Super Hero Senses (10)
It's a Sensory Thing
July 19, 2012
“…until sensory issues are dealt with in a child and he can work through them (either himself or through a sensory diet set up for him by others), social competence will fall by the wayside. It’s just impossible to concentrate on making appropriate social choices when your senses are going haywire, no matter how much training you receive.” --Temple Grandin
I’ve thought this for a long time, without any scientific or medical proof, that Jake’s first and biggest different-ability is SENSORY, then anxiety (due to overwhelming sensory input) then the autism. The problem lies in coping with his super senses in the learning environment and social situations.
We’ve learned from experience that too much sensory input jams his super brain. Connections of logic, socialization or academics no longer make it to their final and necessary destination. They get stuck in a sensory round-about and spin Jake out of control. Which is ironic, because spinning something will actually calm him!
We can tell when he’s going down this over-stim slope by watching his behaviors. Hands over ears. Eyes scan, shake and dart quickly from one thing to another. Biting on finger. Screams and eloping (we’re lucky we have warning signs)!
He spent his first years of school chewing his finger almost constantly. If someone entered the room, he’d bite his finger. If a kid next to him grunted, he’d bite his finger. A kid sitting too close to him and his finger would fall victim again. It has been gnawed on so much, the beautiful bronze pigment is gone and callous has formed making it look like a little bratwurst.
Chew toys were pretty much taken away in preschool when spit was running down his arms and onto tables. He nearly choked when he chomped the end of one of them off. His sensory outlets at that age were pushing teachers around a wagon, spin breaks (which have to be monitored because even that can lead to overstimulation), long walks, trampolines and carrying reams of paper.
But expectations rose as he progressed through the grades and much of the sensory relief fell by the wayside. Not due to anyone’s fault, just inability to monitor due to lack of resources in public school. Grades fell, regulation disappeared and overstim ruled!
Stagnant academics. Stuck in 1st grade!
In a new setting where Jake has his own 1:1 helper to monitor and manage his sensory diet, he has slowed, calmed and his brain has become available. I’m not saying that it’s all sensory, but with him it's a big part. There are no fluorescent lights in his school, it’s all lit with lamps. Rooms are small, distractions are diminished with blockers, side rooms, and sound machines. He’s offered a weighted blanket, walks outside, chew toys and fidgets during free time to get back to his happy regulated place.
What’s really cool is now that his brain is open, he'll tell us if "it’s too much." Sometimes we suspect it’s task avoidance, but there are times when he’s giving us his warning. Chris and I have become experts at scanning our surroundings to see what could be triggering his anxious feelings and sensory overload. Some of them we know in advance, but others are a total mystery.
We can now prepare and prevent sensory meltdowns by not going to places with lots of people, unless we have to and are armed with an abort/escape plan. We avoid exceedingly visually stimulating activities like say a 3D movie. When going to new places we sit distant from the crowd the first time so we have our space, avoid sitting right by a speaker – but seek out calming ceiling fans.
A strong child’s sensory needs can begin to rule your world if you’re not careful. Sometimes we push sometimes we cave. Many times I set up challenging day trips just to expose, experiment and exercise. Our decision to charge ahead can depend on the need for Jake to develop this skill at this time and the social appropriateness of a potential meltdown. I can pretty much push through church, if we’re at our home church, because most people know us now.
The biggest struggle currently is people sitting too close to us. The pew behind us is the killer, so our current solution is to have Jake sit in his own short bench and I sit behind him. That way he has his space and I’m in the safe spot behind him. We take a break half way through if we need it, but there’s more behavior management taking place than there is praying! Reinforcers, (edible usually), drawing supplies and his behavior chart are crammed in my purse.
Places like riding the Metro (subway) are inescapable. Chris really manages him carefully while staying calm and most trips are successful. It gets a little dicey when the cars are packed and there are lots of people in his personal space. Sometimes Jake insists on choosing the cars in the middle of the train, the most packed ones, and let the slow burn begin.
Much of our practice depends on how much sleep I get the night before and how much I forsee getting in the future. It’s not easy to do constant behavior management and reinforcement in public but restaurants, pools, stores, malls, banks, doctor’s offices, libraries and places with children are all part of life and he needs to know how to deal. So onward we go armed with chewys, brushes, weighted blankets and reinforcers.
Trudge lightly when managing the senses of a super hero! If there’s any one thing I’d like to share from our experience and research in over-stim land it is also from the great Temple Grandin. You cannot punish a behavior that stems from sensory overload, he cannot help it.
Think about it again.
Do not punish a behavior that stems from sensory overload. (Hitting and biting can fall into this category.)
Decipher the cause, think visually, act calmly (no emotion) and plan ahead.
July 19, 2012
“…until sensory issues are dealt with in a child and he can work through them (either himself or through a sensory diet set up for him by others), social competence will fall by the wayside. It’s just impossible to concentrate on making appropriate social choices when your senses are going haywire, no matter how much training you receive.” --Temple Grandin
I’ve thought this for a long time, without any scientific or medical proof, that Jake’s first and biggest different-ability is SENSORY, then anxiety (due to overwhelming sensory input) then the autism. The problem lies in coping with his super senses in the learning environment and social situations.
We’ve learned from experience that too much sensory input jams his super brain. Connections of logic, socialization or academics no longer make it to their final and necessary destination. They get stuck in a sensory round-about and spin Jake out of control. Which is ironic, because spinning something will actually calm him!
We can tell when he’s going down this over-stim slope by watching his behaviors. Hands over ears. Eyes scan, shake and dart quickly from one thing to another. Biting on finger. Screams and eloping (we’re lucky we have warning signs)!
He spent his first years of school chewing his finger almost constantly. If someone entered the room, he’d bite his finger. If a kid next to him grunted, he’d bite his finger. A kid sitting too close to him and his finger would fall victim again. It has been gnawed on so much, the beautiful bronze pigment is gone and callous has formed making it look like a little bratwurst.
Chew toys were pretty much taken away in preschool when spit was running down his arms and onto tables. He nearly choked when he chomped the end of one of them off. His sensory outlets at that age were pushing teachers around a wagon, spin breaks (which have to be monitored because even that can lead to overstimulation), long walks, trampolines and carrying reams of paper.
But expectations rose as he progressed through the grades and much of the sensory relief fell by the wayside. Not due to anyone’s fault, just inability to monitor due to lack of resources in public school. Grades fell, regulation disappeared and overstim ruled!
Stagnant academics. Stuck in 1st grade!
In a new setting where Jake has his own 1:1 helper to monitor and manage his sensory diet, he has slowed, calmed and his brain has become available. I’m not saying that it’s all sensory, but with him it's a big part. There are no fluorescent lights in his school, it’s all lit with lamps. Rooms are small, distractions are diminished with blockers, side rooms, and sound machines. He’s offered a weighted blanket, walks outside, chew toys and fidgets during free time to get back to his happy regulated place.
What’s really cool is now that his brain is open, he'll tell us if "it’s too much." Sometimes we suspect it’s task avoidance, but there are times when he’s giving us his warning. Chris and I have become experts at scanning our surroundings to see what could be triggering his anxious feelings and sensory overload. Some of them we know in advance, but others are a total mystery.
We can now prepare and prevent sensory meltdowns by not going to places with lots of people, unless we have to and are armed with an abort/escape plan. We avoid exceedingly visually stimulating activities like say a 3D movie. When going to new places we sit distant from the crowd the first time so we have our space, avoid sitting right by a speaker – but seek out calming ceiling fans.
A strong child’s sensory needs can begin to rule your world if you’re not careful. Sometimes we push sometimes we cave. Many times I set up challenging day trips just to expose, experiment and exercise. Our decision to charge ahead can depend on the need for Jake to develop this skill at this time and the social appropriateness of a potential meltdown. I can pretty much push through church, if we’re at our home church, because most people know us now.
The biggest struggle currently is people sitting too close to us. The pew behind us is the killer, so our current solution is to have Jake sit in his own short bench and I sit behind him. That way he has his space and I’m in the safe spot behind him. We take a break half way through if we need it, but there’s more behavior management taking place than there is praying! Reinforcers, (edible usually), drawing supplies and his behavior chart are crammed in my purse.
Places like riding the Metro (subway) are inescapable. Chris really manages him carefully while staying calm and most trips are successful. It gets a little dicey when the cars are packed and there are lots of people in his personal space. Sometimes Jake insists on choosing the cars in the middle of the train, the most packed ones, and let the slow burn begin.
Much of our practice depends on how much sleep I get the night before and how much I forsee getting in the future. It’s not easy to do constant behavior management and reinforcement in public but restaurants, pools, stores, malls, banks, doctor’s offices, libraries and places with children are all part of life and he needs to know how to deal. So onward we go armed with chewys, brushes, weighted blankets and reinforcers.
Trudge lightly when managing the senses of a super hero! If there’s any one thing I’d like to share from our experience and research in over-stim land it is also from the great Temple Grandin. You cannot punish a behavior that stems from sensory overload, he cannot help it.
Think about it again.
Do not punish a behavior that stems from sensory overload. (Hitting and biting can fall into this category.)
Decipher the cause, think visually, act calmly (no emotion) and plan ahead.
------------------------------------------------
A Sock is a Sock is a Sock
December 26, 2011
While I was sitting on the laundry room floor doing my most hated job, pairing socks, the tedious task took on a life of its own in my brewing brain!
As I was cycling through recent conversations with our Super Hero, I realized a strange thing has happened lately: deciphering Jake’s take on the world has evolved again.
For a kid who sees miniscule details instead of the big picture, how can one societal rule apply across the board? Stories we told him years and/or months ago come back in full detail if there’s a similarity present.
We ventured out to visit the National Christmas Tree and Menorah displayed downtown this holiday season. Jake started recalling stories he learned years ago. As we were approaching the tree he started reciting his - story.
“If we get too close to the White House we get put in jail right? The police on horses chase you down and put you in the back of a police car with black windows and lock you in jail right?”
All this information was gleaned from a :20 second story he saw on TV a few years ago where a guy got arrested for climbing over the fence at the White House, was promptly tackled and carted off to jail in dark cars. The mounted police were also in the picture.
One of our favorite churches is a long car ride away to a part of town that struggles with crime and poverty. When we started attending Mass there, Jake noticed many of the row houses have boarded up windows. I explained to him that they were like that because it costs a lot of money to keep houses looking good once they get really old. I also told him that people can’t always afford to buy new windows if one gets broken and some residents would buy food before fixing the house. I told him how fortunate he was because some people are very poor.
So this weekend, following Mass again, we were driving to the McDonalds and he started recounting the facts in his own jumbled way. “All these people (imagine waving arm wildly from left to right while pointing) are really super-duper poor and sad because their houses are messy and broken. They don’t have food and stuff but can’t see out those boards. They need a repair man! And they all want cheeseburgers like that one time (6 months ago) we gave a burger to that girl on the street. Right mom?”
Oh yeah, and before leaving for church I told Jake to run and put some pants on. Pants are pants right? As long as his legs are covered, they are pants. Dark blue nylon sweatpants with white racing stripes down the sides are still pants! Just not the right pants for church.
“Do I need jeans? I don’t like jeans they’re scratchy!” Jeans aka: khakis or levis.
“You need pants that have a zipper and don’t let us run fast!”
He promptly returned wearing black dress pants WITH athletic shorts over the top.
This afternoon, we were going for a walk with the dog when we met the neighbor’s dog. The dog was not feeling too social so Jake equated that into the treatment he gets from a desired friend at school.
“Is that dog feeling a lot like L. from school? He doesn’t know how to play with other people or dogs? Does that dog have Autism too?”
It’s amazing to me how all these facts of life can fall into such large brain buckets. Deciphering words that are similar but slightly different, like rhymes, are a mystery still; yet perpetrators, the projects and long pants all fall into the same “similar” compartment of his consciousness.
He does however appreciate the difference between many ‘important to him’ things in life:
Haagen Das is by far the best ice cream, hands down.
The “big” brown fleece blankie is NOT the slightly smaller brown fleece blankie, it’s much “scratchier” and unacceptable for sleeping when up against his skin.
The old Taggie blanket isn’t as good as the new Taggie blanket, (although they’re almost identical).
And a look under hood of a V8 truck is waaaay better than looking at a boring car; the batteries are bigger, the belts are better and the fan faces a different direction!
There are other times when his keen memory does pay off. Police officers are generally safe people to approach and talk to even without mommy’s permission. The metro train to get home is Red. And when mommy gets super mad she turns into a screaming “wicked warbling witch.”(His words)
Thankfully, a sock is a sock is still a sock.
A Sock is a Sock is a Sock
December 26, 2011
While I was sitting on the laundry room floor doing my most hated job, pairing socks, the tedious task took on a life of its own in my brewing brain!
As I was cycling through recent conversations with our Super Hero, I realized a strange thing has happened lately: deciphering Jake’s take on the world has evolved again.
For a kid who sees miniscule details instead of the big picture, how can one societal rule apply across the board? Stories we told him years and/or months ago come back in full detail if there’s a similarity present.
We ventured out to visit the National Christmas Tree and Menorah displayed downtown this holiday season. Jake started recalling stories he learned years ago. As we were approaching the tree he started reciting his - story.
“If we get too close to the White House we get put in jail right? The police on horses chase you down and put you in the back of a police car with black windows and lock you in jail right?”
All this information was gleaned from a :20 second story he saw on TV a few years ago where a guy got arrested for climbing over the fence at the White House, was promptly tackled and carted off to jail in dark cars. The mounted police were also in the picture.
One of our favorite churches is a long car ride away to a part of town that struggles with crime and poverty. When we started attending Mass there, Jake noticed many of the row houses have boarded up windows. I explained to him that they were like that because it costs a lot of money to keep houses looking good once they get really old. I also told him that people can’t always afford to buy new windows if one gets broken and some residents would buy food before fixing the house. I told him how fortunate he was because some people are very poor.
So this weekend, following Mass again, we were driving to the McDonalds and he started recounting the facts in his own jumbled way. “All these people (imagine waving arm wildly from left to right while pointing) are really super-duper poor and sad because their houses are messy and broken. They don’t have food and stuff but can’t see out those boards. They need a repair man! And they all want cheeseburgers like that one time (6 months ago) we gave a burger to that girl on the street. Right mom?”
Oh yeah, and before leaving for church I told Jake to run and put some pants on. Pants are pants right? As long as his legs are covered, they are pants. Dark blue nylon sweatpants with white racing stripes down the sides are still pants! Just not the right pants for church.
“Do I need jeans? I don’t like jeans they’re scratchy!” Jeans aka: khakis or levis.
“You need pants that have a zipper and don’t let us run fast!”
He promptly returned wearing black dress pants WITH athletic shorts over the top.
This afternoon, we were going for a walk with the dog when we met the neighbor’s dog. The dog was not feeling too social so Jake equated that into the treatment he gets from a desired friend at school.
“Is that dog feeling a lot like L. from school? He doesn’t know how to play with other people or dogs? Does that dog have Autism too?”
It’s amazing to me how all these facts of life can fall into such large brain buckets. Deciphering words that are similar but slightly different, like rhymes, are a mystery still; yet perpetrators, the projects and long pants all fall into the same “similar” compartment of his consciousness.
He does however appreciate the difference between many ‘important to him’ things in life:
Haagen Das is by far the best ice cream, hands down.
The “big” brown fleece blankie is NOT the slightly smaller brown fleece blankie, it’s much “scratchier” and unacceptable for sleeping when up against his skin.
The old Taggie blanket isn’t as good as the new Taggie blanket, (although they’re almost identical).
And a look under hood of a V8 truck is waaaay better than looking at a boring car; the batteries are bigger, the belts are better and the fan faces a different direction!
There are other times when his keen memory does pay off. Police officers are generally safe people to approach and talk to even without mommy’s permission. The metro train to get home is Red. And when mommy gets super mad she turns into a screaming “wicked warbling witch.”(His words)
Thankfully, a sock is a sock is still a sock.
------------------------------------------------
Jake my GPS
October 30, 2011
I like to think that God is my pilot, although admit I fail miserably at following ALL His direction, but I can say without a doubt, Jake is my co-pilot. We knew from a very early age that Jake’s geography skills would far outweigh mine in no time at all. (For the record, I have no sense of direction, I don’t care where the sun is.)
Case in point: When Jake was 5 and we were driving one of our many trips to visit friends in South Carolina (without daddy), I distinctly remember exiting the highway onto a long, curvy road in search of gas. Jake's super powered ears could hear me under my breath saying, there’s no way I’m going to remember how to get back to the highway and praying I wouldn’t run out of gas before we found the petrol pump. The glowing Shell Station sign popped out of the woods a few miles into the country, thank God.
After filling up, I was so exhausted from driving 7 hours already, I realized that I hadn’t paid attention to how we found the station to begin with. So, I took a chance and asked Jake. With turn by turn precision he directed me 2 miles out of the boonies back to the highway, even heading in the right direction.
I was amazed at the time, but now have come to rely on his navigational expertise. He puts his skills to use while practicing riding on the trains around the city. Yes, I know, he doesn’t have to navigate on the train, but his ability to find the proper train, headed in the right direction saved me just the other day.
Jake’s had lots of anxiety when it comes to riding the rails – it’s not the actual ride that bothers him, but the “doo-doo doors are closing, step back” recordings that play on the Metro as well as the awful muffled announcements of the drivers. So after a 2-year hiatus from riding the Metro, we’re back practicing.
We arrived at the Metro station in pouring, freezing rain. I chose to park in the garage, but turn after turn up the garage to the 4th floor (so we can ride the elevator), a zillion elevator rides up-down-up-down-up-down, entering the station from a different side, by the time I get to the train I have no idea which way to sit. If I sit backwards, I’ll puke, so facing front is imperative.
Jake goes with confidence and finds a seat – every time facing the proper way. I don’t know how he knows this, but he's been right every time.
“Jake is this the right way?”
“Yes, we go this way, that’s south.”
“Well ok.”
The train, this time, is going out of service before we reach our destination. Squelching my panic, everyone has to exit at the same station and sit and wait for another train. Again, he knows which train to enter, just by the direction it’s travelling. Me, I have to ask the attendant about a million times before I feel reassured.
Finally, we arrive at our destination; Metro Center. This place sends waves of panic through my bones and my brain. I step off the train and immediately stop breathing: so many people all going different directions, bumping in to me and tripping over him, I grip his hand tighter.
“Mom, we have to go this way to get to the street, but let’s ride the elevator first.”
Up-down-up-down, up elevator, down escalator, up escalator, down elevator, where the hell am I?????
“Mom, this way is out .” Gotcha smarty (thinking smart ass).
So we’re on the street now, rain pouring down and freezing to the ground, so I peak my head out from the overhang to spot our final destination The Old Post Office Tower. By the way, don’t go up in the tower during a snow/sleet storm, not too much fun. I’m looking with panic, crap I think we got off at the wrong stop. I can barely see through my squinting eyes and can’t spot the tower.
“Jake where’s the tower, I don’t see it?”
“It’s right there mom, go down to the corner and cross then cross, remember?”
Obviously I didn’t remember, that would by why I’m asking. I don’t believe him for sure and I don’t feel like running around DC street blocks in pouring rain. I asked a dude who was there trying to sell umbrellas.
“Which way is the Old Post Office?”
“It’s right there, go down to the corner of Penn and cross then cross, see it?”
“Gotcha… thanks… man Jake, you were right!”
The dude, now laughing outright, high-fives Jake and tells me, “You should listen to the kid.”
After jogging to the tower, we stopped for a snack, elevator ride up-down-up-down, freeze butt off while 12 floors up in the air, eat ice cream, potty and we’re out.
Ugh, we went out a different door on the side of the building. But which side? Got me. My old rule of thumb when lost in DC 'Where's the water, where's the monument' doesn't apply here!
“Jake do you remember which way the station is?”
“There’s one right here but that’s orange/blue line, if we go this way, it’ll be the red line up there,” he answered definitively with his new found confidence.
Around the corner, down two blocks, under the Subway awning and there’s the escalator. Ride down with Jake squealing with delight about how cool the neighboring broken escalator is and we land in the tunnel. Well there’s only one way to go here so I can’t miss. But as we’re walking I’m trying to remember if Red line is on the top floor or the bottom floor. We saw all the lines earlier during our elevator tour and my brain can’t recall while dodging other rude riders. (Ugh I hate the city living)
“Jake is our train on the top or the bottom?”
“Top mom, see that sign says Shaaddy. Grove. Reedddd. Line.”
“Thanks buddy.”
I’ve always been amazed by Chris’ ability to navigate his way in foreign places with such ease, but chalked it up to lots of practice travelling for his job and his dad is a map/geography/driver’s ed teacher genius. He’s definitely blessed with the same genes, but for Jake, being able to memorize maps in his head and recall visual cues on command is truly amazing. Another super power revealed.
So glad I have both dudes under my roof directing me on this twisted path called life. Now if only someone could predict the future, aim me in the right direction and give me a push, we’d be getting somewhere!
Jake my GPS
October 30, 2011
I like to think that God is my pilot, although admit I fail miserably at following ALL His direction, but I can say without a doubt, Jake is my co-pilot. We knew from a very early age that Jake’s geography skills would far outweigh mine in no time at all. (For the record, I have no sense of direction, I don’t care where the sun is.)
Case in point: When Jake was 5 and we were driving one of our many trips to visit friends in South Carolina (without daddy), I distinctly remember exiting the highway onto a long, curvy road in search of gas. Jake's super powered ears could hear me under my breath saying, there’s no way I’m going to remember how to get back to the highway and praying I wouldn’t run out of gas before we found the petrol pump. The glowing Shell Station sign popped out of the woods a few miles into the country, thank God.
After filling up, I was so exhausted from driving 7 hours already, I realized that I hadn’t paid attention to how we found the station to begin with. So, I took a chance and asked Jake. With turn by turn precision he directed me 2 miles out of the boonies back to the highway, even heading in the right direction.
I was amazed at the time, but now have come to rely on his navigational expertise. He puts his skills to use while practicing riding on the trains around the city. Yes, I know, he doesn’t have to navigate on the train, but his ability to find the proper train, headed in the right direction saved me just the other day.
Jake’s had lots of anxiety when it comes to riding the rails – it’s not the actual ride that bothers him, but the “doo-doo doors are closing, step back” recordings that play on the Metro as well as the awful muffled announcements of the drivers. So after a 2-year hiatus from riding the Metro, we’re back practicing.
We arrived at the Metro station in pouring, freezing rain. I chose to park in the garage, but turn after turn up the garage to the 4th floor (so we can ride the elevator), a zillion elevator rides up-down-up-down-up-down, entering the station from a different side, by the time I get to the train I have no idea which way to sit. If I sit backwards, I’ll puke, so facing front is imperative.
Jake goes with confidence and finds a seat – every time facing the proper way. I don’t know how he knows this, but he's been right every time.
“Jake is this the right way?”
“Yes, we go this way, that’s south.”
“Well ok.”
The train, this time, is going out of service before we reach our destination. Squelching my panic, everyone has to exit at the same station and sit and wait for another train. Again, he knows which train to enter, just by the direction it’s travelling. Me, I have to ask the attendant about a million times before I feel reassured.
Finally, we arrive at our destination; Metro Center. This place sends waves of panic through my bones and my brain. I step off the train and immediately stop breathing: so many people all going different directions, bumping in to me and tripping over him, I grip his hand tighter.
“Mom, we have to go this way to get to the street, but let’s ride the elevator first.”
Up-down-up-down, up elevator, down escalator, up escalator, down elevator, where the hell am I?????
“Mom, this way is out .” Gotcha smarty (thinking smart ass).
So we’re on the street now, rain pouring down and freezing to the ground, so I peak my head out from the overhang to spot our final destination The Old Post Office Tower. By the way, don’t go up in the tower during a snow/sleet storm, not too much fun. I’m looking with panic, crap I think we got off at the wrong stop. I can barely see through my squinting eyes and can’t spot the tower.
“Jake where’s the tower, I don’t see it?”
“It’s right there mom, go down to the corner and cross then cross, remember?”
Obviously I didn’t remember, that would by why I’m asking. I don’t believe him for sure and I don’t feel like running around DC street blocks in pouring rain. I asked a dude who was there trying to sell umbrellas.
“Which way is the Old Post Office?”
“It’s right there, go down to the corner of Penn and cross then cross, see it?”
“Gotcha… thanks… man Jake, you were right!”
The dude, now laughing outright, high-fives Jake and tells me, “You should listen to the kid.”
After jogging to the tower, we stopped for a snack, elevator ride up-down-up-down, freeze butt off while 12 floors up in the air, eat ice cream, potty and we’re out.
Ugh, we went out a different door on the side of the building. But which side? Got me. My old rule of thumb when lost in DC 'Where's the water, where's the monument' doesn't apply here!
“Jake do you remember which way the station is?”
“There’s one right here but that’s orange/blue line, if we go this way, it’ll be the red line up there,” he answered definitively with his new found confidence.
Around the corner, down two blocks, under the Subway awning and there’s the escalator. Ride down with Jake squealing with delight about how cool the neighboring broken escalator is and we land in the tunnel. Well there’s only one way to go here so I can’t miss. But as we’re walking I’m trying to remember if Red line is on the top floor or the bottom floor. We saw all the lines earlier during our elevator tour and my brain can’t recall while dodging other rude riders. (Ugh I hate the city living)
“Jake is our train on the top or the bottom?”
“Top mom, see that sign says Shaaddy. Grove. Reedddd. Line.”
“Thanks buddy.”
I’ve always been amazed by Chris’ ability to navigate his way in foreign places with such ease, but chalked it up to lots of practice travelling for his job and his dad is a map/geography/driver’s ed teacher genius. He’s definitely blessed with the same genes, but for Jake, being able to memorize maps in his head and recall visual cues on command is truly amazing. Another super power revealed.
So glad I have both dudes under my roof directing me on this twisted path called life. Now if only someone could predict the future, aim me in the right direction and give me a push, we’d be getting somewhere!
---------------------------------
Hitting the Brakes
September 7, 2011
Life moves at a different speed on the spectrum: Speeding fast down-hills and very slow climbs back up. Things that were typical for toddlers are now desired dreams of our elementary school Super Hero. If I hear another Wow Wow Wubzy episode, I believe I will grow a yellow tail and start bouncing off the walls myself.
The beauty of it is: he’s finally ‘getting’ the jokes and the silliness of the show, whereas before it was just an annoying cartoon which he found intolerable and over stimulating.
As these cool developmental delays start to steam ahead, I believe our lives needs to come to a screeching halt. We’re presented with more teachable moments and more life lessons as Jake matures and manipulates his role in this family and world. It’s really cool, yet exhausting at the same time.
While Jake presents as a perfectly fine nearly 5’ tall 10-year-old (still 8 as of this writing) it’s hard to get in our heads that he’s still milestones behind. I forget, professionals forget and strangers expect. You’ve heard the saying, “lower your expectations and you’ll never be disappointed”; in a way it’s true when raising a Super Hero. The stepping stones of life come in baby strides and each need to be celebrated.
As Jake’s approaching his 9th birthday he’s outgrown his bicycle. Heading to the bike store to get measured and pick out a new set of wheels was fine but we could feel the anxiety building.
“I want a limoseno bike so I can bring friends on the ride with me. And a flashing light that goes on when I stop and a little bar on the front to go out when I stop to pick up more friends just like the school bus!”
You see, while Jake is big enough to probably ride a ten speed with hand breaks, he’s not there yet. So as we cruise up and down the lines of bikes, Jake bends over and pushes on all the pedals. With each clickety-click spin backwards his anxiety ratchets up. While still bending over between the bikes on the floor, he screeches.
“There’s no brakes, no brakes!!!”
“We need to have the ssssshhhhhh stoppers on the pedals,” crying now with tears in his eyes and jumping up and down.
No use trying to comfort him at this point, his brain is off. He can’t come back. Redirect, redirect, to the cool flashing lights and helmets on the wall. Way to go daddy!
Part of me thought, buy the damn bike on the floor with the gears and the brakes and he’ll learn.
Then the other part of me thought, if we get that bike, he’ll learn his lessons while smashing into a tree, trying to switch distracting gears mistakenly for putting on the hand brakes.
Which scenario do we want? This is one of those moments where we have to just step back and realize while he may be bigger, stronger and more agile than most kids in the neighborhood, what’s the best choice for a birthday present? A bike he’ll be afraid of but looks like other kids’ or one that will build confidence, be safe and fun to ride.
Ding Ding You Win: Safety
While most kids his age have progressed the hand brakes and gears, we’ve ordered what they call a ‘beach bike’ from NY to be shipped in. It’s one speed and pedal brakes. It’s black with a big seat and sunshine on the chain guard and frame. (By the way he asked me about a month ago for a sunshine bike – Jesus, could he be clairvoyant too?)
As life whizzes by us at a speed to make our heads spin, remember to apply the brakes. Get outside of “the Joneses” and forcing our square Super Heroes into round societal expectations. Make the choices that are safe, confidence building and teachable for your child and coast through life with more miraculous moments.
Just remember to wear your helmet!
Hitting the Brakes
September 7, 2011
Life moves at a different speed on the spectrum: Speeding fast down-hills and very slow climbs back up. Things that were typical for toddlers are now desired dreams of our elementary school Super Hero. If I hear another Wow Wow Wubzy episode, I believe I will grow a yellow tail and start bouncing off the walls myself.
The beauty of it is: he’s finally ‘getting’ the jokes and the silliness of the show, whereas before it was just an annoying cartoon which he found intolerable and over stimulating.
As these cool developmental delays start to steam ahead, I believe our lives needs to come to a screeching halt. We’re presented with more teachable moments and more life lessons as Jake matures and manipulates his role in this family and world. It’s really cool, yet exhausting at the same time.
While Jake presents as a perfectly fine nearly 5’ tall 10-year-old (still 8 as of this writing) it’s hard to get in our heads that he’s still milestones behind. I forget, professionals forget and strangers expect. You’ve heard the saying, “lower your expectations and you’ll never be disappointed”; in a way it’s true when raising a Super Hero. The stepping stones of life come in baby strides and each need to be celebrated.
As Jake’s approaching his 9th birthday he’s outgrown his bicycle. Heading to the bike store to get measured and pick out a new set of wheels was fine but we could feel the anxiety building.
“I want a limoseno bike so I can bring friends on the ride with me. And a flashing light that goes on when I stop and a little bar on the front to go out when I stop to pick up more friends just like the school bus!”
You see, while Jake is big enough to probably ride a ten speed with hand breaks, he’s not there yet. So as we cruise up and down the lines of bikes, Jake bends over and pushes on all the pedals. With each clickety-click spin backwards his anxiety ratchets up. While still bending over between the bikes on the floor, he screeches.
“There’s no brakes, no brakes!!!”
“We need to have the ssssshhhhhh stoppers on the pedals,” crying now with tears in his eyes and jumping up and down.
No use trying to comfort him at this point, his brain is off. He can’t come back. Redirect, redirect, to the cool flashing lights and helmets on the wall. Way to go daddy!
Part of me thought, buy the damn bike on the floor with the gears and the brakes and he’ll learn.
Then the other part of me thought, if we get that bike, he’ll learn his lessons while smashing into a tree, trying to switch distracting gears mistakenly for putting on the hand brakes.
Which scenario do we want? This is one of those moments where we have to just step back and realize while he may be bigger, stronger and more agile than most kids in the neighborhood, what’s the best choice for a birthday present? A bike he’ll be afraid of but looks like other kids’ or one that will build confidence, be safe and fun to ride.
Ding Ding You Win: Safety
While most kids his age have progressed the hand brakes and gears, we’ve ordered what they call a ‘beach bike’ from NY to be shipped in. It’s one speed and pedal brakes. It’s black with a big seat and sunshine on the chain guard and frame. (By the way he asked me about a month ago for a sunshine bike – Jesus, could he be clairvoyant too?)
As life whizzes by us at a speed to make our heads spin, remember to apply the brakes. Get outside of “the Joneses” and forcing our square Super Heroes into round societal expectations. Make the choices that are safe, confidence building and teachable for your child and coast through life with more miraculous moments.
Just remember to wear your helmet!
--------------------------------------
Back-seat Builder
March 7, 2011
There’s a phase in life when a clean and neatly- detailed car turns into a travelling playpen and stale french fry depository. A nice pile of napkins in the glove box turns into a giant bottle of Wet Wipes in the cup holder and clean seats become crusted under carseats. The kid phase! For a child with Super Powers however, things end up in the car that have never been there before.
Currently, the contents of our back seat include: a green metallic party horn, a metal roll up ruler, two neck pillows, a couch pillow, 4 winter hats, empty plastic soda cups, 2 headbands, a plastic heart toy, a toy snow blower, a pair of kids sunglasses, 2 empty boxes and string.
When you have a kiddo like Jake, play takes on an entirely new meaning. His Super powers have made him extremely creative. His eyes take snapshots of a world we don’t even see. He builds and creates 3-D replicas of those photos at every spare moment. It breaks. He screams. He builds again. So, when our house filled up with replicas of amusement park rides, blood pressure machines, fake smoke detectors, as well as arts ‘n craft projects all over our walls, our creative creature moved to a cleaner canvas -- the CRV.
Now when I’m driving I hear “ssssstttttooooppp, ssttoopp, stop, STOP the car! Mom don’t turn the corners so fast, go around the speed bumps and sewer holes, you’re breaking my building.” Most of the designs dangle from a main base, a dark blue neck pillow crammed into little support bar above his seat. Did you know one pillow can hold about 6 smaller objects if stacked properly, if you don’t hit any bumps? Try driving into DC on Connecticut Ave, center lane, and not hit a sewer!
For miles and miles, he delicately balances object upon object begging me to never leave the highway. “Stay going straight and fast mommy. Let’s NOT go onto the District bumpy roads my toys will break!” He’ll try to use all his items and then sneaks into the seat pocket or middle tray for more. My blackberry holder, missing for weeks, was discovered crammed into the door handle décor.
If something doesn’t stick just the right way, “mom, where’s the duct tape?” He even taped a birthday card with a picture of an ice cream cone onto his window as an added touch.
Complete silence is usually the best atmosphere for building. Turning on the radio or a CD is comparable to cutting off his arm. This has been a problem for years, but now, when he’s concentrating so intently on his creations, music is disastrous. “When is it going off at?” Jake shouts from the back seat. “Please put on cello, cello, no words music, and just cello 90-point-9!” He can tolerate music as long as he knows the off time and it’s Classical. I can usually go about 20 minutes max with tunes on before the moaning and whining ensues.
The next challenge is presented when it’s time to actually get out of the car. “I can’t get out of the car here, let me climb over the other seat.”
"Nope, you get out your door," I say. The newest structure which is hanging from ceiling to lap, is blocking the door. The child nearly bends his body into a pretzel shape to slither out under the dangling design without rocking or breaking it.
All this work, all this determination, all the effort, then we SLAM the car doors!
CRASH – RUNNNNNN!!!!!
Back-seat Builder
March 7, 2011
There’s a phase in life when a clean and neatly- detailed car turns into a travelling playpen and stale french fry depository. A nice pile of napkins in the glove box turns into a giant bottle of Wet Wipes in the cup holder and clean seats become crusted under carseats. The kid phase! For a child with Super Powers however, things end up in the car that have never been there before.
Currently, the contents of our back seat include: a green metallic party horn, a metal roll up ruler, two neck pillows, a couch pillow, 4 winter hats, empty plastic soda cups, 2 headbands, a plastic heart toy, a toy snow blower, a pair of kids sunglasses, 2 empty boxes and string.
When you have a kiddo like Jake, play takes on an entirely new meaning. His Super powers have made him extremely creative. His eyes take snapshots of a world we don’t even see. He builds and creates 3-D replicas of those photos at every spare moment. It breaks. He screams. He builds again. So, when our house filled up with replicas of amusement park rides, blood pressure machines, fake smoke detectors, as well as arts ‘n craft projects all over our walls, our creative creature moved to a cleaner canvas -- the CRV.
Now when I’m driving I hear “ssssstttttooooppp, ssttoopp, stop, STOP the car! Mom don’t turn the corners so fast, go around the speed bumps and sewer holes, you’re breaking my building.” Most of the designs dangle from a main base, a dark blue neck pillow crammed into little support bar above his seat. Did you know one pillow can hold about 6 smaller objects if stacked properly, if you don’t hit any bumps? Try driving into DC on Connecticut Ave, center lane, and not hit a sewer!
For miles and miles, he delicately balances object upon object begging me to never leave the highway. “Stay going straight and fast mommy. Let’s NOT go onto the District bumpy roads my toys will break!” He’ll try to use all his items and then sneaks into the seat pocket or middle tray for more. My blackberry holder, missing for weeks, was discovered crammed into the door handle décor.
If something doesn’t stick just the right way, “mom, where’s the duct tape?” He even taped a birthday card with a picture of an ice cream cone onto his window as an added touch.
Complete silence is usually the best atmosphere for building. Turning on the radio or a CD is comparable to cutting off his arm. This has been a problem for years, but now, when he’s concentrating so intently on his creations, music is disastrous. “When is it going off at?” Jake shouts from the back seat. “Please put on cello, cello, no words music, and just cello 90-point-9!” He can tolerate music as long as he knows the off time and it’s Classical. I can usually go about 20 minutes max with tunes on before the moaning and whining ensues.
The next challenge is presented when it’s time to actually get out of the car. “I can’t get out of the car here, let me climb over the other seat.”
"Nope, you get out your door," I say. The newest structure which is hanging from ceiling to lap, is blocking the door. The child nearly bends his body into a pretzel shape to slither out under the dangling design without rocking or breaking it.
All this work, all this determination, all the effort, then we SLAM the car doors!
CRASH – RUNNNNNN!!!!!
----------------------------------------------
Snaps, Buttons, Laces, OH MY-lanta!!!
March 5, 2011
The fasteners of life can unglue your sanity when you have a Super Powered child. While the skill of snapping pants, buttoning shirts and lacing shoes are milestones for many toddler-sized kiddos, those skills completely escape our great big Super hero and many of his great big friends.
I’m not sure if it’s the planning, the actual motor skill, or the strength required that prohibits these guys from accomplishing these tiny tasks of life, but it sure can be frustrating, from a parent’s perspective. Shopping for elastic band pants in a size 14 is not easy. In fact, that’s the biggest size they come! Forget the theme song Forever in Bluejeans… we’re Forever in Sweats!
Jake can sit down and do all the fasteners on those little puzzle boards: unhooking hooks, twisting locks, and opening latches came easily, then he pulled on a pair of jeans! We just accomplished the button on his new faded Levis, but not without getting it written into his IEP for all of 1st grade! His OT at school worked on it weekly, we practiced at home repeatedly for 2 years before we saw him do it alone. We were so excited when he independently buttoned his pants we took pictures and filled a waffle cone to the top with birthday cake flavored ice cream. For the record, neither one of us could button them after that!
Following this huge accomplishment the child will still not wear blue jeans to school. “They are too rough on my legs, too tight here, and hard to get off when I go potty.” Yes… the photo finish to the bathroom is the deal breaker. We practice on the weekends when someone is around to handily grab the assist in the john and one day someone will make jeans soft enough for our sensory friends.
Snap pants have proven successful; however they’re hard to come by, and have you seen a kids shirt with snaps lately. In the words of Jake, “Not so much!”
Lacing and tying shoes is another obstacle worthy of the three nervous breakdowns it has already caused me. Before the school year started, going into his 2nd grade year, we spent 3 hours at the mall. Remember, we don’t spend three minutes doing anything, let alone three hours!
There we were, store to store, clerk to clerk, funny look to funny look, in search of the blessed Velcro shoes for my giant kid who looks like a 12 year old. “No lace up shoes in a size 5?!?!” Jake would shout at every salesperson we met. Just when I resigned myself to the fact that he’s not ready and he’ll end his school career as it started, wearing Velcro shoes, the Sketchers jumped off the shelf. I almost cried. This time, mommy caved, Jake got a pass.
Much to his dismay, I put my foot down last week. Lacing and tying is tough, on my radar and on his new IEP. So we took a trip to Mo’s to buy ‘big boy lace up shoes’. All the way to the store, reminders, prompts, and practice talking about lace shoes. I can sense his anxiety rising but he’s ok. Jake crazily runs up and down every aisle taking snapshots of all the shoes in his head and comparing them to the catalog already there.
Narration: “These are like Mr. N’s shoes. These are like Mr. L’s shoes. These are like D’s shoes!” so on and so forth. I made a mental note, none of them were velcro.
He proudly picked out a pair of Nike high tops and I almost choked. He popped them on and I tied them up tight. “Make sure they run well and jump high I say,” as this clerk looks at me like an alien. Jake runs around and comes back to declare, “They hurt my elbow/ankle bone.” Hallelujah, I hear playing in my head. These babies are not cheap. Then the helpful clerk points out that “he can change the color of the Nike stripe every day if he wants, they’re SO cool.” Really, did you need to say that? SOLD! Sore ankle bone or not, no other shoes have the cool colored papers to slip in behind the Nike swoosh. “Maybe we don’t have to lace them up all the way high, mommy.”
I think we’re ready. One of Jake’s awesome teachers suggested dying half the shoe lace a different color so he can see to practice tying. The work is just beginning and we’re at the base of the shoe lace mountain.
As he put his big boy high tops away in the closet before bed he asked me, “Can I wear my new pants to church tomorrow?”
I answer, “If you button them yourself, you sure can.”
But mommy, “You’ll need to help me with my belt.”
And so it goes.
Snaps, Buttons, Laces, OH MY-lanta!!!
March 5, 2011
The fasteners of life can unglue your sanity when you have a Super Powered child. While the skill of snapping pants, buttoning shirts and lacing shoes are milestones for many toddler-sized kiddos, those skills completely escape our great big Super hero and many of his great big friends.
I’m not sure if it’s the planning, the actual motor skill, or the strength required that prohibits these guys from accomplishing these tiny tasks of life, but it sure can be frustrating, from a parent’s perspective. Shopping for elastic band pants in a size 14 is not easy. In fact, that’s the biggest size they come! Forget the theme song Forever in Bluejeans… we’re Forever in Sweats!
Jake can sit down and do all the fasteners on those little puzzle boards: unhooking hooks, twisting locks, and opening latches came easily, then he pulled on a pair of jeans! We just accomplished the button on his new faded Levis, but not without getting it written into his IEP for all of 1st grade! His OT at school worked on it weekly, we practiced at home repeatedly for 2 years before we saw him do it alone. We were so excited when he independently buttoned his pants we took pictures and filled a waffle cone to the top with birthday cake flavored ice cream. For the record, neither one of us could button them after that!
Following this huge accomplishment the child will still not wear blue jeans to school. “They are too rough on my legs, too tight here, and hard to get off when I go potty.” Yes… the photo finish to the bathroom is the deal breaker. We practice on the weekends when someone is around to handily grab the assist in the john and one day someone will make jeans soft enough for our sensory friends.
Snap pants have proven successful; however they’re hard to come by, and have you seen a kids shirt with snaps lately. In the words of Jake, “Not so much!”
Lacing and tying shoes is another obstacle worthy of the three nervous breakdowns it has already caused me. Before the school year started, going into his 2nd grade year, we spent 3 hours at the mall. Remember, we don’t spend three minutes doing anything, let alone three hours!
There we were, store to store, clerk to clerk, funny look to funny look, in search of the blessed Velcro shoes for my giant kid who looks like a 12 year old. “No lace up shoes in a size 5?!?!” Jake would shout at every salesperson we met. Just when I resigned myself to the fact that he’s not ready and he’ll end his school career as it started, wearing Velcro shoes, the Sketchers jumped off the shelf. I almost cried. This time, mommy caved, Jake got a pass.
Much to his dismay, I put my foot down last week. Lacing and tying is tough, on my radar and on his new IEP. So we took a trip to Mo’s to buy ‘big boy lace up shoes’. All the way to the store, reminders, prompts, and practice talking about lace shoes. I can sense his anxiety rising but he’s ok. Jake crazily runs up and down every aisle taking snapshots of all the shoes in his head and comparing them to the catalog already there.
Narration: “These are like Mr. N’s shoes. These are like Mr. L’s shoes. These are like D’s shoes!” so on and so forth. I made a mental note, none of them were velcro.
He proudly picked out a pair of Nike high tops and I almost choked. He popped them on and I tied them up tight. “Make sure they run well and jump high I say,” as this clerk looks at me like an alien. Jake runs around and comes back to declare, “They hurt my elbow/ankle bone.” Hallelujah, I hear playing in my head. These babies are not cheap. Then the helpful clerk points out that “he can change the color of the Nike stripe every day if he wants, they’re SO cool.” Really, did you need to say that? SOLD! Sore ankle bone or not, no other shoes have the cool colored papers to slip in behind the Nike swoosh. “Maybe we don’t have to lace them up all the way high, mommy.”
I think we’re ready. One of Jake’s awesome teachers suggested dying half the shoe lace a different color so he can see to practice tying. The work is just beginning and we’re at the base of the shoe lace mountain.
As he put his big boy high tops away in the closet before bed he asked me, “Can I wear my new pants to church tomorrow?”
I answer, “If you button them yourself, you sure can.”
But mommy, “You’ll need to help me with my belt.”
And so it goes.
--------------------------------------
Super-Powered Vision: A Blessing and A Curse
March 2, 2011
Many times the main characteristic of a child with Autism is the fact that they ‘seem to be in their own world’, or ‘checked out of reality’. One of the main reasons we say Jake has Super powers is because of his ridiculously heightened awareness of absolutely everything. His super-duper X-ray vision and unwavering perceptiveness has made living in this busy world, with this kiddo, a thrill ride that rivals reality.
It amazes and blesses all who witness his ability to spot things most people just miss. Last month, while staying on the beach with Grandma and Grandpa K., Jake was standing at the sea shore looking back at the beautiful condominium where we stayed. I was sure he was taking in the awesomely perfect geometric pattern the windows and balconies created until he pointed toward the top. “What’s that ball for?” he asked.
Really a little ball, where? I was scanning the building; various balconies loaded with toys and couldn’t see a ball. Then he told me to look on the very tip top. Up 13 floors sat a tiny, red flashing ball-shaped light atop the building. “Do you like that red light Jake?”
“Yes, it’s so COOOOOOOOL!” he said while excitedly dancing around in the sand. He was grinning from ear to ear as we shared his gaze; I think he was proud of himself.
I can remember some years back when we received a bouncy horse. While rearranging the play room, I found a tiny flag that belonged on the top of a very ornate Carousel toy stationed across the room. I popped the flag into place and never gave it another thought.
Knowing that changes totally throw Jake off course, we prepped him for a ‘very big surprise’ the day we revealed the bouncy horse. We set the horse in the middle of the doorway to his play room thinking he’ll never miss it and be so excited to climb aboard. As he entered the room, he eagerly scanned the room looking for his surprise while standing literally a foot from this giant new horse. We pointed out the horse and asked what he thought. “There’s a little flag on top the merry-go-round! You found it!” That toy was across the 18’ room. He about tripped over the horse, gave it a look like ‘what’s that doing there?’ and went to investigate the 1” flag.
On the same grand scale, I met Jake at the front door recently as the school bus dropped him off. My hair was messily piled on top of my head in a folded ponytail and I was wearing a new sweater. I was planning for fallout because I had on something new but never expected what really happened next. He came running off the bus yelling, “Mom, mom, mom did you get a new………. hairband?” I looked at him and answered yes but, “do you like my new shirt?”
“Nope, not so much.”
His eye sight has also played tricks on us. Since he has such an amazing skill, we thought he’d surely be able to help us out once in a while. “Hey, buddy, could you find the hot dogs in the freezer and take them out?”
“Sure,” he’d answer and head for the fridge. He would stand there, still to this day, with the door hanging open unable to spot the package. The most obvious things, even right in front of him, completely escape him if there are other things near/surrounding it.
We also thought he could read at the age of three because his photographic abilities allowed him to memorize each page. So we’d read a new book once, look at it the next night and he’d recite it back to us.
We’ve all learned to do just about everything in near darkness. There were several years where if we turned on certain lights in the house, or too many at one time, it would somehow trigger a tantrum. I can cook an entire dinner in complete darkness, and my oven light is broken! Slowly, we’ve outgrown some of this, but all of our switch plates do have dimmers for those now rare ‘off days’.
Now this ability to see every detail, and I mean every detail; can be a curse when it’s paired with lack of social skills.
“Mom, did you hurt your lip?”
“No buddy, that’s a cold sore, but thanks for pointing it out.”
“Mommy you have red dots on your face.”
“Thanks Jake, those are called pimples.”
“Does everybody get those pimples?” he’d continue while pushing on them. (Mommy gggrrr)
“Hey… that lady has a big tummy; it’s out of her pants! Look! Whoa! AAhhhahahah!” {This moment I pray the long awaited skill of pointing would disappear}
“Do all big girls have a tummy like that out of their pants?” he inquires while standing about 2 feet from the woman.
It’s not unusual for him to describe someone to me like this:
“Mom do you know Mrs. X at school?”
“No Jake, what does she look like?”
“I don’t know. Umm she’s tall like mommy and flowers on her toe nails.”
“Jake, is she beautiful brown like Jake or pink like mommy?”
“Uuummm I’m not sure.”
“Buddy, I don’t know who you’re talking about. Can you tell me more?”
“She has a mark on her nose and a red dot on her pinky nail.”
This morning Jake awoke at 4:30am because a big green shiny-shamrock that dangles from the string on his ceiling fan fell down. He came into my room to let me know he was upset because the shamrock fell down. “I refuse to get up at this hour and hang it up. Wake me up at 7 and I’ll fix it,” Mommy Grrrrr.
So there he sat huffing, puffing and moaning in the hallway outside his door for 2 hours. I finally asked him what he was doing. “I’m too upset to go back in my museum room because it looks different now and I need pants!” Then the tears start.
So can you imagine seeing the world through Jake’s eyes?
While he cannot follow a point, he can literally see some fluorescent lights flash 60 times/SECOND. This used to reduce him to a pile on the floor. An arcade/or big televisions are the death of him. He doesn't even watch TV for this reason. The visual stimulation of being outside during a snow storm is paralyzing. I’ve had to pull his hat over his eyes and drag him back into the house because falling snow against the white background was too much. Bright sunshine in the summer causes headaches and wearing sunglasses is not an option. The sensation of them being on his face, impairing his super-sight, is too distracting.
Looking down tunnels, different light patterns that make shapes and spinning objects seem to be pleasing to Jake’s brain. He loves watching people walk in and out doorways, elevator doors and revolving doors. I remember asking to be seated in the back of the restaurant near the ceiling fans so he’d stay calm and happy and not disrupt the other patrons. Parades thrill him to no end, even though the noise violates his super-hearing.
Jake just climbed into my lap and asked me to search for videos on his IPod. “Can you find me videos of white and orange airplanes, like we took to Wisconsin when it was 2007, flying, that have the TV’s in the seats, the seats that have squares (plaid), 2 rows and 1 row on each side, seatbelt signs that light up and the little latch on the cabin door that clicks, 'ssshhhhttt chucha' when you close it.” Looks like I have my work cut out for me now.
Stay tuned for more sensory experiences to come – we’ve got many more to go!!!
Super-Powered Vision: A Blessing and A Curse
March 2, 2011
Many times the main characteristic of a child with Autism is the fact that they ‘seem to be in their own world’, or ‘checked out of reality’. One of the main reasons we say Jake has Super powers is because of his ridiculously heightened awareness of absolutely everything. His super-duper X-ray vision and unwavering perceptiveness has made living in this busy world, with this kiddo, a thrill ride that rivals reality.
It amazes and blesses all who witness his ability to spot things most people just miss. Last month, while staying on the beach with Grandma and Grandpa K., Jake was standing at the sea shore looking back at the beautiful condominium where we stayed. I was sure he was taking in the awesomely perfect geometric pattern the windows and balconies created until he pointed toward the top. “What’s that ball for?” he asked.
Really a little ball, where? I was scanning the building; various balconies loaded with toys and couldn’t see a ball. Then he told me to look on the very tip top. Up 13 floors sat a tiny, red flashing ball-shaped light atop the building. “Do you like that red light Jake?”
“Yes, it’s so COOOOOOOOL!” he said while excitedly dancing around in the sand. He was grinning from ear to ear as we shared his gaze; I think he was proud of himself.
I can remember some years back when we received a bouncy horse. While rearranging the play room, I found a tiny flag that belonged on the top of a very ornate Carousel toy stationed across the room. I popped the flag into place and never gave it another thought.
Knowing that changes totally throw Jake off course, we prepped him for a ‘very big surprise’ the day we revealed the bouncy horse. We set the horse in the middle of the doorway to his play room thinking he’ll never miss it and be so excited to climb aboard. As he entered the room, he eagerly scanned the room looking for his surprise while standing literally a foot from this giant new horse. We pointed out the horse and asked what he thought. “There’s a little flag on top the merry-go-round! You found it!” That toy was across the 18’ room. He about tripped over the horse, gave it a look like ‘what’s that doing there?’ and went to investigate the 1” flag.
On the same grand scale, I met Jake at the front door recently as the school bus dropped him off. My hair was messily piled on top of my head in a folded ponytail and I was wearing a new sweater. I was planning for fallout because I had on something new but never expected what really happened next. He came running off the bus yelling, “Mom, mom, mom did you get a new………. hairband?” I looked at him and answered yes but, “do you like my new shirt?”
“Nope, not so much.”
His eye sight has also played tricks on us. Since he has such an amazing skill, we thought he’d surely be able to help us out once in a while. “Hey, buddy, could you find the hot dogs in the freezer and take them out?”
“Sure,” he’d answer and head for the fridge. He would stand there, still to this day, with the door hanging open unable to spot the package. The most obvious things, even right in front of him, completely escape him if there are other things near/surrounding it.
We also thought he could read at the age of three because his photographic abilities allowed him to memorize each page. So we’d read a new book once, look at it the next night and he’d recite it back to us.
We’ve all learned to do just about everything in near darkness. There were several years where if we turned on certain lights in the house, or too many at one time, it would somehow trigger a tantrum. I can cook an entire dinner in complete darkness, and my oven light is broken! Slowly, we’ve outgrown some of this, but all of our switch plates do have dimmers for those now rare ‘off days’.
Now this ability to see every detail, and I mean every detail; can be a curse when it’s paired with lack of social skills.
“Mom, did you hurt your lip?”
“No buddy, that’s a cold sore, but thanks for pointing it out.”
“Mommy you have red dots on your face.”
“Thanks Jake, those are called pimples.”
“Does everybody get those pimples?” he’d continue while pushing on them. (Mommy gggrrr)
“Hey… that lady has a big tummy; it’s out of her pants! Look! Whoa! AAhhhahahah!” {This moment I pray the long awaited skill of pointing would disappear}
“Do all big girls have a tummy like that out of their pants?” he inquires while standing about 2 feet from the woman.
It’s not unusual for him to describe someone to me like this:
“Mom do you know Mrs. X at school?”
“No Jake, what does she look like?”
“I don’t know. Umm she’s tall like mommy and flowers on her toe nails.”
“Jake, is she beautiful brown like Jake or pink like mommy?”
“Uuummm I’m not sure.”
“Buddy, I don’t know who you’re talking about. Can you tell me more?”
“She has a mark on her nose and a red dot on her pinky nail.”
This morning Jake awoke at 4:30am because a big green shiny-shamrock that dangles from the string on his ceiling fan fell down. He came into my room to let me know he was upset because the shamrock fell down. “I refuse to get up at this hour and hang it up. Wake me up at 7 and I’ll fix it,” Mommy Grrrrr.
So there he sat huffing, puffing and moaning in the hallway outside his door for 2 hours. I finally asked him what he was doing. “I’m too upset to go back in my museum room because it looks different now and I need pants!” Then the tears start.
So can you imagine seeing the world through Jake’s eyes?
While he cannot follow a point, he can literally see some fluorescent lights flash 60 times/SECOND. This used to reduce him to a pile on the floor. An arcade/or big televisions are the death of him. He doesn't even watch TV for this reason. The visual stimulation of being outside during a snow storm is paralyzing. I’ve had to pull his hat over his eyes and drag him back into the house because falling snow against the white background was too much. Bright sunshine in the summer causes headaches and wearing sunglasses is not an option. The sensation of them being on his face, impairing his super-sight, is too distracting.
Looking down tunnels, different light patterns that make shapes and spinning objects seem to be pleasing to Jake’s brain. He loves watching people walk in and out doorways, elevator doors and revolving doors. I remember asking to be seated in the back of the restaurant near the ceiling fans so he’d stay calm and happy and not disrupt the other patrons. Parades thrill him to no end, even though the noise violates his super-hearing.
Jake just climbed into my lap and asked me to search for videos on his IPod. “Can you find me videos of white and orange airplanes, like we took to Wisconsin when it was 2007, flying, that have the TV’s in the seats, the seats that have squares (plaid), 2 rows and 1 row on each side, seatbelt signs that light up and the little latch on the cabin door that clicks, 'ssshhhhttt chucha' when you close it.” Looks like I have my work cut out for me now.
Stay tuned for more sensory experiences to come – we’ve got many more to go!!!
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The Day The Lid Stood Still
February 24, 2011
Day in and day out for years (yes, years) Jake would spin anything he could find. He could (and still can, given the chance) spin a box on its corner or fine china on its edge. On the kitchen floor, crouched down on one knee, he cocked his right arm up in the air behind his head then swiped down at the edge of the object. He would scoot around the floor following the lid so long that his left knee calloused as he discovered and experimented with centrifugal force. Chicken nuggets would catapult across the kitchen with enough speed to stick to cupboard doors.
Grapes really caught air, as did half-eaten Oreo cookies positioned just right.
It’s still a mystery to us what the spinning would do for Jake’s brain and sensory system. Some days it seemed to calm him, some days it wound him and other days he’d spin to escape life itself.
Countless hours were logged in front of the washing machine just waiting for the final cycle. We used to wedge the old top-loader open with a pen so he could watch that spin cycle. When we broke it, the answer to Jake’s prayers appeared.
The front-loader!! He loved that purchase so much that we used this to our advantage. Once he sorted the laundry by colors and loaded the washer he could sit on his little stool, perched in front of the door, and gaze at the flipping and flopping clothes. He discovered that putting sparkly stickers on the back wall of the washer made the event more exciting. Those stickers are still there today—I have no idea why water hasn’t made them peel off, but they’re there!
We tried to limit the spinning. Trading it for 100 jumps on the trampoline. “First jumping, then spinning, next jumping, then spinning, repeat.” He did well with this tactic but would still try to sneak and spin, like an addict in need of his next fix. He sought it at home, at school and even while visiting friends/family. We would enter a new home and I would say to the host/hostess, “We’ll be good for a little while but if more people come, we’ll need a lid. Hide the glass ones and you DON’T have any stickers.”
We used to wonder, when and if the spinning would ever stop. Would we have to pack frying pan lids into our suicases before every vacation? Will there always be little tops, plastic jacks and spinning coins in my purse? When will our super hero be able to cope with change without spinning to escape? Answers seemed far off.
At the urging of our occupational therapist and teachers, we started slowly and sneakily hiding the coveted lids. I packed them away one-by-one under the kitchen sink and held my breath until Jake was redirected to another activity.
Then the funniest, flukiest and divine thing happened. Jake was scooting around the floor behind the last remaining lid, when the plastic handle snapped off. I inhaled……. and didn’t exhale for what seemed like 2 hours, awaiting a full-blown melt. Jake calmly secured the screw with duct tape and started spinning again.
Sigh.
Jake was spinning with such force; the screw caught an edge in our linoleum floor and screwed itself right into the FLOOR BOARDS! And there it stood—on the screw-- frozen in the ready position. Jake tried and tried to spin that stuck lid, then the alligator tears started to flow. I carefully UNSCREWED the lid from the floor (Jake only spins in one direction) and as if he was being guided by a higher force, HE placed it the trash. Then brought me duct tape to fix the hole. We haven’t touched a lid since The Day The Lid Stood Still.
The Day The Lid Stood Still
February 24, 2011
Day in and day out for years (yes, years) Jake would spin anything he could find. He could (and still can, given the chance) spin a box on its corner or fine china on its edge. On the kitchen floor, crouched down on one knee, he cocked his right arm up in the air behind his head then swiped down at the edge of the object. He would scoot around the floor following the lid so long that his left knee calloused as he discovered and experimented with centrifugal force. Chicken nuggets would catapult across the kitchen with enough speed to stick to cupboard doors.
Grapes really caught air, as did half-eaten Oreo cookies positioned just right.
It’s still a mystery to us what the spinning would do for Jake’s brain and sensory system. Some days it seemed to calm him, some days it wound him and other days he’d spin to escape life itself.
Countless hours were logged in front of the washing machine just waiting for the final cycle. We used to wedge the old top-loader open with a pen so he could watch that spin cycle. When we broke it, the answer to Jake’s prayers appeared.
The front-loader!! He loved that purchase so much that we used this to our advantage. Once he sorted the laundry by colors and loaded the washer he could sit on his little stool, perched in front of the door, and gaze at the flipping and flopping clothes. He discovered that putting sparkly stickers on the back wall of the washer made the event more exciting. Those stickers are still there today—I have no idea why water hasn’t made them peel off, but they’re there!
We tried to limit the spinning. Trading it for 100 jumps on the trampoline. “First jumping, then spinning, next jumping, then spinning, repeat.” He did well with this tactic but would still try to sneak and spin, like an addict in need of his next fix. He sought it at home, at school and even while visiting friends/family. We would enter a new home and I would say to the host/hostess, “We’ll be good for a little while but if more people come, we’ll need a lid. Hide the glass ones and you DON’T have any stickers.”
We used to wonder, when and if the spinning would ever stop. Would we have to pack frying pan lids into our suicases before every vacation? Will there always be little tops, plastic jacks and spinning coins in my purse? When will our super hero be able to cope with change without spinning to escape? Answers seemed far off.
At the urging of our occupational therapist and teachers, we started slowly and sneakily hiding the coveted lids. I packed them away one-by-one under the kitchen sink and held my breath until Jake was redirected to another activity.
Then the funniest, flukiest and divine thing happened. Jake was scooting around the floor behind the last remaining lid, when the plastic handle snapped off. I inhaled……. and didn’t exhale for what seemed like 2 hours, awaiting a full-blown melt. Jake calmly secured the screw with duct tape and started spinning again.
Sigh.
Jake was spinning with such force; the screw caught an edge in our linoleum floor and screwed itself right into the FLOOR BOARDS! And there it stood—on the screw-- frozen in the ready position. Jake tried and tried to spin that stuck lid, then the alligator tears started to flow. I carefully UNSCREWED the lid from the floor (Jake only spins in one direction) and as if he was being guided by a higher force, HE placed it the trash. Then brought me duct tape to fix the hole. We haven’t touched a lid since The Day The Lid Stood Still.
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Little-known sounds of a sea-side vacation
February 21, 2011
Living with a child who can hear like a bat is an experience many parents with Blessed children can relate to, but if you’re like me, it takes a while to figure it out. When Jake was younger, the sensitive hearing displayed itself through temper tantrums, screams and physical attacks. His inability to verbalize exactly what was bothering him was frustrating for all of us. Now that he’s older, he can tell us what he hears, and mimics the sounds as they happen at twice the volume.
Entering the airport always provides a plethora of sensory overload but the most recent trip was especially interesting. This airport had a train! The underground transport carries passengers from terminal to gate but not without “doo-du, doo-du, doors are closing, please stand back.” One simple statement forces Jakes trembling hands to protect his ears from the computerized recording.
“Approaching Gate B, approaching gate B,” chirps the recording while Jake struggles to get his shaking legs moving toward the door and not dash through it at the same time.
“Zzzzttt zzzzttttt, that’s the sound of that X-ray machine back there when my hands were up in the air, right Mommy?” uuuummm I guess so. “Could you hear that buddy?” “Yeah, I did hear it. When I stood like the Statue of Liberty but with two hands up, Zzzzzt zzzzzzzt.” Apparently, the train lady wasn’t as cool as the X-ray sound.
Knowing the magnified power of those ears makes the actual ride in the sky a refresher course in redirection. Gotta be ready. When a Superhero’s powers don’t work properly, who does the frantic phenom turn to? “Mommy!!!!!” Jake forcefully grabs my index finger and jams it into his right ear. “My ear is stuffed up, my ear is stuffed up, Oh no, Oh no, I can’t hear!” I tell him to swallow. ”How can I swallow—I’m not eating anything?” I calmly tell him to yawn. “YYYAAAWWWNNNN”, he screams without accomplishing anything productive except chuckles and giggles from neighboring passengers. Soon we’ve reached cruising altitude and I’ve managed to divert his attention to a bag of Cheetos. Ears finally popped, Whew.
Plane wheels lower "eeeeerrrrrrttttttt", seatbelt signs go off "doo doo, doo doo", cell phones start ringing as we taxi – "dee de deed um, dee de deed um".
Bombardment!
Another new airport: the luggage elevator buzzes before delivering our baggage to the jetway, announcements in this airport were alright since there was no train anxiety, and we waited outdoors for grandma and grandpa to arrive where it was quiet and “a warm winter?”
To the beach condo we go!
The rhythmic sound of waves seems to calm Jake as we watch the cold water crash over our feet. He screams and runs from them, stoops down for a random shell (or tar ball) but no sounds can bother us now. All we hear are waves. A morning on the beach is set for tomorrow, relaxing kite-flying on the schedule.
Jake and grandpa prepare to head to the beach and Jake seemed flustered.
“What’s that noise? Is that the fire alarm, are we going to have a fire, if we have a fire we need to run really, really fast down the hall and down the stairs. Right mommy, right? Whats’s the beeping noise, is there a fire?” After several reassurances and redirection, they’re out the door with kites, extra string and sunglasses in hand. Grandma B and I search the condo for the mystery beeping. Cell phones: nope. Thermostat: nope. Alarm clock: nope. Moments later, Jake and grandpa are back. Jake reports there’s a fire while grandpa says, “He keeps pointing up at all the fire alarms?!” He’s pointing up, we’re wracking our brains. AH-HA… Grandpa, turn down your hearing aide. Beeping found! Grandpa shows our Superhero the device that magnifies sound for him and Jake equates to a microphone at church. Yup, mystery solved. To the beach we go. Kite flying didn’t last long, but that’s another blog!
Jake’s desire to go to the exercise room everyday was also a mystery. I knew he loved treadmills but the real reason became evident after he plopped down on the exercise bike. Jake rides the bike as fast as he can go, not for the sport of it, but for the sound of it! Pedal, pedal, pedal then take feet off… listen to the front wheel spin. “hhhhhhhuuuummmmmmmm, It sounds like the airplane just before the lights go on and the wheels go down and the engines slow down for a second but not long enough for us to fall out of the sky, hhhhhhuuuuuummmmm.” Well it sure does. That wheel is spinning so fast it does sound like a jet plane. As soon as it stops turning, Jake starts pumping again. Ready for take off!
Echoes in the indoor pool, people running in the upstairs condo, garbage truck heading down the strip a mile away, thank God for that sound spa!
Since having Jake in our lives, Chris and I have learned to LOOK for SOUND. We’re constantly amazed by Jake’s ability to memorize a sound and the feeling it caused him. The sound of a moon bounce motor makes him happy, the sound of the toothbrush at the dentist is like the beginning of that one Billy Joel song, and those talking trains are just plain stress. We’ve learned to think in advance and prepare him for new sounds. The cool thing is, since he has a vast library of sounds in his head, we can draw comparisons easier. Not many kids would understand or be calmed by, “don’t worry honey, you’ll be safe, it just sounds like grandpa’s hearing aide.”
Little-known sounds of a sea-side vacation
February 21, 2011
Living with a child who can hear like a bat is an experience many parents with Blessed children can relate to, but if you’re like me, it takes a while to figure it out. When Jake was younger, the sensitive hearing displayed itself through temper tantrums, screams and physical attacks. His inability to verbalize exactly what was bothering him was frustrating for all of us. Now that he’s older, he can tell us what he hears, and mimics the sounds as they happen at twice the volume.
Entering the airport always provides a plethora of sensory overload but the most recent trip was especially interesting. This airport had a train! The underground transport carries passengers from terminal to gate but not without “doo-du, doo-du, doors are closing, please stand back.” One simple statement forces Jakes trembling hands to protect his ears from the computerized recording.
“Approaching Gate B, approaching gate B,” chirps the recording while Jake struggles to get his shaking legs moving toward the door and not dash through it at the same time.
“Zzzzttt zzzzttttt, that’s the sound of that X-ray machine back there when my hands were up in the air, right Mommy?” uuuummm I guess so. “Could you hear that buddy?” “Yeah, I did hear it. When I stood like the Statue of Liberty but with two hands up, Zzzzzt zzzzzzzt.” Apparently, the train lady wasn’t as cool as the X-ray sound.
Knowing the magnified power of those ears makes the actual ride in the sky a refresher course in redirection. Gotta be ready. When a Superhero’s powers don’t work properly, who does the frantic phenom turn to? “Mommy!!!!!” Jake forcefully grabs my index finger and jams it into his right ear. “My ear is stuffed up, my ear is stuffed up, Oh no, Oh no, I can’t hear!” I tell him to swallow. ”How can I swallow—I’m not eating anything?” I calmly tell him to yawn. “YYYAAAWWWNNNN”, he screams without accomplishing anything productive except chuckles and giggles from neighboring passengers. Soon we’ve reached cruising altitude and I’ve managed to divert his attention to a bag of Cheetos. Ears finally popped, Whew.
Plane wheels lower "eeeeerrrrrrttttttt", seatbelt signs go off "doo doo, doo doo", cell phones start ringing as we taxi – "dee de deed um, dee de deed um".
Bombardment!
Another new airport: the luggage elevator buzzes before delivering our baggage to the jetway, announcements in this airport were alright since there was no train anxiety, and we waited outdoors for grandma and grandpa to arrive where it was quiet and “a warm winter?”
To the beach condo we go!
The rhythmic sound of waves seems to calm Jake as we watch the cold water crash over our feet. He screams and runs from them, stoops down for a random shell (or tar ball) but no sounds can bother us now. All we hear are waves. A morning on the beach is set for tomorrow, relaxing kite-flying on the schedule.
Jake and grandpa prepare to head to the beach and Jake seemed flustered.
“What’s that noise? Is that the fire alarm, are we going to have a fire, if we have a fire we need to run really, really fast down the hall and down the stairs. Right mommy, right? Whats’s the beeping noise, is there a fire?” After several reassurances and redirection, they’re out the door with kites, extra string and sunglasses in hand. Grandma B and I search the condo for the mystery beeping. Cell phones: nope. Thermostat: nope. Alarm clock: nope. Moments later, Jake and grandpa are back. Jake reports there’s a fire while grandpa says, “He keeps pointing up at all the fire alarms?!” He’s pointing up, we’re wracking our brains. AH-HA… Grandpa, turn down your hearing aide. Beeping found! Grandpa shows our Superhero the device that magnifies sound for him and Jake equates to a microphone at church. Yup, mystery solved. To the beach we go. Kite flying didn’t last long, but that’s another blog!
Jake’s desire to go to the exercise room everyday was also a mystery. I knew he loved treadmills but the real reason became evident after he plopped down on the exercise bike. Jake rides the bike as fast as he can go, not for the sport of it, but for the sound of it! Pedal, pedal, pedal then take feet off… listen to the front wheel spin. “hhhhhhhuuuummmmmmmm, It sounds like the airplane just before the lights go on and the wheels go down and the engines slow down for a second but not long enough for us to fall out of the sky, hhhhhhuuuuuummmmm.” Well it sure does. That wheel is spinning so fast it does sound like a jet plane. As soon as it stops turning, Jake starts pumping again. Ready for take off!
Echoes in the indoor pool, people running in the upstairs condo, garbage truck heading down the strip a mile away, thank God for that sound spa!
Since having Jake in our lives, Chris and I have learned to LOOK for SOUND. We’re constantly amazed by Jake’s ability to memorize a sound and the feeling it caused him. The sound of a moon bounce motor makes him happy, the sound of the toothbrush at the dentist is like the beginning of that one Billy Joel song, and those talking trains are just plain stress. We’ve learned to think in advance and prepare him for new sounds. The cool thing is, since he has a vast library of sounds in his head, we can draw comparisons easier. Not many kids would understand or be calmed by, “don’t worry honey, you’ll be safe, it just sounds like grandpa’s hearing aide.”
------------------------------------------------
Literal Minds
February 9, 2011
The brain: a hidden mass of lobes, veins, and arteries controlling our every blink, breath and body movement. When you see a diagram of a human brain, it’s mostly gray with sections shaded to highlight their different purposes. The frontal lobe is pink, the parietal lobe is green, and the occipital lobe is blue. But I swear, if I could see Jake’s brain, through the folds and lobes of God’s greatest creation, it would be just black and white.
Here are some recent examples of Jake’s concrete brain.
A) When given a small bust of Padre Pio: “Why is it just his head, where’s his body and he’s so tiny?”
B) Me: “Oh, Jake I cannot get your song out of my head – the tune is stuck in my head.” Jake: “Get it out of your head mommy, I like that song!”
C) While touring the Railroad Museum with Grandpa K/Bubbette: Me: “Wow, grandpa must be in heaven in there!” Jake: “What grandpa died, grandpa’s dead, when did grandpa go to heaven, he was just here?”
D) Me: “Stick a fork in me, I’m done!” Jake: goes to get a fork.
E) Me: “Jake, you do that again and my head’s going to explode!” Jake: “Then your brains will fly everywhere and there will be fire, and then what happens?”
F) I remember one of the first times we talked about flying. Jake thought we could actually jump up in the air and fly – no plane necessary.
G) A friend trying to teach Jake a knock-knock joke: M:” Knock Knock, Jake.” Jake: “Knock Knock.” M: “Who’s there?” Jake: “Who’s there? AAAHAHAHAHAHHAAHH!”
Jake’s view of the world has also taught us to appreciate the one unopened bud on the highest branch of the tree instead of the tree itself, the flag atop a hand painted 100+ year old carousel with a rip in the seam and the number of fire alarms on the ceiling of the Giant grocery store, as well as their haphazard placement.
Take a moment and try to walk in the shoes of a kid whose brain works in snapshots. See what happens if the picture changes from one day to the next. You’ll never see the world the same again, and you’ll be one step closer to understanding the World According to Jake.
Literal Minds
February 9, 2011
The brain: a hidden mass of lobes, veins, and arteries controlling our every blink, breath and body movement. When you see a diagram of a human brain, it’s mostly gray with sections shaded to highlight their different purposes. The frontal lobe is pink, the parietal lobe is green, and the occipital lobe is blue. But I swear, if I could see Jake’s brain, through the folds and lobes of God’s greatest creation, it would be just black and white.
Here are some recent examples of Jake’s concrete brain.
A) When given a small bust of Padre Pio: “Why is it just his head, where’s his body and he’s so tiny?”
B) Me: “Oh, Jake I cannot get your song out of my head – the tune is stuck in my head.” Jake: “Get it out of your head mommy, I like that song!”
C) While touring the Railroad Museum with Grandpa K/Bubbette: Me: “Wow, grandpa must be in heaven in there!” Jake: “What grandpa died, grandpa’s dead, when did grandpa go to heaven, he was just here?”
D) Me: “Stick a fork in me, I’m done!” Jake: goes to get a fork.
E) Me: “Jake, you do that again and my head’s going to explode!” Jake: “Then your brains will fly everywhere and there will be fire, and then what happens?”
F) I remember one of the first times we talked about flying. Jake thought we could actually jump up in the air and fly – no plane necessary.
G) A friend trying to teach Jake a knock-knock joke: M:” Knock Knock, Jake.” Jake: “Knock Knock.” M: “Who’s there?” Jake: “Who’s there? AAAHAHAHAHAHHAAHH!”
Jake’s view of the world has also taught us to appreciate the one unopened bud on the highest branch of the tree instead of the tree itself, the flag atop a hand painted 100+ year old carousel with a rip in the seam and the number of fire alarms on the ceiling of the Giant grocery store, as well as their haphazard placement.
Take a moment and try to walk in the shoes of a kid whose brain works in snapshots. See what happens if the picture changes from one day to the next. You’ll never see the world the same again, and you’ll be one step closer to understanding the World According to Jake.
