Public Perception (10)
Road Trip
4/10/16
My life is forever changed following a recent road trip. I now believe, miracles happen multiple times per minute, you just need to be aware.
Truth be told, I'm feeling older than my age after this 9-hour road trip. My eyelids get heavy sooner and my legs go numb after an hour of sitting. I became one of those people with the seat heaters on high while blasting the air conditioning to cool burning bones and my sporadic hot flashes!
This was no ordinary trip, however, it was a special hockey tournament to the historic Lake Placid Olympic Ice. Twenty six teams of players with diagnoses as varied as their skills on the ice, took over this Olympic Village. I stood with trembling hands and tears streaming down my cheeks during opening ceremonies and as the torch was lit. My heart melted when two players sang the American and Canadian National Anthems. My knees went weak when I saw my husband take to the miraculous ice from the 1980 olympic games. Heart beats in my throat nearly choked me as Chris scored and Jake flew to his feet to scream and cheer.
But there so many other little things that I jotted down as I lived on their spectrum for a weekend. While I work and fight for acceptance and inclusion in society as my real job, there's a lovely comfort that happens when you're living with hundreds of Super Hero families.
Little things become Huge things. Scores and penalties don't really matter, unless you're Jake and score repeatedly into your own net. :-). Behaviors go mostly unnoticed, unjudged yet unmistakeable.
Everyone is overwhelmed, overexcited and over loaded! It's beautiful to see these kids and adults stand up and spread their wings in the name of sport. No one judges.
Kids that have never left mom's side, felt safe enough to venture to the rooms alone. Counting door after door and facetiming the family downstairs. Jake was able to go to the restaurant, pick a table and choose his food independently because everyone understood that deciding between bacon, sausage, eggs or omelets are tough choices.
This trip for us, was so not about winning hockey, it was about succeeding at life. I want to share my list of observations and emotions from the weekend, in no particular order, but with huge kudos to the Crowne Plaza Hotel, at the TOP of the hill, in gorgeous Lake Placid, NY.
Beep. Click. Beep. Click. Beep. Click. Beep. Standing in the hallway, using the key to open and close the hotel room doors.
Don't plan on a quick elevator ride, really ever. I entered the elevator many times to find friends just riding up and down and never exiting, or an empty space with all the buttons pushed! Just smile and a giggle.
Don't bother getting dressed for breakfast, half of your guests will be dressed backwards or in jammies.. and no one cares.
Loaded plates drop onto the floor or back into the buffet. Food hits the floor and is promptly picked up and eaten. Many, many really big players were comforted and ate breakfast from mommy's lap on a chair with tiny legs. Sweet, amazing, and awesome. It's ok.
Have you ever seen a toe walker in hockey skates? They still toe-skate... those calves are huge! HA!
The order of buttons pushed upon entering an elevator: 1-2-3-4->< within seconds upon entering. Eyes forward, breath held. And yes, the close-doors button is pushed while people are still trying to enter! Huge smile and a snort.
The puck can land at the feet of a player and there's no guarantee that player will see it. Once they do see it, there's no guarantee they will take the puck the right way. If said player is Jake, he's a proximity player. He'll shoot at the goal that's closest!
Even if your teammate has the puck, it's fair game. Jake is also a puck magnet and must have it, if it's even close.
I cannot understand how the smell of hockey pads and hockey locker rooms doesn't offend these guys with such heightened senses. It triggers my gag-reflex from 20 feet away.
Pads are put on in the same order every time (this could go for all hockey players) but the skates can never be tight enough! I've peeled skin off my fingers trying trying to tie Jake's skates to his liking.
Being 6'5” tall makes it very hard to decipher what all those white dressings are in the salad bar. With no labeled spoons, you just need to bend in the middle, duck your head under the snot-glass and smell them. I'm with him, I was going to dip my pinky in, instead I stirred around and looked for lumps of blue cheese. I like his idea better!
My favorite story shows the amazing patience of our population and incredible training/experience of the Crowne Plaza employees. A little boy, clearly experiencing one of his first tastes of freedom, was at the drink station. He scooped the ice cubes, one at a time into his glass. The line for ice was building behind him, as he was beautifully oblivious.
We waited, we shared smiles, and just stood.
The waitress soon approached holding two full pitchers of apple juice in each hand. She too, stood.
The little boy's glass was now overflowing with ice and he decided it's time to add water. He grabbed the pitcher of water. He looked at his glass, then at the pitcher, then back to his glass. He's by now figured out that pouring water into this already-full glass, was not going to work. He was really thirsty, so he moved his face close to the pitcher and with the speed of a frog snatching a fly from the air, he started lapping the water out of the top of the service pitcher.
I held back my snorts of laughter until my eyeballs almost popped out, it was so awesome. He was solving a problem on his own. Everyone else in line, not even phased. The waitress, who's hands are now shaking, just watched. She could have screamed, she could have said “no” or “stop”. She could have touched him and tried to grab the pitcher, yet there was no eye roll, no sigh, no shoulders falling or looks of shock. It was as if she had seen it all before.
The boy finished his drink, put the pitcher down and walked away with his ice glass. The waitress set down her pitchers, swooped up the “used” pitcher before anyone could take a step towards the table and it was done. Just done.
I raced back to the table to report to Chris about what just happened and after I dried my tears from laughing, I decided the manager needed to know how professional that staff member was.
While telling her the story, the tears started flowing, ugly cry and everything, I was shocked, but clearly it impacted me. Chris finished my story about how the waitress could have made many choices at that moment, but she chose respect and that's huge. The manager said “well of course”.. and we said, “nope, that's not an of course kind of moment.” She replied, “well it is here!”
There was bonding and talk of Uber, driving, eating, partying, drinking alcohol, girls and family. Just like any other trip, for any other sports.
So many miracles happened this weekend in the miraculous city with an unmatched history for hockey families. I repeat again, these kids bring out the best in everyone they meet.
Thank you CAN/AM Hockey, Crowne Plaza and American Special Hockey Association. I will drive my family, with hot flashes, numb legs, heavy eye lids and way too much caffeine, 9 hours each way, to take part in this tournament any day of the week.
4/10/16
My life is forever changed following a recent road trip. I now believe, miracles happen multiple times per minute, you just need to be aware.
Truth be told, I'm feeling older than my age after this 9-hour road trip. My eyelids get heavy sooner and my legs go numb after an hour of sitting. I became one of those people with the seat heaters on high while blasting the air conditioning to cool burning bones and my sporadic hot flashes!
This was no ordinary trip, however, it was a special hockey tournament to the historic Lake Placid Olympic Ice. Twenty six teams of players with diagnoses as varied as their skills on the ice, took over this Olympic Village. I stood with trembling hands and tears streaming down my cheeks during opening ceremonies and as the torch was lit. My heart melted when two players sang the American and Canadian National Anthems. My knees went weak when I saw my husband take to the miraculous ice from the 1980 olympic games. Heart beats in my throat nearly choked me as Chris scored and Jake flew to his feet to scream and cheer.
But there so many other little things that I jotted down as I lived on their spectrum for a weekend. While I work and fight for acceptance and inclusion in society as my real job, there's a lovely comfort that happens when you're living with hundreds of Super Hero families.
Little things become Huge things. Scores and penalties don't really matter, unless you're Jake and score repeatedly into your own net. :-). Behaviors go mostly unnoticed, unjudged yet unmistakeable.
Everyone is overwhelmed, overexcited and over loaded! It's beautiful to see these kids and adults stand up and spread their wings in the name of sport. No one judges.
Kids that have never left mom's side, felt safe enough to venture to the rooms alone. Counting door after door and facetiming the family downstairs. Jake was able to go to the restaurant, pick a table and choose his food independently because everyone understood that deciding between bacon, sausage, eggs or omelets are tough choices.
This trip for us, was so not about winning hockey, it was about succeeding at life. I want to share my list of observations and emotions from the weekend, in no particular order, but with huge kudos to the Crowne Plaza Hotel, at the TOP of the hill, in gorgeous Lake Placid, NY.
Beep. Click. Beep. Click. Beep. Click. Beep. Standing in the hallway, using the key to open and close the hotel room doors.
Don't plan on a quick elevator ride, really ever. I entered the elevator many times to find friends just riding up and down and never exiting, or an empty space with all the buttons pushed! Just smile and a giggle.
Don't bother getting dressed for breakfast, half of your guests will be dressed backwards or in jammies.. and no one cares.
Loaded plates drop onto the floor or back into the buffet. Food hits the floor and is promptly picked up and eaten. Many, many really big players were comforted and ate breakfast from mommy's lap on a chair with tiny legs. Sweet, amazing, and awesome. It's ok.
Have you ever seen a toe walker in hockey skates? They still toe-skate... those calves are huge! HA!
The order of buttons pushed upon entering an elevator: 1-2-3-4->< within seconds upon entering. Eyes forward, breath held. And yes, the close-doors button is pushed while people are still trying to enter! Huge smile and a snort.
The puck can land at the feet of a player and there's no guarantee that player will see it. Once they do see it, there's no guarantee they will take the puck the right way. If said player is Jake, he's a proximity player. He'll shoot at the goal that's closest!
Even if your teammate has the puck, it's fair game. Jake is also a puck magnet and must have it, if it's even close.
I cannot understand how the smell of hockey pads and hockey locker rooms doesn't offend these guys with such heightened senses. It triggers my gag-reflex from 20 feet away.
Pads are put on in the same order every time (this could go for all hockey players) but the skates can never be tight enough! I've peeled skin off my fingers trying trying to tie Jake's skates to his liking.
Being 6'5” tall makes it very hard to decipher what all those white dressings are in the salad bar. With no labeled spoons, you just need to bend in the middle, duck your head under the snot-glass and smell them. I'm with him, I was going to dip my pinky in, instead I stirred around and looked for lumps of blue cheese. I like his idea better!
My favorite story shows the amazing patience of our population and incredible training/experience of the Crowne Plaza employees. A little boy, clearly experiencing one of his first tastes of freedom, was at the drink station. He scooped the ice cubes, one at a time into his glass. The line for ice was building behind him, as he was beautifully oblivious.
We waited, we shared smiles, and just stood.
The waitress soon approached holding two full pitchers of apple juice in each hand. She too, stood.
The little boy's glass was now overflowing with ice and he decided it's time to add water. He grabbed the pitcher of water. He looked at his glass, then at the pitcher, then back to his glass. He's by now figured out that pouring water into this already-full glass, was not going to work. He was really thirsty, so he moved his face close to the pitcher and with the speed of a frog snatching a fly from the air, he started lapping the water out of the top of the service pitcher.
I held back my snorts of laughter until my eyeballs almost popped out, it was so awesome. He was solving a problem on his own. Everyone else in line, not even phased. The waitress, who's hands are now shaking, just watched. She could have screamed, she could have said “no” or “stop”. She could have touched him and tried to grab the pitcher, yet there was no eye roll, no sigh, no shoulders falling or looks of shock. It was as if she had seen it all before.
The boy finished his drink, put the pitcher down and walked away with his ice glass. The waitress set down her pitchers, swooped up the “used” pitcher before anyone could take a step towards the table and it was done. Just done.
I raced back to the table to report to Chris about what just happened and after I dried my tears from laughing, I decided the manager needed to know how professional that staff member was.
While telling her the story, the tears started flowing, ugly cry and everything, I was shocked, but clearly it impacted me. Chris finished my story about how the waitress could have made many choices at that moment, but she chose respect and that's huge. The manager said “well of course”.. and we said, “nope, that's not an of course kind of moment.” She replied, “well it is here!”
There was bonding and talk of Uber, driving, eating, partying, drinking alcohol, girls and family. Just like any other trip, for any other sports.
So many miracles happened this weekend in the miraculous city with an unmatched history for hockey families. I repeat again, these kids bring out the best in everyone they meet.
Thank you CAN/AM Hockey, Crowne Plaza and American Special Hockey Association. I will drive my family, with hot flashes, numb legs, heavy eye lids and way too much caffeine, 9 hours each way, to take part in this tournament any day of the week.
Educating the "Educated"
June 24, 2015
So I had an experience today that took my breath away at the time, now it has me huffing and puffing mad.
I showed up early for my dermatology appointment. Sitting hesitantly in the waiting room, I was preparing myself to deal with this doctor who has always given me the heeby-jeeby creeps, but comes with great credentials so I tolerated.
I was called back to his room by a lovely, older lady who reassured me that getting a pre-cancer spot burned/froze/zapped off the bridge of my nose is guaranteed to make me cry because it's so close to my eyes! "There's no avoiding the tears on this one, here are the tissues. It'll only burn for a minute or so."
She was nice enough and as I waited, I worked on my calming breathing, and taking final glimpse at my sorta normal-looking-freckled-long-Belgian-nose in the mirror.
The doctor entered the room. I told him I was a huge whimp and there wasn't nearly enough skin on the bridge of my nose to be zapping any layers off. He laughed then we started making small talk as he cleaned his fancy head-magnifying-glass thingy. He grabbed the can of cold stuff and wiped it clean. I noticed his shirt was a very nice golf shirt from a pricey and exclusive country club in Potomac. He told me a story about golfing in 110 degrees yesterday and I told him that Jake and I just had the honor of going to Congressional Country Club. "We were part of the Els for Autism program where, Ernie Els' "people" go around and give free golf lessons to kids with autism," I explained. I went on to tell him we had about 30 kids and adults with autism out on the greens. We did our warm up stretches and twists, then met with the coaches. As soon as we dispersed to our specific greens, the weather horn sounded. I told him how upset the kids/adults were about the loud blast and then not getting their mini golf lesson... to which the doctor, did I mention DOCTOR, as in educated person, said callously, "Well it's not like it matters, the kids were all Autistic! ha haha!"
I was stunned, pissed, wanted to climb up on the examining table and scream at him, but he was holding that giant can of freezy/burny stuff about to aim it right between my eyes! All I could muster was, "Many of kids, mine included, were extremely disappointed!!!"
He just gave me a shoulder-shrug-snorkel-chucked and I could feel myself turning red and blotchy with rage.
I don't need to list how many layers of wrong that SUPPOSEDLY-EDUCATED-DOCTOR was, nor do I need to list the reasons I will never go back there again. I thought about it all day and realized part of this problem could be me.
I guess, I, along with many others, assume those in white coats are sensitive, educated and compassionate. We expect a certain level of respect, kind treatment and nerve-calming attitude, but we cannot. I'm learning that no matter how many initials come after or what title comes before a person's name, they still need to be educated.
I was kicking myself in the parking lot for not standing up more for our amazing super heroes. I said what I could at that fear-filled-anxious time and wanted to go back in. I wanted to post on facebook for asd parents never to go to his practice, but that's not teaching him anything either. That would just be my own little temper tantrum.
We must keep taking every opportunity, no matter where we are, to teach and educate everyone on this planet until our kids/adult super heroes are accepted and valued as members of the community.
Thanks for listening.
I'm still mad.
June 24, 2015
So I had an experience today that took my breath away at the time, now it has me huffing and puffing mad.
I showed up early for my dermatology appointment. Sitting hesitantly in the waiting room, I was preparing myself to deal with this doctor who has always given me the heeby-jeeby creeps, but comes with great credentials so I tolerated.
I was called back to his room by a lovely, older lady who reassured me that getting a pre-cancer spot burned/froze/zapped off the bridge of my nose is guaranteed to make me cry because it's so close to my eyes! "There's no avoiding the tears on this one, here are the tissues. It'll only burn for a minute or so."
She was nice enough and as I waited, I worked on my calming breathing, and taking final glimpse at my sorta normal-looking-freckled-long-Belgian-nose in the mirror.
The doctor entered the room. I told him I was a huge whimp and there wasn't nearly enough skin on the bridge of my nose to be zapping any layers off. He laughed then we started making small talk as he cleaned his fancy head-magnifying-glass thingy. He grabbed the can of cold stuff and wiped it clean. I noticed his shirt was a very nice golf shirt from a pricey and exclusive country club in Potomac. He told me a story about golfing in 110 degrees yesterday and I told him that Jake and I just had the honor of going to Congressional Country Club. "We were part of the Els for Autism program where, Ernie Els' "people" go around and give free golf lessons to kids with autism," I explained. I went on to tell him we had about 30 kids and adults with autism out on the greens. We did our warm up stretches and twists, then met with the coaches. As soon as we dispersed to our specific greens, the weather horn sounded. I told him how upset the kids/adults were about the loud blast and then not getting their mini golf lesson... to which the doctor, did I mention DOCTOR, as in educated person, said callously, "Well it's not like it matters, the kids were all Autistic! ha haha!"
I was stunned, pissed, wanted to climb up on the examining table and scream at him, but he was holding that giant can of freezy/burny stuff about to aim it right between my eyes! All I could muster was, "Many of kids, mine included, were extremely disappointed!!!"
He just gave me a shoulder-shrug-snorkel-chucked and I could feel myself turning red and blotchy with rage.
I don't need to list how many layers of wrong that SUPPOSEDLY-EDUCATED-DOCTOR was, nor do I need to list the reasons I will never go back there again. I thought about it all day and realized part of this problem could be me.
I guess, I, along with many others, assume those in white coats are sensitive, educated and compassionate. We expect a certain level of respect, kind treatment and nerve-calming attitude, but we cannot. I'm learning that no matter how many initials come after or what title comes before a person's name, they still need to be educated.
I was kicking myself in the parking lot for not standing up more for our amazing super heroes. I said what I could at that fear-filled-anxious time and wanted to go back in. I wanted to post on facebook for asd parents never to go to his practice, but that's not teaching him anything either. That would just be my own little temper tantrum.
We must keep taking every opportunity, no matter where we are, to teach and educate everyone on this planet until our kids/adult super heroes are accepted and valued as members of the community.
Thanks for listening.
I'm still mad.
Rules of Engagement
June 26, 2013
One of the hardest things parents of social Super Heroes need to do is teach the difference between appropriate and inappropriate public behaviors.
Jake still wants to talk to anyone, anytime, anyplace. That includes the folks who live in the park by the church and are sound asleep as we pass, the businessmen in suits walking the DC sidewalks frantically heading to work, as well as the friends who work the Metro stations and don’t like to talk to anyone.
But teaching him which adult is safe to talk to and what is OK to say to them is a challenge. Chris and I are very social and will talk to the clerk in the store. But that sends a mixed message to Jake because that person is technically a stranger. We don’t know if strangers are safe adults.
How many times have I heard after saying hello to a clerk or someone who happens to park next to us at an event, “is that stranger now an acquaintance?” “Can I talk to that man/lady?”
Our blended family has always drawn a lot of eyes in public and many of those looks have been critical. So early-on we taught Jake to say, “Hi pretty lady or nice man!” whenever we or he sensed someone was watching us a little too closely. This usually disarmed the people and they were rendered speechless.
But once he starts a conversation, his quirky and cute social interaction makes a lasting impact. Apparently longer than I realized.
Three years ago, I remember we stalked any worker-type people in our neighborhood. We’d stare at their big trucks, chase the garbage man, watch them work and exchange 'good mornings' while chatting about the weather. Some of them would work here for weeks at a time, others would come and go.
Never did I think I’d see these men again. C’mon there are thousands of construction / repair crews in this area.
Fast forward this week: another group of construction trucks is back! They are finally finishing up the sidewalk repairs they started years ago. The big trucks, the bobcat, the diggers and the workers are everywhere.
So I shouldn’t be surprised at all the stares we received from the work crew when we were going out for our run yesterday. As we left the house, I could feel the stares. I was slightly grossed out by the long looks from the men all dressed in orange and yellow until…
“HEY JAKE, HOW YOU DOIN' MAN?” yells one of the workers waving wildly from the sidewalk.
Are you kidding me? Here I thought they were looking at the jiggly pastey-white mom who was about to go jogging with the foofy dog and brown kid… but instead they actually remembered my kid by name.
All the workers, six of them, come over and encircled Jake. Hi-5’s all around.
“How ya doin’?”
“What’s new?”
“How’s school man?”
“Boy you’re tall now – Ms. Lisa (a worker from years back) asked about you!”
Now that’s what I call a lasting impact!
THREE. YEARS. FOLKS.
Unbelievable.
Next Jake led the conversation about their project, how long they’d be here, why they were fixing the sidewalk and if he could watch them later.
I stood quietly on the curb with my foofy dog and pastey-white legs beaming with pride.
The lesson for me here is to always take the opportunity to talk politely or encourage interaction with all types of people. The time you spend teaching proper social interaction will pay off down the road. Even if it’s just a wave or a smile.
Respect for all people goes a long way and needs to be taught.
Who knows, maybe Jake will be looking for a construction job one day!
------------------------------------------------------
June 26, 2013
One of the hardest things parents of social Super Heroes need to do is teach the difference between appropriate and inappropriate public behaviors.
Jake still wants to talk to anyone, anytime, anyplace. That includes the folks who live in the park by the church and are sound asleep as we pass, the businessmen in suits walking the DC sidewalks frantically heading to work, as well as the friends who work the Metro stations and don’t like to talk to anyone.
But teaching him which adult is safe to talk to and what is OK to say to them is a challenge. Chris and I are very social and will talk to the clerk in the store. But that sends a mixed message to Jake because that person is technically a stranger. We don’t know if strangers are safe adults.
How many times have I heard after saying hello to a clerk or someone who happens to park next to us at an event, “is that stranger now an acquaintance?” “Can I talk to that man/lady?”
Our blended family has always drawn a lot of eyes in public and many of those looks have been critical. So early-on we taught Jake to say, “Hi pretty lady or nice man!” whenever we or he sensed someone was watching us a little too closely. This usually disarmed the people and they were rendered speechless.
But once he starts a conversation, his quirky and cute social interaction makes a lasting impact. Apparently longer than I realized.
Three years ago, I remember we stalked any worker-type people in our neighborhood. We’d stare at their big trucks, chase the garbage man, watch them work and exchange 'good mornings' while chatting about the weather. Some of them would work here for weeks at a time, others would come and go.
Never did I think I’d see these men again. C’mon there are thousands of construction / repair crews in this area.
Fast forward this week: another group of construction trucks is back! They are finally finishing up the sidewalk repairs they started years ago. The big trucks, the bobcat, the diggers and the workers are everywhere.
So I shouldn’t be surprised at all the stares we received from the work crew when we were going out for our run yesterday. As we left the house, I could feel the stares. I was slightly grossed out by the long looks from the men all dressed in orange and yellow until…
“HEY JAKE, HOW YOU DOIN' MAN?” yells one of the workers waving wildly from the sidewalk.
Are you kidding me? Here I thought they were looking at the jiggly pastey-white mom who was about to go jogging with the foofy dog and brown kid… but instead they actually remembered my kid by name.
All the workers, six of them, come over and encircled Jake. Hi-5’s all around.
“How ya doin’?”
“What’s new?”
“How’s school man?”
“Boy you’re tall now – Ms. Lisa (a worker from years back) asked about you!”
Now that’s what I call a lasting impact!
THREE. YEARS. FOLKS.
Unbelievable.
Next Jake led the conversation about their project, how long they’d be here, why they were fixing the sidewalk and if he could watch them later.
I stood quietly on the curb with my foofy dog and pastey-white legs beaming with pride.
The lesson for me here is to always take the opportunity to talk politely or encourage interaction with all types of people. The time you spend teaching proper social interaction will pay off down the road. Even if it’s just a wave or a smile.
Respect for all people goes a long way and needs to be taught.
Who knows, maybe Jake will be looking for a construction job one day!
------------------------------------------------------
TEN Years on the Spectrum
September 17, 2012
When I was a kid, I never thought I’d get married, much less raise a child, even lesser adopt a special needs African child! The biggest thing I’ve learned is that I’m much stronger than I ever dreamed I would be. I know I haven’t made this journey alone, God is placing my feet along a path, surprising me with every step.
Some footprints are tip-toe… others deeply imprinted full-foot prints with unidentifiable traction marks made when I’m trudging with the weight of the world on my shoulders… while some have the full body imprints next to them from when I’ve fallen to my knees. I decided to compile the lessons I’ve learned along the ASD highway on Jake’s 10th birthday! No particular order, except how they pop into my bleary brain.
It’s not what you know, but how you know it.
Your gut is usually right.
Intellect has nothing to do with how old or big you are.
Say “please” all the time.
Every child just wants to be loved, and love should be the root of our behavior.
But, every child’s behavior has a purpose. If you don’t know it at the time, it will hit you later… much later.
Nature vs. Nurture is fascinating.
Staying calm in the face of adversity is key.
Super heroes have a 7th sense and it’s the ability to feel stress/tension in the air.
They may not be able to speak but they have definite opinions and understand tons.
A grunt can speak volumes.
I love smart people!
Your brain will never rest.
It’s okay to stim.
Exercise will get you through the day.
Frustration looks and sounds loud.
Sesame Street ROCKS!
My patience for ignorance and judgment is very low.
I have been speechless many times! Believe it.
Wine. Wine. Wine.
Planning to prevent disaster will backfire and is unhealthy.
There are some things I will never know or understand about our son.
His eyes can bore a hole into my heart.
There are a lot of mean people that don’t even want to try to understand.
Sleep. Sleep. Sleep.
Many try, but still can’t stop judging.
Fair rides provide sensory thrills of a lifetime.
You cannot discipline autism.
You cannot punish behavior caused from overstimulation.
Not every ASD kid wants a dog.
People that stare need to be educated and then punched or vice versa.
As much as I try to not feel the looks, I do.
The bigger the kid, the more painful the looks.
Help any family that you can that is struggling with any different-ability.
You know they just need a reassuring smile or a “you’re doing a great job”.
You never know what goes on inside four walls unless they are your four walls.
If you build your wall high enough, you’re passing up love and support.
Put your heart out there and love, people will respond in kind.
Be the example for your kiddo. They don’t miss a thing.
Dolls teach life-lessons on many levels. It’s OK!
Do you like when your food touches other food? Really?
Think like you have autism too.
Patience. Patience. Patience.
There isn’t ever a good time to raise your voice, unless imminent danger.
Never a reason to hit.
Your child is afraid, a lot!
Fight like the devil to protect them.
Racism is real and now and very sad.
We saved our son’s life when we adopted him.
Spectrum parents are really funny. Biological and not.
Keep your hands to yourself.
Educate others.
Wine. Wine. Wine.
Go slow and slower when teaching a child on the spectrum.
The sound of one’s voice can move me to tears, and has.
The sound of God’s voice stops my breath.
Listen to your heart.
Chewing is necessary.
Laundry, clean or dirty, lives in the laundry room. Why aren’t there dressers in there?
A little pee on the floor is really not a big deal.
Toothpaste is a great bonding agent.
Poop a fabulous medium for painting. (apparently)
Loose teeth are intolerable.
Waiting is awful.
Living through chemicals is ok and may be necessary.
Attention is attention, use wisely.
Learn to ignore. Really, learn to ignore.
Patience. Patience. Patience.
Bacos and croutons make a bag of lettuce a salad.
Never assume.
Music is a great calming agent.
Stranger danger is real.
Public bathrooms hold disaster.
Teaching your kid not to trust is backwards.
Weight is great too, unless it’s on my hips.
Showers are a great meltdown buster.
Try everything once.
Eating is hard.
Loving is easy.
Pray, pray, pray.
September 17, 2012
When I was a kid, I never thought I’d get married, much less raise a child, even lesser adopt a special needs African child! The biggest thing I’ve learned is that I’m much stronger than I ever dreamed I would be. I know I haven’t made this journey alone, God is placing my feet along a path, surprising me with every step.
Some footprints are tip-toe… others deeply imprinted full-foot prints with unidentifiable traction marks made when I’m trudging with the weight of the world on my shoulders… while some have the full body imprints next to them from when I’ve fallen to my knees. I decided to compile the lessons I’ve learned along the ASD highway on Jake’s 10th birthday! No particular order, except how they pop into my bleary brain.
It’s not what you know, but how you know it.
Your gut is usually right.
Intellect has nothing to do with how old or big you are.
Say “please” all the time.
Every child just wants to be loved, and love should be the root of our behavior.
But, every child’s behavior has a purpose. If you don’t know it at the time, it will hit you later… much later.
Nature vs. Nurture is fascinating.
Staying calm in the face of adversity is key.
Super heroes have a 7th sense and it’s the ability to feel stress/tension in the air.
They may not be able to speak but they have definite opinions and understand tons.
A grunt can speak volumes.
I love smart people!
Your brain will never rest.
It’s okay to stim.
Exercise will get you through the day.
Frustration looks and sounds loud.
Sesame Street ROCKS!
My patience for ignorance and judgment is very low.
I have been speechless many times! Believe it.
Wine. Wine. Wine.
Planning to prevent disaster will backfire and is unhealthy.
There are some things I will never know or understand about our son.
His eyes can bore a hole into my heart.
There are a lot of mean people that don’t even want to try to understand.
Sleep. Sleep. Sleep.
Many try, but still can’t stop judging.
Fair rides provide sensory thrills of a lifetime.
You cannot discipline autism.
You cannot punish behavior caused from overstimulation.
Not every ASD kid wants a dog.
People that stare need to be educated and then punched or vice versa.
As much as I try to not feel the looks, I do.
The bigger the kid, the more painful the looks.
Help any family that you can that is struggling with any different-ability.
You know they just need a reassuring smile or a “you’re doing a great job”.
You never know what goes on inside four walls unless they are your four walls.
If you build your wall high enough, you’re passing up love and support.
Put your heart out there and love, people will respond in kind.
Be the example for your kiddo. They don’t miss a thing.
Dolls teach life-lessons on many levels. It’s OK!
Do you like when your food touches other food? Really?
Think like you have autism too.
Patience. Patience. Patience.
There isn’t ever a good time to raise your voice, unless imminent danger.
Never a reason to hit.
Your child is afraid, a lot!
Fight like the devil to protect them.
Racism is real and now and very sad.
We saved our son’s life when we adopted him.
Spectrum parents are really funny. Biological and not.
Keep your hands to yourself.
Educate others.
Wine. Wine. Wine.
Go slow and slower when teaching a child on the spectrum.
The sound of one’s voice can move me to tears, and has.
The sound of God’s voice stops my breath.
Listen to your heart.
Chewing is necessary.
Laundry, clean or dirty, lives in the laundry room. Why aren’t there dressers in there?
A little pee on the floor is really not a big deal.
Toothpaste is a great bonding agent.
Poop a fabulous medium for painting. (apparently)
Loose teeth are intolerable.
Waiting is awful.
Living through chemicals is ok and may be necessary.
Attention is attention, use wisely.
Learn to ignore. Really, learn to ignore.
Patience. Patience. Patience.
Bacos and croutons make a bag of lettuce a salad.
Never assume.
Music is a great calming agent.
Stranger danger is real.
Public bathrooms hold disaster.
Teaching your kid not to trust is backwards.
Weight is great too, unless it’s on my hips.
Showers are a great meltdown buster.
Try everything once.
Eating is hard.
Loving is easy.
Pray, pray, pray.
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Shattering Stereotypes
July 2, 2012
It starts in the very beginning.
Friends and family trudge to the hospital or your home armed with gifts perfectly befitting the gender of your new baby. If your child is a boy; the trucks, cars and blue blankets roll in. If you have a girl; dolls, frilly stuffed animals and pink blankies overflow.
The stereotypes are everywhere; and are hard to escape. Have you ever given a new baby boy a doll? Or a beautiful little girl, a recycling truck complete with garbage cans and real-life noises? Imagine the judgment!
I just turned on Sesame Street and Zoe was inviting Baby Bear and Telly Monster to a tea party.
“Tea parties are for girls, Zoe!” exclaimed Baby Bear.
“Boys can have tea parties too!” said Zoe.
“Well, this bear does not dress up in a dress and sip tea,” said BB.
Then, much to my surprise Jake chimed in. “If this wasn’t on Sesame Street they would be in trouble with the police for not being nice!”
The show progressed with BB and Telly imagining themselves at a tea party. As the two characters appeared in dresses lining up tea cups Jake was completely engaged and soaking up every word.
“Momma Bear is going to be so proud of him!” Our Super Hero said matter-of-factly with a slight twinge of ‘right mommy?’
Zoe quickly explained that not all tea parties are like what the boys were imagining. In fact, hers wasn’t tea, but the letter “T”. So they Twisted, Turned and Tackled each other. To that Jake proclaimed, “That tea party does not look like very much fun!” HA
The other day, when I came downstairs and Jake had spontaneously set up the kitchen chairs to have an “ice cream party” with two Cabbage Patch dolls, I reinforced it by taking pictures and telling him how nicely he was behaving with his friends. I have never really encouraged doll play for Jake, I don’t even remember playing with dolls when I was little. He sparked an interest all on his own. YAY milestone!
We’ve waited so long for him to have an imagination and be able to pretend, I’m not going to discourage this stereo typically girly behavior. Judging helps no one and only hurts. He’s learning how to nurture, understand other’s feelings, take turns, and be a good friend. Each one of those things is very difficult for our very self-centered Super Heroes.
Recently, Jake saved all his earned money (behavior points at home) so he could buy a set of interactive triplet babies. He is amazingly appropriate with them and very gentle. As soon as they arrived he ran in the house and kissed each one on the cheek and professed his love. He tickles them to hear them gurgle and coo.
He named them (Eliza, Joe and Cute Little Daisy) and requested, “We need to make them a crib to sleep in!” Thank goodness I kept the big box they arrived in. We made a bed for them by padding it with a quilt and covering them in blankets.
Each morning he wakes them up, carries them downstairs, gives each one a morning kiss, and feeds them their bottles. We’ve brought them to the doctor’s appointments with us and he proudly brags about each one.
“Cute Little Daisy burps a lot, Eliza sleeps and Joe will say MaMa if you shake him,” he tells each doctor. Then proudly explains he bought them with his own money. The doctors get it and he is again lifted up.
Thank goodness Chris understands the importance of these developmental milestones too. Daddy tolerates and will take part in any doll play pretending Jake invites us in to. He just scratches his head and reminds me Jake is way too young to be a single father of 3!
The babies have made the rounds with his neighborhood friends, all “neurotypicals,” and they’ve all been surprisingly supportive. He’s validated again and not judged. His next earn reward is a “baby buggy” to drive them around in… it beats the John Deere wagon he used to bring two other dolls to the playground last week!
The Cabbage patch girls, Patsy and Tracey, were pushed in swings, rode in the wagon and watched Jake fly “super-duper high” on the swings. Our 5’ tall 9-year-old carefully took them from their posh wagon and placed them on a bench in the shade to watch him, so they “don’t get sun-redded like mommy!”
After riding our bike 2 miles, playing catch with a ball in the pool for 90 minutes, chasing trains, stopping to look at a dump truck and a tractor-trailer rig, we came home this afternoon and played dress-up/make-believe with a new book of paper dolls.
Open your minds and shatter the stereotypes friends – a little make believe is good for ALL children.
Shattering Stereotypes
July 2, 2012
It starts in the very beginning.
Friends and family trudge to the hospital or your home armed with gifts perfectly befitting the gender of your new baby. If your child is a boy; the trucks, cars and blue blankets roll in. If you have a girl; dolls, frilly stuffed animals and pink blankies overflow.
The stereotypes are everywhere; and are hard to escape. Have you ever given a new baby boy a doll? Or a beautiful little girl, a recycling truck complete with garbage cans and real-life noises? Imagine the judgment!
I just turned on Sesame Street and Zoe was inviting Baby Bear and Telly Monster to a tea party.
“Tea parties are for girls, Zoe!” exclaimed Baby Bear.
“Boys can have tea parties too!” said Zoe.
“Well, this bear does not dress up in a dress and sip tea,” said BB.
Then, much to my surprise Jake chimed in. “If this wasn’t on Sesame Street they would be in trouble with the police for not being nice!”
The show progressed with BB and Telly imagining themselves at a tea party. As the two characters appeared in dresses lining up tea cups Jake was completely engaged and soaking up every word.
“Momma Bear is going to be so proud of him!” Our Super Hero said matter-of-factly with a slight twinge of ‘right mommy?’
Zoe quickly explained that not all tea parties are like what the boys were imagining. In fact, hers wasn’t tea, but the letter “T”. So they Twisted, Turned and Tackled each other. To that Jake proclaimed, “That tea party does not look like very much fun!” HA
The other day, when I came downstairs and Jake had spontaneously set up the kitchen chairs to have an “ice cream party” with two Cabbage Patch dolls, I reinforced it by taking pictures and telling him how nicely he was behaving with his friends. I have never really encouraged doll play for Jake, I don’t even remember playing with dolls when I was little. He sparked an interest all on his own. YAY milestone!
We’ve waited so long for him to have an imagination and be able to pretend, I’m not going to discourage this stereo typically girly behavior. Judging helps no one and only hurts. He’s learning how to nurture, understand other’s feelings, take turns, and be a good friend. Each one of those things is very difficult for our very self-centered Super Heroes.
Recently, Jake saved all his earned money (behavior points at home) so he could buy a set of interactive triplet babies. He is amazingly appropriate with them and very gentle. As soon as they arrived he ran in the house and kissed each one on the cheek and professed his love. He tickles them to hear them gurgle and coo.
He named them (Eliza, Joe and Cute Little Daisy) and requested, “We need to make them a crib to sleep in!” Thank goodness I kept the big box they arrived in. We made a bed for them by padding it with a quilt and covering them in blankets.
Each morning he wakes them up, carries them downstairs, gives each one a morning kiss, and feeds them their bottles. We’ve brought them to the doctor’s appointments with us and he proudly brags about each one.
“Cute Little Daisy burps a lot, Eliza sleeps and Joe will say MaMa if you shake him,” he tells each doctor. Then proudly explains he bought them with his own money. The doctors get it and he is again lifted up.
Thank goodness Chris understands the importance of these developmental milestones too. Daddy tolerates and will take part in any doll play pretending Jake invites us in to. He just scratches his head and reminds me Jake is way too young to be a single father of 3!
The babies have made the rounds with his neighborhood friends, all “neurotypicals,” and they’ve all been surprisingly supportive. He’s validated again and not judged. His next earn reward is a “baby buggy” to drive them around in… it beats the John Deere wagon he used to bring two other dolls to the playground last week!
The Cabbage patch girls, Patsy and Tracey, were pushed in swings, rode in the wagon and watched Jake fly “super-duper high” on the swings. Our 5’ tall 9-year-old carefully took them from their posh wagon and placed them on a bench in the shade to watch him, so they “don’t get sun-redded like mommy!”
After riding our bike 2 miles, playing catch with a ball in the pool for 90 minutes, chasing trains, stopping to look at a dump truck and a tractor-trailer rig, we came home this afternoon and played dress-up/make-believe with a new book of paper dolls.
Open your minds and shatter the stereotypes friends – a little make believe is good for ALL children.
--------------------------------------
Beautifully Oblivious
May 27, 2012
I've heard neurotypical children begin playing with dolls around 18 months, that’s a big average. Appropriate play, imaginative play and cooperative play all emerge at different stages of development, but by 18 months most aren’t dragging the dolly by the hair down the driveway.
Jake started collecting stuffed animals and various dolls years ago, but they would just sit perched on his bed or piled in the closet. There’s something about the eyes and faces of the dolls that can be unbearable for him.
Now that our Super Hero is 9, 5’ tall and 100 lbs he’s sleeping with his old Cabbage Patch doll, Tracey! It tickles me to death when he drops her and then scurries to pick her up and ask her if she’s ok. There are many, many developmental milestones right there folks.
According to the Autism Society of America, “pretend play is common to all children, with one exception. Children with autism have a neurological disorder that impairs imaginative play and social interaction.” I’ll take any imaginative and nurturing play I can get.
This morning, after our testosterone packed morning of Harleys, elevators, trains, busses; we decided to head to the toy store and find some new doll clothes. I double checked with Chris so he knew what we were doing and asked if he was fine with it.
“Listen, I gave up this dolly fight long ago… he can have a boy doll, girl doll, transgender or cross-dressing doll. I don’t really care!”
OK. What a good Daddy! I love my husband!
Jake insisted on bringing Tracey into the store so we can make sure she fits and will look good in the outfit. He wanted to get her a sun dress… I’m not making this up folks, I’m not nearly that gifted.
Eye balls and head turns as we crossed the parking lot. Cars stopped to stare but, after we crossed. HA.
I notice. Jake doesn’t. Beautifully oblivious.
We’re walking up and down the aisles looking for Cabbage Patch outfits and there were none to be found. Up one aisle, Jake spotted a box of triplet baby dolls that make various baby noises on a motion sensor. As he screamed and ran past the synthesized crying he also grabbed my hand on the way down. Since he’s able to pull me right over I gasped and had no other option but to run as well.
I can’t tell you how many people turned around to stare!
I notice. Jake doesn’t. Beautifully oblivious.
Jake started obsessing over those triplets. He kept running back to make them cry, giggle and coo. After four or five times down the same aisle, I’m about ready to scream. I'm growing frustrated and grab him to redirect his attention while an old lady watched... two other kids laughed... another dad led his kid the long way around to the Barbie aisle while keeping his distance.
I notice. Jake doesn’t. Beautifully oblivious.
Then he spotted the giant battery-powered cars.
“Mommy, take my picture in front of the Es-ca-lady [Escalade] truck so I can get it for my birthday and take Tracey for a ride!” I was cracking up! The irony of this picture was so great. I have a Super Hero who can use his imagination, pretend play, love motors and dig in the dirt! I was thrilled and absolutely took his picture.
Two families stop to watch.
I notice. Jake doesn’t. Beautifully oblivious.
In the checkout line, we’re behind a dude. I knew he saw us coming and chose the line purposely to maybe teach him a little something. While in line, Jake points out that Tracey’s hair is a hot mess and it needs to be fixed better before we put on her new outfit. The dude turns his head slightly and I smile and wave.
Moments later, Jake asks if I think the pants on the new outfit will be long enough. The dude now does a full body turn and looks both of us up and down. This is really a short line folks, all this happens in a matter of 2 or 3 minutes.
It’s almost our turn to put our things on the counter and Jake spots the lollipops. “Mommy can I please get a lollipop we’re sort of late for lunch?”
“Sure thing, because you asked with great manners you can have a lolli – choose one!”
“I WANT THE PINK ONE!”
Man I love my kid. I couldn’t have scripted that any better.
Parent your kids, pull your kids out of their heads and expose them to everything. I don’t feel badly, I’m not embarrassed in fact quite the opposite. While gender biases and stereotypes flood our lives, do what’s best for your kid. Research has proven it is critical that parents allow boys to engage in dramatic and doll play. Pretending, dressing and feeding dolls is ok. Role playing with dolls (parents take part) will help them interact with other children, practice language and social skills. Include sharing and problem solving.
I’ll take a Super Hero who is nurturing and compassionate any day of the week. Another mold broken!
Beautifully Oblivious
May 27, 2012
I've heard neurotypical children begin playing with dolls around 18 months, that’s a big average. Appropriate play, imaginative play and cooperative play all emerge at different stages of development, but by 18 months most aren’t dragging the dolly by the hair down the driveway.
Jake started collecting stuffed animals and various dolls years ago, but they would just sit perched on his bed or piled in the closet. There’s something about the eyes and faces of the dolls that can be unbearable for him.
Now that our Super Hero is 9, 5’ tall and 100 lbs he’s sleeping with his old Cabbage Patch doll, Tracey! It tickles me to death when he drops her and then scurries to pick her up and ask her if she’s ok. There are many, many developmental milestones right there folks.
According to the Autism Society of America, “pretend play is common to all children, with one exception. Children with autism have a neurological disorder that impairs imaginative play and social interaction.” I’ll take any imaginative and nurturing play I can get.
This morning, after our testosterone packed morning of Harleys, elevators, trains, busses; we decided to head to the toy store and find some new doll clothes. I double checked with Chris so he knew what we were doing and asked if he was fine with it.
“Listen, I gave up this dolly fight long ago… he can have a boy doll, girl doll, transgender or cross-dressing doll. I don’t really care!”
OK. What a good Daddy! I love my husband!
Jake insisted on bringing Tracey into the store so we can make sure she fits and will look good in the outfit. He wanted to get her a sun dress… I’m not making this up folks, I’m not nearly that gifted.
Eye balls and head turns as we crossed the parking lot. Cars stopped to stare but, after we crossed. HA.
I notice. Jake doesn’t. Beautifully oblivious.
We’re walking up and down the aisles looking for Cabbage Patch outfits and there were none to be found. Up one aisle, Jake spotted a box of triplet baby dolls that make various baby noises on a motion sensor. As he screamed and ran past the synthesized crying he also grabbed my hand on the way down. Since he’s able to pull me right over I gasped and had no other option but to run as well.
I can’t tell you how many people turned around to stare!
I notice. Jake doesn’t. Beautifully oblivious.
Jake started obsessing over those triplets. He kept running back to make them cry, giggle and coo. After four or five times down the same aisle, I’m about ready to scream. I'm growing frustrated and grab him to redirect his attention while an old lady watched... two other kids laughed... another dad led his kid the long way around to the Barbie aisle while keeping his distance.
I notice. Jake doesn’t. Beautifully oblivious.
Then he spotted the giant battery-powered cars.
“Mommy, take my picture in front of the Es-ca-lady [Escalade] truck so I can get it for my birthday and take Tracey for a ride!” I was cracking up! The irony of this picture was so great. I have a Super Hero who can use his imagination, pretend play, love motors and dig in the dirt! I was thrilled and absolutely took his picture.
Two families stop to watch.
I notice. Jake doesn’t. Beautifully oblivious.
In the checkout line, we’re behind a dude. I knew he saw us coming and chose the line purposely to maybe teach him a little something. While in line, Jake points out that Tracey’s hair is a hot mess and it needs to be fixed better before we put on her new outfit. The dude turns his head slightly and I smile and wave.
Moments later, Jake asks if I think the pants on the new outfit will be long enough. The dude now does a full body turn and looks both of us up and down. This is really a short line folks, all this happens in a matter of 2 or 3 minutes.
It’s almost our turn to put our things on the counter and Jake spots the lollipops. “Mommy can I please get a lollipop we’re sort of late for lunch?”
“Sure thing, because you asked with great manners you can have a lolli – choose one!”
“I WANT THE PINK ONE!”
Man I love my kid. I couldn’t have scripted that any better.
Parent your kids, pull your kids out of their heads and expose them to everything. I don’t feel badly, I’m not embarrassed in fact quite the opposite. While gender biases and stereotypes flood our lives, do what’s best for your kid. Research has proven it is critical that parents allow boys to engage in dramatic and doll play. Pretending, dressing and feeding dolls is ok. Role playing with dolls (parents take part) will help them interact with other children, practice language and social skills. Include sharing and problem solving.
I’ll take a Super Hero who is nurturing and compassionate any day of the week. Another mold broken!
----------------------------------------------------------
On the Right Track; Redirections Abound
December 30, 2011
Feel it: that moment when I finally sink into the seat on the train and a wave of panic flows over me: Are we on the right train? Which direction should we be going? Which direction will the train go? Is there the possibility that people could sit right next to Jake? Dear God please let us be on the right train... heart beats out of chest.
After the myriad of hurdles we jumped while preparing for our train-ride travels; the quelled anxiety, the detailed details and scheduled schedules for the next 36 hours, 2106 minutes… once our butts were in a seat my shoulders finally fell. Unfortunately, that relief was short lived.
I just wanted to relax and enjoy the vacation but we’re at a shakey stage of social development, we can’t let him go a second unattended in public. He will talk himself right into trouble with total strangers on the street, in the john, or on a bus.
The roller coaster ride of ‘oh crap what’s he gonna say hold your breath’ turns into ‘my God I didn’t know I could my breath that long and thank goodness he didn’t say what I thought he was going to say’ is accessible, free and runs MANY MANY times a day. No lines, no waiting, no kidding!
As he matures, changes meds and meets new people the social graces of Autism, or lack of, become more of a game of hide-and-seek as well as on-the-spot crash courses in respect and manners. A wave of panic envelopes me whenever he opens his mouth lately. He is fiercely determined to strike up a conversation with any and everyone he meets, passes by or tramples over.
On this trip alone, so many moments come to mind… the funniest of note was when we were walking the big city streets. We had to stop briefly to wait for the walk signal and there were some women standing there enjoying a cigarette. Jake blurts out in a tone of disgust (similar to my tone when I’m cleaning up pee from the bathroom floor), “Ugh WHO is blowing smoke?” I gasped and instead of waiting for what happened next, we ran across the street as fast as we could. I swear I didn’t exhale until I was 2 blocks down.
Another frustrating thing that happens frequently is the confusion over pronouns. On any given day, I am a he/she/her/him… they’re interchangeable for many Super Heroes, not just Jake.
So we were sitting in the restaurant eating and he started up a conversation with a woman at the neighboring table. Amazingly appropriate questions flowed back for with ease between the two of them, as we tried not to intercede. She was polite and patient and then explained to me and Chris that she used to work in the special education field. She answered each question after carefully deciphering Jake’s inflections and imperfect pronunciations.
“Where do you live? Do you have a house or hotel (apartment)? Did you take a cab here? Is your backyard tall? What did you buy at the store?” Chris and I were thrilled for relatively safe social opportunity and were stunned at the give and take that was happening. Each question was related to the prior yet moving the conversation forward. (The barrage reminded me of speed dating)
During a lull in his conversation, Jake was so happy he started telling us: “He’s a really nice lady. He’s a pretty brown lady. I want to go to play at hims house!” When much to my surprise the woman threw up her arms in the air (imagine Sister Mary Gallagher’s superstar pose on SNL) channeled her best Whitney Houston and started singing “I’m every WOMAN!!!!”
I laughed as Chris and I both explained pronouns are still a mystery and to correct him, every time, in the middle of a giant exciting paragraph would be pointless. He won’t even hear us. Afterwards I told him for the millionth time, that women are SHE’s, not a he or him. “Oh, OK”
As we returned to the hotel, Jake was still flying high from his successful tête-à-tête with his new friend and he fell asleep singing the "Gloria" from church as he drifted off. The next day started early as we caught a cab in the dark then boarded our train back home. His excitement grew each time we stopped and more people boarded. Conversation was endless along the ride; unfortunately the child CANNOT seem to muster a whisper.
“Do all brown mans ride the train? Look more brown mans boarding the train I love this!”
“Jake, we don’t identify people by the color of their skin, God made people all different colors,” I told him quietly in his ear, but just loud enough for the nearby seat neighbors could hear. It seems so simple and innocent because it is, but when it comes out of his mouth as people are passing by, I could die. We get glares, eye rolls and head shakes. The race thing is so sensitive and comes across the wrong way because he looks so much older than he really is, socially.
Quick mom, come up with something fast! Cue the blaring horn.
I started making jokes about the horn on the train. The driver was honking that horn almost non-stop. We both knew the stops were not that close together, so we shared some great giggles about all the people still sleeping while the train rode by blaring its horn! We pretended to be people snoring and sleeping then wake up as we heard the intrusion. Here I was thinking I was doing great by jogging his attention. Then: “Is that big brown man driver blowing the horn and making lots of noise?”
Sigh.
I swear seconds later a huge African American dude boarded and approached our seat. I could see Jake eyeing him from the second he walked through our door and his excitement was growing as he got closer. (please don’t say anything please don’t say anything) Jake is doing the full body excitement shiver now and continues to stare…. (I literally didn’t breathe this entire time waiting for him to blurt out “Hi Super Huge Brown Man.”)
As he passed, before Jake could even pull his jaw up from his lap, I said “Wow, look at that tall guy, he’s going all the way to the end of the train!” That right there was a gift from God. Jake would stalk the guy until he got to talk to him.
“Can we go sit back there?”
Cue the Mommy glare. “We just can’t follow the guy, Jake.”
Many many days lie ahead for us to defend our Super Hero, enlighten him to social graces and educate friends every chance we get. Please help us all spread the word and look at every child without judgment. You never know what they’re capable of with a little education and redirection!
On the Right Track; Redirections Abound
December 30, 2011
Feel it: that moment when I finally sink into the seat on the train and a wave of panic flows over me: Are we on the right train? Which direction should we be going? Which direction will the train go? Is there the possibility that people could sit right next to Jake? Dear God please let us be on the right train... heart beats out of chest.
After the myriad of hurdles we jumped while preparing for our train-ride travels; the quelled anxiety, the detailed details and scheduled schedules for the next 36 hours, 2106 minutes… once our butts were in a seat my shoulders finally fell. Unfortunately, that relief was short lived.
I just wanted to relax and enjoy the vacation but we’re at a shakey stage of social development, we can’t let him go a second unattended in public. He will talk himself right into trouble with total strangers on the street, in the john, or on a bus.
The roller coaster ride of ‘oh crap what’s he gonna say hold your breath’ turns into ‘my God I didn’t know I could my breath that long and thank goodness he didn’t say what I thought he was going to say’ is accessible, free and runs MANY MANY times a day. No lines, no waiting, no kidding!
As he matures, changes meds and meets new people the social graces of Autism, or lack of, become more of a game of hide-and-seek as well as on-the-spot crash courses in respect and manners. A wave of panic envelopes me whenever he opens his mouth lately. He is fiercely determined to strike up a conversation with any and everyone he meets, passes by or tramples over.
On this trip alone, so many moments come to mind… the funniest of note was when we were walking the big city streets. We had to stop briefly to wait for the walk signal and there were some women standing there enjoying a cigarette. Jake blurts out in a tone of disgust (similar to my tone when I’m cleaning up pee from the bathroom floor), “Ugh WHO is blowing smoke?” I gasped and instead of waiting for what happened next, we ran across the street as fast as we could. I swear I didn’t exhale until I was 2 blocks down.
Another frustrating thing that happens frequently is the confusion over pronouns. On any given day, I am a he/she/her/him… they’re interchangeable for many Super Heroes, not just Jake.
So we were sitting in the restaurant eating and he started up a conversation with a woman at the neighboring table. Amazingly appropriate questions flowed back for with ease between the two of them, as we tried not to intercede. She was polite and patient and then explained to me and Chris that she used to work in the special education field. She answered each question after carefully deciphering Jake’s inflections and imperfect pronunciations.
“Where do you live? Do you have a house or hotel (apartment)? Did you take a cab here? Is your backyard tall? What did you buy at the store?” Chris and I were thrilled for relatively safe social opportunity and were stunned at the give and take that was happening. Each question was related to the prior yet moving the conversation forward. (The barrage reminded me of speed dating)
During a lull in his conversation, Jake was so happy he started telling us: “He’s a really nice lady. He’s a pretty brown lady. I want to go to play at hims house!” When much to my surprise the woman threw up her arms in the air (imagine Sister Mary Gallagher’s superstar pose on SNL) channeled her best Whitney Houston and started singing “I’m every WOMAN!!!!”
I laughed as Chris and I both explained pronouns are still a mystery and to correct him, every time, in the middle of a giant exciting paragraph would be pointless. He won’t even hear us. Afterwards I told him for the millionth time, that women are SHE’s, not a he or him. “Oh, OK”
As we returned to the hotel, Jake was still flying high from his successful tête-à-tête with his new friend and he fell asleep singing the "Gloria" from church as he drifted off. The next day started early as we caught a cab in the dark then boarded our train back home. His excitement grew each time we stopped and more people boarded. Conversation was endless along the ride; unfortunately the child CANNOT seem to muster a whisper.
“Do all brown mans ride the train? Look more brown mans boarding the train I love this!”
“Jake, we don’t identify people by the color of their skin, God made people all different colors,” I told him quietly in his ear, but just loud enough for the nearby seat neighbors could hear. It seems so simple and innocent because it is, but when it comes out of his mouth as people are passing by, I could die. We get glares, eye rolls and head shakes. The race thing is so sensitive and comes across the wrong way because he looks so much older than he really is, socially.
Quick mom, come up with something fast! Cue the blaring horn.
I started making jokes about the horn on the train. The driver was honking that horn almost non-stop. We both knew the stops were not that close together, so we shared some great giggles about all the people still sleeping while the train rode by blaring its horn! We pretended to be people snoring and sleeping then wake up as we heard the intrusion. Here I was thinking I was doing great by jogging his attention. Then: “Is that big brown man driver blowing the horn and making lots of noise?”
Sigh.
I swear seconds later a huge African American dude boarded and approached our seat. I could see Jake eyeing him from the second he walked through our door and his excitement was growing as he got closer. (please don’t say anything please don’t say anything) Jake is doing the full body excitement shiver now and continues to stare…. (I literally didn’t breathe this entire time waiting for him to blurt out “Hi Super Huge Brown Man.”)
As he passed, before Jake could even pull his jaw up from his lap, I said “Wow, look at that tall guy, he’s going all the way to the end of the train!” That right there was a gift from God. Jake would stalk the guy until he got to talk to him.
“Can we go sit back there?”
Cue the Mommy glare. “We just can’t follow the guy, Jake.”
Many many days lie ahead for us to defend our Super Hero, enlighten him to social graces and educate friends every chance we get. Please help us all spread the word and look at every child without judgment. You never know what they’re capable of with a little education and redirection!
-----------------------------------
Big Apple Bluster
October 3, 2011
We met our traveling buddies at their place and hit the road early. Armed with picture schedules, show tickets and snacks we started out before the sun came up. The M family was keen to the back streets so we arrived early at the station. Sitting quietly in the small room for an hour was a little more than we could ask of Jake –he just had to talk to someone. Next thing I know, he’s striking up a conversation with the lady in the ticket window.
“Hi what’s your name? Do you want to sit next to me on the train? Can you come to see Lion King with me?” Yes fast mover. I’ll need to talk to his father!
She kept looking to me for answers. I’d nod yes and she’d say “yes”, I’d roll my eyes and she’d spit out an “I don’t know”, then I’d shake my head no and she’d say “no”. Quite amazing powers I have! Ha.
Finally, the train pulled up and we dashed out to the platform to board. A few tense moments there, holding three boys back from the bright yellow warning stripe on the platform, but we successfully boarded and managed to avoid the quiet car.
Jake loved the ride, pointed out all the graffiti on the bridges/overpasses/buildings and never slept a wink. At one point, I’m sure he was annoying other passengers when his IPod blared “I wear my sunglasses at night” 6x’s in a row. The couple next to us was happy to hear a Michael Jackson tune pop into the rotation.
We arrived in NY excited and happy and sort of forgot how hungry we were. So we headed to the hotel to drop our bags with the concierge and grab some lunch. The walk was good but empty Super Hero tummys thought differently.
McDonalds
As we entered the favorite McD’s an annoying and constant beeping greeted us at the door. Jake covered his ears (I honestly thought that would be the end of him) and JM wasn’t having any of it either. We needed double cheeseburgers and fries in a hot minute and JM (mommy) tried to calm her hungry hero. While I was in line, a female worker behind the counter yelled to my friend, “You oughta get a belt momma!”
I was irate and enraged. I could feel my face flush and turn red. Hope THAT shows up on the security video. I couldn’t hold back. I informed her that her behavior was completely inappropriate and unacceptable. Three workers were now laughing at me as I explained that our friend has autism and she was way out of line. I was not going to back down, but the more I complained, the more they avoided taking my order. We needed food and fast! So I stopped, but not before visions of my butt getting kicked across the McD’s by this employee about twice my size going viral on YouTube!
Food came, no cookies, no calm, exit stage left.
Jake’s schedule said ferry boat next, so a trip to the Battery was due. We grabbed a cab while the M’s cooled down for a walk.
Ferryboat Friends
The Staten Island ferry boarding is a cattle call. Worse than Southwest airlines actually. I’ve never seen Jake stand in the middle of a mob of people and wait. This prize was grand… and long awaited glimpse of the Statue of Liberty. He stood quietly then couldn’t help himself.
“Hi!” he says to a woman standing near us. “Are you going to be on my boat?”
“Yes I am. Are you excited?”
“Yes, yes I am.” He said while giggling with glee. He gets so happy when people talk with him.
He moved closer and positioned himself half-way between his new friend and me. I half expected him to hold her hand. We all stuck close as we boarded the ferry and enjoyed the first views together. Not long after that Jake found a seat outside on the side of the boat. He plopped down next to a Chinese couple and tried to talk to them. They just smiled and nodded and I cracked up. He’s gotta pick some English speakers!
“There she is!!!!!” he screeched as the ferry turned and the statue came into view. Jumping up and down with happy feet lasted about 2 minutes and he turned to me… “When do we turn around and go see our skyscraper?”
Hotel Heights
We’ve been on-line stalking the Millenium Hilton for weeks and weeks. After a 2-day long search for a hotel in New York with a pool we locked in the sky scraper which stands next to ground zero. Jake wanted to stay as high as humanly possible; I’d rather be a little closer to the ground myself. He beat me to the punch, charging into the posh place and right up to the front desk. The lovely man named Arturo addressed him and asked him what he needed. “I need to sleep on the tippy top highest floor next to heaven way up on top of the hotel pleeeeeaaaaaase!!!”
Crap, now I’m screwed. This crazed social Super Hero just blew it, I’m a gonner. By the time I get to the desk, Arturo says,”I’ll give you an upgrade – here’s the best I can do. Room 5202!”
“WWHHAATT?” I gasped, while watching Jake jump and spin around in the air 10x’s in a row.
“Just don’t look out the window,” says Arturo, half snickering at me.
The elevator ride was more excitement than the train. It does this express thing through the bottom 15 floors and zooms so fast the numbers don’t register on digital counter. Jake is shrieking with excitement… yes we did it twice, this time.
Entering our room wasn’t bad, all the curtains were drawn. Heck, we ended up with a King bed suite somehow with two rooms. A front room, then King bedroom = 2 solid walls of WINDOWS. Jake ripped open those curtains so fast; I needed to mentally focus on my breathing. IN – OUT – IN – OUT stare at the floor IN – OUT – IN – OUT. Let’s do this. Once we pulled them all open, the sight was breathtaking. Not only could we see all the way to New Jersey on one side and the Battery Park on the other, we overlooked the World Trade Center rebuilding project and memorial fountains.
Ground Zero Talk
The topic of those big squares (fountains) didn’t come up until Sunday morning. This was a blessing of course; I don’t think either of us would have slept if I told him the story before he shut his eyes for the night. While looking down at what looked like a giant mess from 50 floors up, Jake started asking what happened. Since we were so close to heaven, I relied on God to put these difficult words in my mouth in a way he could understand. I was able to get away with; a whole bunch of people went to heaven 10 years ago. They were working here in big tall buildings and some bad men crashed airplanes into the sky scrapers.
“Did they go to jail?”
“They died too honey.”
“Did they go to heaven?”
“I don’t think so. Really, really bad people sometimes go to a place called hell.”
“Is God there?”
“Nope.”
“Am I going to hell for wetting my pants?”
“No honey.”
“OK”
The conversation was over, but resurfaced hours later.
The Show
The tears started streaming down my face and the curtain was raised on the Lion King. Nope, nothing was sad, in fact just the opposite. It finally hit me; I was sitting in a show on Broadway WITH JAKE! I never imagined he’d sit through a show like this, let alone have this opportunity and not feel judged.
One little kid stormed the stage just before the curtain lifted only to be one-arm wrangled by his mother following close behind. Another 5 or 6 year old was carried in completely upside down, over his mother’s shoulder while having pressure applied to his head. The little girl in front of us sunk in the red velvet seats to play with her electronic game throughout most of the show. Some kids came in for one minute, some for ten, some for none. (Some Super heroes slept through the entire thing, not mentioning any names, SHK a-hem.)
As I looked around the Minskoff Theatre at all the Super Hero friends, I couldn’t stop the flow of salty tears. Kids screaming, adults with autism standing up and down, talking machines announcing bathroom breaks and desires for drinks rang out now and then, and no one cared. People got up and left. Some never returned.
My gaze was interrupted when Jake chimed in with, “This is sssooooo coooool. Look there’s a giraffe. A dancing elephant!”
Oh my goodness! Not only is he here, but he’s HERE, engaged and enjoying it. YES!!
Uh – oh, the daddy lion was killed.
Wait for it.
“Is the brother lion going to jail?”
“Well he’s a lion honey, and it’s just a show.”
“Well he made him to go heaven.”
“Yes, but ……”
At this point in the show, the floor of the stage opened up and the daddy lion went down.
“Mommy, why is he going down, heaven is up.”
And we we’re done.
Jake’s brain sees the main guy is dead, it must be over. He is D-O-N-E. The idea of coming back for the second half doesn’t cut it when the Grandma next to us kept telling him to wear his listening ears, the girl in front of us kept screaming and the kid next to me kept standing up and pulling down his pants.
“Where’s the train? Are we going to go to the train now? Is it going to look like the train we took here? Will it be the same train? What time does the train leave? How far away is it? Can we sit in the exact same seats?” Rapid fire succession with rising intensity = anxiety is setting in.
No Bathroom Rules
This is just a quick aside, but another cool thing was the bathroom experience. Every mom took her son into the women’s bathroom and it was so nice. NO ONE CARED! The woman’s doorway was full of Superhero boys and girls!
Walking Back
You could feel the tension release from Jake’s body as we walked out the front door. Suddenly, “I love this city! I love New York! This is a cool city right mommy?” I just about died. We were dodging a zillion people on the sidewalk. Because of his visual super powers, he was unable to look forward while navigating very busy sidewalks and kept slamming into people right and left. I was practically dragging him behind me while he walked on my shoes.
He looked up long enough just to notice a police officer though, as we approached Penn Station. “Hi Cop!” he screamed at the officer.
“Yo, how’s it goin’?” (no lie)
“What’s your name?”
“Kenny!”
“My name is Jake! You’re so cool!”
“Thanks kid!”
Penn Station Pals
Once inside the chaotic (in my brain) train station, my panic set in. The Amtrak dude that helped me bump up my ticket earlier was no real help. “Go sit over there and watch the board. 4 minutes before your train leaves, you’ll be called to the track.”
“Uh, thanks, I just go stand over there?”
“Yup.”
“Right there?”
“Yup, right there.”
Jake could sense my stress and his anxiety turned into rapid fire questioning again. He was desperately searching for calm and an answer to his quell his fear.
“Where’s the train? Are we going to go to the train now? Is it going to look like the train we took here? Will it be the same train? What time does the train leave? How far away is it? Can we sit in the exact same seats? Is it going to be dark time when we get home? When can I go to bed?”
“Jake look at my face. How does it look; scared or happy?”
“Scared, mommy looks scared!” He starts patting my hand and rubbing my back.
“I am scared, I don’t know how this works, so stop asking me what color the train will be!”
So we sat by the stairs and stared at the big board. I kept an eye on the Amtrak info booth which remained unmanned, so I started scanning the crowd for a friendly face. A woman came up right next to us and quietly perched on top of her wheelie suitcase. She was cool and calm while looking at her IPod so I approached.
She must have taken pity on me from the look on my face but I explained to her that I have no idea how this works and asked if we really need to sprint to our train. She said yes, it is crazy but miraculously we ended up being on the same train. She agreed to let us hang out with her and follow her to the proper track.
Soon her husband appeared, picked up the luggage and headed downstairs. She explained to him that we were now “with” them and he said “Let’s go!”
We went. Now we’re downstairs right by the track waiting for the screen to flash our track number. I didn’t know that this was sort of frowned upon, but thought something fishy when our new friend explained that we’ll have a “leg up” on the people lined up upstairs and we’ll get a seat for sure.
The gentle woman with us told me to trust him, “he does this all the time,” while smiling warmly.
Uh… OK… you’re only total strangers I just met in New York, but I’ll trust you. I must have been fried! HA. (Sorry SS and DS I now believe you were there to help us for a reason!) It gets better. Jake totally warmed up to our new friends. DS was so engaging and helpful, Jake felt very comfortable. Ends up DS has had experience with Super heroes too!
Our track was announced and off we go. As we turn the corner to head downstairs an Amtrak worker met us. “YOU folks didn’t wait where you were supposed to wait upstairs…..”
Before the angry worker could finish his scolding, DS calls an audible, “Let’s go this way!” And now we are following total strangers down the back hallways of Penn Station trying to out-smart the train workers… Lord help me!
SS calls, “Honey I sure hope you know where you’re going!!!” OK, don’t panic, don’t panic.
Down to the left, then to the right, down 4 stairs… “There’s the train, there’s the train!”
Jake is jumping out of his skin. “It’s gray and red and blue and just like the last one!” We board and DS and SS are gone in another car. I was sort of sad I may never see them to properly thank them. The train pulls out and there he is.
DS standing in front of us with a huge grin and his hand extended to Jake. “We made it buddy, have a safe trip.”
Amazing. Divine. Generous. I hope we see them again.
Back In Bed
Jake did manage to sleep in the car on the way home and transferred nicely to bed when we got home. He was so exhausted, I helped him strip and he plopped on top of all his blankets. He didn’t budge until 7am!
Why do I still feel like I was hit by a train?
Big Apple Bluster
October 3, 2011
We met our traveling buddies at their place and hit the road early. Armed with picture schedules, show tickets and snacks we started out before the sun came up. The M family was keen to the back streets so we arrived early at the station. Sitting quietly in the small room for an hour was a little more than we could ask of Jake –he just had to talk to someone. Next thing I know, he’s striking up a conversation with the lady in the ticket window.
“Hi what’s your name? Do you want to sit next to me on the train? Can you come to see Lion King with me?” Yes fast mover. I’ll need to talk to his father!
She kept looking to me for answers. I’d nod yes and she’d say “yes”, I’d roll my eyes and she’d spit out an “I don’t know”, then I’d shake my head no and she’d say “no”. Quite amazing powers I have! Ha.
Finally, the train pulled up and we dashed out to the platform to board. A few tense moments there, holding three boys back from the bright yellow warning stripe on the platform, but we successfully boarded and managed to avoid the quiet car.
Jake loved the ride, pointed out all the graffiti on the bridges/overpasses/buildings and never slept a wink. At one point, I’m sure he was annoying other passengers when his IPod blared “I wear my sunglasses at night” 6x’s in a row. The couple next to us was happy to hear a Michael Jackson tune pop into the rotation.
We arrived in NY excited and happy and sort of forgot how hungry we were. So we headed to the hotel to drop our bags with the concierge and grab some lunch. The walk was good but empty Super Hero tummys thought differently.
McDonalds
As we entered the favorite McD’s an annoying and constant beeping greeted us at the door. Jake covered his ears (I honestly thought that would be the end of him) and JM wasn’t having any of it either. We needed double cheeseburgers and fries in a hot minute and JM (mommy) tried to calm her hungry hero. While I was in line, a female worker behind the counter yelled to my friend, “You oughta get a belt momma!”
I was irate and enraged. I could feel my face flush and turn red. Hope THAT shows up on the security video. I couldn’t hold back. I informed her that her behavior was completely inappropriate and unacceptable. Three workers were now laughing at me as I explained that our friend has autism and she was way out of line. I was not going to back down, but the more I complained, the more they avoided taking my order. We needed food and fast! So I stopped, but not before visions of my butt getting kicked across the McD’s by this employee about twice my size going viral on YouTube!
Food came, no cookies, no calm, exit stage left.
Jake’s schedule said ferry boat next, so a trip to the Battery was due. We grabbed a cab while the M’s cooled down for a walk.
Ferryboat Friends
The Staten Island ferry boarding is a cattle call. Worse than Southwest airlines actually. I’ve never seen Jake stand in the middle of a mob of people and wait. This prize was grand… and long awaited glimpse of the Statue of Liberty. He stood quietly then couldn’t help himself.
“Hi!” he says to a woman standing near us. “Are you going to be on my boat?”
“Yes I am. Are you excited?”
“Yes, yes I am.” He said while giggling with glee. He gets so happy when people talk with him.
He moved closer and positioned himself half-way between his new friend and me. I half expected him to hold her hand. We all stuck close as we boarded the ferry and enjoyed the first views together. Not long after that Jake found a seat outside on the side of the boat. He plopped down next to a Chinese couple and tried to talk to them. They just smiled and nodded and I cracked up. He’s gotta pick some English speakers!
“There she is!!!!!” he screeched as the ferry turned and the statue came into view. Jumping up and down with happy feet lasted about 2 minutes and he turned to me… “When do we turn around and go see our skyscraper?”
Hotel Heights
We’ve been on-line stalking the Millenium Hilton for weeks and weeks. After a 2-day long search for a hotel in New York with a pool we locked in the sky scraper which stands next to ground zero. Jake wanted to stay as high as humanly possible; I’d rather be a little closer to the ground myself. He beat me to the punch, charging into the posh place and right up to the front desk. The lovely man named Arturo addressed him and asked him what he needed. “I need to sleep on the tippy top highest floor next to heaven way up on top of the hotel pleeeeeaaaaaase!!!”
Crap, now I’m screwed. This crazed social Super Hero just blew it, I’m a gonner. By the time I get to the desk, Arturo says,”I’ll give you an upgrade – here’s the best I can do. Room 5202!”
“WWHHAATT?” I gasped, while watching Jake jump and spin around in the air 10x’s in a row.
“Just don’t look out the window,” says Arturo, half snickering at me.
The elevator ride was more excitement than the train. It does this express thing through the bottom 15 floors and zooms so fast the numbers don’t register on digital counter. Jake is shrieking with excitement… yes we did it twice, this time.
Entering our room wasn’t bad, all the curtains were drawn. Heck, we ended up with a King bed suite somehow with two rooms. A front room, then King bedroom = 2 solid walls of WINDOWS. Jake ripped open those curtains so fast; I needed to mentally focus on my breathing. IN – OUT – IN – OUT stare at the floor IN – OUT – IN – OUT. Let’s do this. Once we pulled them all open, the sight was breathtaking. Not only could we see all the way to New Jersey on one side and the Battery Park on the other, we overlooked the World Trade Center rebuilding project and memorial fountains.
Ground Zero Talk
The topic of those big squares (fountains) didn’t come up until Sunday morning. This was a blessing of course; I don’t think either of us would have slept if I told him the story before he shut his eyes for the night. While looking down at what looked like a giant mess from 50 floors up, Jake started asking what happened. Since we were so close to heaven, I relied on God to put these difficult words in my mouth in a way he could understand. I was able to get away with; a whole bunch of people went to heaven 10 years ago. They were working here in big tall buildings and some bad men crashed airplanes into the sky scrapers.
“Did they go to jail?”
“They died too honey.”
“Did they go to heaven?”
“I don’t think so. Really, really bad people sometimes go to a place called hell.”
“Is God there?”
“Nope.”
“Am I going to hell for wetting my pants?”
“No honey.”
“OK”
The conversation was over, but resurfaced hours later.
The Show
The tears started streaming down my face and the curtain was raised on the Lion King. Nope, nothing was sad, in fact just the opposite. It finally hit me; I was sitting in a show on Broadway WITH JAKE! I never imagined he’d sit through a show like this, let alone have this opportunity and not feel judged.
One little kid stormed the stage just before the curtain lifted only to be one-arm wrangled by his mother following close behind. Another 5 or 6 year old was carried in completely upside down, over his mother’s shoulder while having pressure applied to his head. The little girl in front of us sunk in the red velvet seats to play with her electronic game throughout most of the show. Some kids came in for one minute, some for ten, some for none. (Some Super heroes slept through the entire thing, not mentioning any names, SHK a-hem.)
As I looked around the Minskoff Theatre at all the Super Hero friends, I couldn’t stop the flow of salty tears. Kids screaming, adults with autism standing up and down, talking machines announcing bathroom breaks and desires for drinks rang out now and then, and no one cared. People got up and left. Some never returned.
My gaze was interrupted when Jake chimed in with, “This is sssooooo coooool. Look there’s a giraffe. A dancing elephant!”
Oh my goodness! Not only is he here, but he’s HERE, engaged and enjoying it. YES!!
Uh – oh, the daddy lion was killed.
Wait for it.
“Is the brother lion going to jail?”
“Well he’s a lion honey, and it’s just a show.”
“Well he made him to go heaven.”
“Yes, but ……”
At this point in the show, the floor of the stage opened up and the daddy lion went down.
“Mommy, why is he going down, heaven is up.”
And we we’re done.
Jake’s brain sees the main guy is dead, it must be over. He is D-O-N-E. The idea of coming back for the second half doesn’t cut it when the Grandma next to us kept telling him to wear his listening ears, the girl in front of us kept screaming and the kid next to me kept standing up and pulling down his pants.
“Where’s the train? Are we going to go to the train now? Is it going to look like the train we took here? Will it be the same train? What time does the train leave? How far away is it? Can we sit in the exact same seats?” Rapid fire succession with rising intensity = anxiety is setting in.
No Bathroom Rules
This is just a quick aside, but another cool thing was the bathroom experience. Every mom took her son into the women’s bathroom and it was so nice. NO ONE CARED! The woman’s doorway was full of Superhero boys and girls!
Walking Back
You could feel the tension release from Jake’s body as we walked out the front door. Suddenly, “I love this city! I love New York! This is a cool city right mommy?” I just about died. We were dodging a zillion people on the sidewalk. Because of his visual super powers, he was unable to look forward while navigating very busy sidewalks and kept slamming into people right and left. I was practically dragging him behind me while he walked on my shoes.
He looked up long enough just to notice a police officer though, as we approached Penn Station. “Hi Cop!” he screamed at the officer.
“Yo, how’s it goin’?” (no lie)
“What’s your name?”
“Kenny!”
“My name is Jake! You’re so cool!”
“Thanks kid!”
Penn Station Pals
Once inside the chaotic (in my brain) train station, my panic set in. The Amtrak dude that helped me bump up my ticket earlier was no real help. “Go sit over there and watch the board. 4 minutes before your train leaves, you’ll be called to the track.”
“Uh, thanks, I just go stand over there?”
“Yup.”
“Right there?”
“Yup, right there.”
Jake could sense my stress and his anxiety turned into rapid fire questioning again. He was desperately searching for calm and an answer to his quell his fear.
“Where’s the train? Are we going to go to the train now? Is it going to look like the train we took here? Will it be the same train? What time does the train leave? How far away is it? Can we sit in the exact same seats? Is it going to be dark time when we get home? When can I go to bed?”
“Jake look at my face. How does it look; scared or happy?”
“Scared, mommy looks scared!” He starts patting my hand and rubbing my back.
“I am scared, I don’t know how this works, so stop asking me what color the train will be!”
So we sat by the stairs and stared at the big board. I kept an eye on the Amtrak info booth which remained unmanned, so I started scanning the crowd for a friendly face. A woman came up right next to us and quietly perched on top of her wheelie suitcase. She was cool and calm while looking at her IPod so I approached.
She must have taken pity on me from the look on my face but I explained to her that I have no idea how this works and asked if we really need to sprint to our train. She said yes, it is crazy but miraculously we ended up being on the same train. She agreed to let us hang out with her and follow her to the proper track.
Soon her husband appeared, picked up the luggage and headed downstairs. She explained to him that we were now “with” them and he said “Let’s go!”
We went. Now we’re downstairs right by the track waiting for the screen to flash our track number. I didn’t know that this was sort of frowned upon, but thought something fishy when our new friend explained that we’ll have a “leg up” on the people lined up upstairs and we’ll get a seat for sure.
The gentle woman with us told me to trust him, “he does this all the time,” while smiling warmly.
Uh… OK… you’re only total strangers I just met in New York, but I’ll trust you. I must have been fried! HA. (Sorry SS and DS I now believe you were there to help us for a reason!) It gets better. Jake totally warmed up to our new friends. DS was so engaging and helpful, Jake felt very comfortable. Ends up DS has had experience with Super heroes too!
Our track was announced and off we go. As we turn the corner to head downstairs an Amtrak worker met us. “YOU folks didn’t wait where you were supposed to wait upstairs…..”
Before the angry worker could finish his scolding, DS calls an audible, “Let’s go this way!” And now we are following total strangers down the back hallways of Penn Station trying to out-smart the train workers… Lord help me!
SS calls, “Honey I sure hope you know where you’re going!!!” OK, don’t panic, don’t panic.
Down to the left, then to the right, down 4 stairs… “There’s the train, there’s the train!”
Jake is jumping out of his skin. “It’s gray and red and blue and just like the last one!” We board and DS and SS are gone in another car. I was sort of sad I may never see them to properly thank them. The train pulls out and there he is.
DS standing in front of us with a huge grin and his hand extended to Jake. “We made it buddy, have a safe trip.”
Amazing. Divine. Generous. I hope we see them again.
Back In Bed
Jake did manage to sleep in the car on the way home and transferred nicely to bed when we got home. He was so exhausted, I helped him strip and he plopped on top of all his blankets. He didn’t budge until 7am!
Why do I still feel like I was hit by a train?
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Does he know........?
February 23, 2011
After crying through the most recent Parenthood episode, where Max learns he has something called Asperger’s, it brought back all the memories of how we explained to Jake that he has Autism. For years Chris and I prepared, stressed and discussed how we’d answer the other “A” question in our lives, but hadn’t talked about this one too much. Jake knows he was adopted and grew in another mommy’s belly, but the Autism topic sort of snuck up on us.
I can remember not wanting any negativity associated with his struggles and the day it came up in the car – is the day he became Superhero Jake. I swear God put the words in my mouth. We talked about how he hears things most people can’t hear, sees things most people don't see, smells things most people can’t smell and all that came to mind was Super Powers. I can remember saying, “Jake your super powers are called Autism.” It hurt me to say it more than it hurt him to hear it. Success!
Jake knows that his brain works so fast that he cannot stop to read more than 3 words in a line. We know that he has the power to create his own computer games but cannot add 2 + 2. In the past, he has stopped a slot machine on lucky sevens across the board (repeatedly) just by watching them spin a few times. Yes, we know… a Vegas trip is planned as soon as they agree to turn off all those flashing lights and play the music softly.
We all know that his brain works in ‘real things’ so if he can’t see it, it’s not there: believe me that Father, Son, Holy Spirit thing is a mind blow! He also knows that if he doesn’t take his medicine to slow his brain down, his ‘happy feet’ will dance him up and down the hallway so many times he’ll end up at the grocery store.
But how much more does he need to know at this point? This is what he understands now and he’s very happy with himself. I’ll gladly be faulted for my child having too much confidence and a positive self-image!!! Many challenges still lie ahead.
What we believe is this: Jake amazes us every day. God chose us to be his parents and to give him stability after a very uncertain beginning. We are blessed every day by the people put in our path who love our son. The support of his school, teachers, therapists, doctors, friends and family is real and is what our life is all about.
Does he know........?
February 23, 2011
After crying through the most recent Parenthood episode, where Max learns he has something called Asperger’s, it brought back all the memories of how we explained to Jake that he has Autism. For years Chris and I prepared, stressed and discussed how we’d answer the other “A” question in our lives, but hadn’t talked about this one too much. Jake knows he was adopted and grew in another mommy’s belly, but the Autism topic sort of snuck up on us.
I can remember not wanting any negativity associated with his struggles and the day it came up in the car – is the day he became Superhero Jake. I swear God put the words in my mouth. We talked about how he hears things most people can’t hear, sees things most people don't see, smells things most people can’t smell and all that came to mind was Super Powers. I can remember saying, “Jake your super powers are called Autism.” It hurt me to say it more than it hurt him to hear it. Success!
Jake knows that his brain works so fast that he cannot stop to read more than 3 words in a line. We know that he has the power to create his own computer games but cannot add 2 + 2. In the past, he has stopped a slot machine on lucky sevens across the board (repeatedly) just by watching them spin a few times. Yes, we know… a Vegas trip is planned as soon as they agree to turn off all those flashing lights and play the music softly.
We all know that his brain works in ‘real things’ so if he can’t see it, it’s not there: believe me that Father, Son, Holy Spirit thing is a mind blow! He also knows that if he doesn’t take his medicine to slow his brain down, his ‘happy feet’ will dance him up and down the hallway so many times he’ll end up at the grocery store.
But how much more does he need to know at this point? This is what he understands now and he’s very happy with himself. I’ll gladly be faulted for my child having too much confidence and a positive self-image!!! Many challenges still lie ahead.
What we believe is this: Jake amazes us every day. God chose us to be his parents and to give him stability after a very uncertain beginning. We are blessed every day by the people put in our path who love our son. The support of his school, teachers, therapists, doctors, friends and family is real and is what our life is all about.
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To Push or NOT to Push, That is the question
February 12, 2011
Pick your battles!
Ignore the behavior and it will stop!
They’ll figure it out on their own eventually!
Advice spoken by many, tried by millions of parents with success, unless you have a child where the old trusted discipline methods don’t work.
Parents of kids with “super powers” learn quickly that old Dr. Spock hadn’t come across one of these creatures when he penned his world famous child- rearing books. Raised voices, spanking, ignoring, and the best positive parenting techniques are lost on these guys. Yelling gets him excited, spanking makes him laugh, ignoring causes panic/anxiety attacks and sometimes you just have to say “NO”.
How does one choose which battle to fight on any given day? Circumstance can play a big role in the decision. Sometimes the choice is made for us by judgmental/ignorant bystanders and the fear of what “people might think” no matter how many times we say we don’t care. Seeing people watch in horror as our child lies on the floor of the shopping mall delivers a long-lasting sting. Hearing comments made about that “spoiled brat is too big to be acting like that” leaves even the strongest parents feeling defeated and angry. Watching kids tease and imitate our child’s stimming behavior tests my self-restraint skills. How hard do we push?
Do we really want to fight about a burnt and broken french fry here in the middle of the restaurant or should we just take it out of the basket? Is this the place to force him to eat that crispy imperfection smothered in ketchup or pull out the old “Ooohhhh that’s my favorite Jakey, mommy loves the broken ones!” Life will throw imperfection at him on a daily basis – he has to learn to cope. How hard do we push?
Is there a perfect time to ‘practice’ talking to new friends? How do you find a safe kid, who won’t judge and laugh, when Jake looks off stage to mommy for the next ‘line’? Do I just let him say the next thing that pops into his head? Life will throw less-tolerant people in his path – he needs to learn to react. How hard do we push?
Accommodation is the biggest challenge facing us now. Is our helping, hurting? No matter how much we need routine in order to get to school, learn in school, and stay regulated, life is just not that way. Curve balls are coming -- we need to prepare. How hard do we push?
Last week, just changing one toy during a behavior therapy session paralyzed Jake with fear and all the topics I had hoped to cover in the session were out the window. I actually thought about caving and giving him the darn toy just so we could work on a more pressing issue. Thankfully, our doctor urged me to stay strong and work through this meltdown. After the 45 minute session of watching Jake throw couches, wet his pants and pull the doctors hair, I walked out completely exhausted and dejected.
For as long as we have Jakey by our sides, the desire to protect him is palpable and unrelenting. He will never use a public restroom alone, we will always travel miles to attend the same ‘comfortable’ churches and we will continually coach him on proper communication skills. Does that mean we’re doing too much? Does that mean we’re hurting rather than helping? Does it mean I need to chill out? To me it means God gave us this gorgeous, precious boy to protect, teach and love until he is the best man he can be. We all need help along the way – Jake just needs a little more!
To Push or NOT to Push, That is the question
February 12, 2011
Pick your battles!
Ignore the behavior and it will stop!
They’ll figure it out on their own eventually!
Advice spoken by many, tried by millions of parents with success, unless you have a child where the old trusted discipline methods don’t work.
Parents of kids with “super powers” learn quickly that old Dr. Spock hadn’t come across one of these creatures when he penned his world famous child- rearing books. Raised voices, spanking, ignoring, and the best positive parenting techniques are lost on these guys. Yelling gets him excited, spanking makes him laugh, ignoring causes panic/anxiety attacks and sometimes you just have to say “NO”.
How does one choose which battle to fight on any given day? Circumstance can play a big role in the decision. Sometimes the choice is made for us by judgmental/ignorant bystanders and the fear of what “people might think” no matter how many times we say we don’t care. Seeing people watch in horror as our child lies on the floor of the shopping mall delivers a long-lasting sting. Hearing comments made about that “spoiled brat is too big to be acting like that” leaves even the strongest parents feeling defeated and angry. Watching kids tease and imitate our child’s stimming behavior tests my self-restraint skills. How hard do we push?
Do we really want to fight about a burnt and broken french fry here in the middle of the restaurant or should we just take it out of the basket? Is this the place to force him to eat that crispy imperfection smothered in ketchup or pull out the old “Ooohhhh that’s my favorite Jakey, mommy loves the broken ones!” Life will throw imperfection at him on a daily basis – he has to learn to cope. How hard do we push?
Is there a perfect time to ‘practice’ talking to new friends? How do you find a safe kid, who won’t judge and laugh, when Jake looks off stage to mommy for the next ‘line’? Do I just let him say the next thing that pops into his head? Life will throw less-tolerant people in his path – he needs to learn to react. How hard do we push?
Accommodation is the biggest challenge facing us now. Is our helping, hurting? No matter how much we need routine in order to get to school, learn in school, and stay regulated, life is just not that way. Curve balls are coming -- we need to prepare. How hard do we push?
Last week, just changing one toy during a behavior therapy session paralyzed Jake with fear and all the topics I had hoped to cover in the session were out the window. I actually thought about caving and giving him the darn toy just so we could work on a more pressing issue. Thankfully, our doctor urged me to stay strong and work through this meltdown. After the 45 minute session of watching Jake throw couches, wet his pants and pull the doctors hair, I walked out completely exhausted and dejected.
For as long as we have Jakey by our sides, the desire to protect him is palpable and unrelenting. He will never use a public restroom alone, we will always travel miles to attend the same ‘comfortable’ churches and we will continually coach him on proper communication skills. Does that mean we’re doing too much? Does that mean we’re hurting rather than helping? Does it mean I need to chill out? To me it means God gave us this gorgeous, precious boy to protect, teach and love until he is the best man he can be. We all need help along the way – Jake just needs a little more!
