of the bath. And we never put back on the same socks we wore all day. So in his skivvies and a brand new pair of CLEAN SOCKS, Jake climbs into bed and cuddles up with 3 penguins, 2 dogs, a polar bear, 2 pillows, a giant doll named Charlie, a taggie blanket crammed in the crack between the wall and the bed, 2 fuzzy sheets, a quilt and a weighted blanket. While we’re reading, Jake goes from yelling out the words he recognizes, to screaming out the next page because he’s memorized the book already to reciting a conversation he heard earlier in the day. Once the recitation begins we've lost him, so I slam the book closed. His attention snaps back and he recites the last 2 pages I read just to prove he can listen, giggle and recite previous conversations at the same time. Strike two: the ability to ignore his antics at this point is gone.
Just as we think he’s drifting off, the necessary Round-Robin trip around the bedroom ensues. Jake pops out of bed, turns on the sound machine to a full blast waterfall, clicks on the pink-star night light, then darts across his room to turn on a small oscillating space heater and the little night light in the corner. Every night, in the same order – don’t change it and my goodness don’t offer to help him. That invasion of helpfulness causes him to turn them all OFF and then ON again by himself. ( Strike three: now I'm laughing, stay calm stay calm stay calm)
The clean socks worn for 20 minutes are now peeled off at the edge of his bed and tossed in-side-out into his overflowing hamper. He slides into bed as close to the wall as he can get without falling into the crack. Blankets must be pulled up tightly up under his chin in the same order every night: First a fuzzy, then second fuzzy, then quilt all tucked around his body in a mummy-like fashion, then the WEIGHTED blanket. The 25 pounder is always the hardest because those bags of beans inside tend to flop around and sit on one end. “Here comes heavy,” I announce between grunts trying to maneuver this giant blanket. “Push it in tight behind my head, back and feet!” Once he’s covered completely, an air hole is required by his head and he mumbles out his nightly prayers. “Thank you God for mom, dad, Jake, cream cheese, ice cream, candles, arts-n-crabs (crafts), basketball, globes, teacher L, teacher N, teacher S, Ipod, and ssssuuuupppppeeeerrr duper hotdogs.” Prayers begin and end the same way every single night. If he forgets to say Super duper hotdogs at the end, he’ll awake in 2 hours just to do them the right way.
Now we try to quietly slip out of the room. We turn off the heater blasting hot air, snatch the clean socks from hamper and put them back into his drawer all while calmly reminding him (in the same order) he can leave his room only at 6am, if he gets out of bed he’s risking getting angry mommy (because it took me 20 minutes to tuck him in and included a full body workout), if I hear him reciting books or conversations at 4am he’s going to regret it. "I Love You, buddy" says Daddy. Mommy's montra “You are my heart,” is the last thing he hears every night.
Putting a Superhero to Bed
Monday, February 14, 2011
The sun is setting on another busy day. Jake’s plaid book bag his hanging on the stair banister awaiting tomorrow’s homework, the favored Gator sweatshirt (every Superhero’s mandatory uniform) is sloppily thrown over the kitchen chair and the dishwasher, adorned with a hand-written sign stating: “No Licking Sam”, is chugging along in the dark kitchen.
It's 5:45pm, and time for Superhero Jake to begin the bedtime routine we’ve carried out every one of the 3,000+ days of his amazing life. The same way, the same time, every day.
“Can we have a book tonight?” Jake yells as he flies up the stairs to his bathroom. “Is it bath, books and bed?” He knows the answer; it’s the same every night too… “If you get ready for bed nicely, we’ll have time for a book.”
At this time of the day several things are necessary to ensure a smooth transition from day-time to bed-time: a low voice, slow and calm speech, no lights (or at least one on at a time) and the ability to ignore his attempts to turn bed-time into party-time.
Brushing teeth needs supervision these days, because apparently toothpaste is just too sticky for this Superhero. As I enter the bathroom, Jake is cracking up as he holds the opened Colgate tube under the faucet, filling it up with water. “That way I don’t need to put water on the brush and it comes out easier.” As I grab the tube from his hands, even the slightest squeeze sends mooshy, glittery blue toothpaste flying across the room, adorning mirrors, and covering every wall. Strike one: calmness goes out the window. (Don’t laugh, don’t laugh, don’t laugh I whisper to myself).
Pills, pee and parade down the hall to the Superhero museum bedroom need no explanation.
It’s against the Superhero’s code of conduct to listen to story time barefoot even if we just came out of the bath. And we never put back on the same socks we wore all day. So in his skivvies and a brand new pair of CLEAN SOCKS, Jake climbs into bed and cuddles up with 3 penguins, 2 dogs, a polar bear, 2 pillows, a giant doll named Charlie, a taggie blanket crammed in the crack between the wall and the bed, 2 fuzzy sheets, a quilt and a weighted blanket. While we’re reading, Jake goes from yelling out the words he recognizes, to screaming out the next page because he’s memorized the book already to reciting a conversation he heard earlier in the day. Once the recitation begins we've lost him, so I slam the book closed. His attention snaps back and he recites the last 2 pages I read just to prove he can listen, giggle and recite previous conversations at the same time. Strike two: the ability to ignore his antics at this point is gone.
Just as we think he’s drifting off, the necessary Round-Robin trip around the bedroom ensues. Jake pops out of bed, turns on the sound machine to a full blast waterfall, clicks on the pink-star night light, then darts across his room to turn on a small oscillating space heater and the little night light in the corner. Every night, in the same order – don’t change it and my goodness don’t offer to help him. That invasion of helpfulness causes him to turn them all OFF and then ON again by himself. ( Strike three: now I'm laughing, stay calm stay calm stay calm)
The clean socks worn for 20 minutes are now peeled off at the edge of his bed and tossed in-side-out into his overflowing hamper. He slides into bed as close to the wall as he can get without falling into the crack. Blankets must be pulled up tightly up under his chin in the same order every night: First a fuzzy, then second fuzzy, then quilt all tucked around his body in a mummy-like fashion, then the WEIGHTED blanket. The 25 pounder is always the hardest because those bags of beans inside tend to flop around and sit on one end. “Here comes heavy,” I announce between grunts trying to maneuver this giant blanket. “Push it in tight behind my head, back and feet!” Once he’s covered completely, an air hole is required by his head and he mumbles out his nightly prayers. “Thank you God for mom, dad, Jake, cream cheese, ice cream, candles, arts-n-crabs (crafts), basketball, globes, teacher L, teacher N, teacher S, Ipod, and ssssuuuupppppeeeerrr duper hotdogs.” Prayers begin and end the same way every single night. If he forgets to say Super duper hotdogs at the end, he’ll awake in 2 hours just to do them the right way.
Now we try to quietly slip out of the room. We turn off the heater blasting hot air, snatch the clean socks from hamper and put them back into his drawer all while calmly reminding him (in the same order) he can leave his room only at 6am, if he gets out of bed he’s risking getting angry mommy (because it took me 20 minutes to tuck him in and included a full body workout), if I hear him reciting books or conversations at 4am he’s going to regret it. "I Love You, buddy" says Daddy. Mommy's montra “You are my heart,” is the last thing he hears every night.
