Tags search: asperger's+syndrome
Basketball Magic
I am sure a number of you have heard about this story, but it's definitely always worth sharing! A young highschool boy with Asperger's Syndrome steals the show during a his highschool basketball game. A must see! http://www.youtube.com/watch?v=ngzyhnkT_jY
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Shonda Schilling 's Frank Account Of Son With Asperger's Syndrome
Just found another book to help families coping with Autism to shoulder the weight of their added responsibilities and challenges. “The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome” is written by Shonda Schilling. In more than 200 pages, Shonda tells us about their third child, Grant, now 10 yrs old, and how their family struggled while learning to cope with his Aspergers.
Baseball fans will know Shanda’s husband, Curt Schilling. Wkiipedia tells us that Curt is a former American Major League Baseball right-handed starting pitcher. He helped lead the Philadelphia Phillies to the World Series in 1993 and has won World Series championships in 2001 with the Arizona Diamondbacks and in 2004 and 2007 with the Boston Red Sox. Curt retired in 2008 because of injuries.
Shonda, who graduated from Towson State College majoring in journalism, writes it exactly how it is. Even though they had all the comforts of life to raise their four children, the overwhelming hardship of raising a child with Aspergers and the struggle to keep their family intact was just the same as everybody else.
The National Institute of Neurological Disorders and Stroke (NINDS) gives the following description for Asperger syndrome (AS). “It is a developmental disorder. It is an autism spectrum disorder (ASD). The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors. Other characteristics of AS include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior and the inability to interact successfully with peers; problems with non-verbal communication; and clumsy and uncoordinated motor movements.”
Grant was only diagnosed at the age of 7. “You go through different stages,” Shonda Schilling told FoxNews.com. “You mourn the child that you thought you would have. You’re sad because you’re afraid of the future and you feel guilty. You feel guilty because you’ve just spent the first seven years of his life yelling at him when he had no idea why you were yelling at him.”
All of the Schillings’ children, including Grant, are enrolled in the public school system in a Massachusetts town. Their lives have all been affected. Shonda revealed that her son Gehrig became anorexic while the family was dealing with Grant’s Asperger’s diagnosis; that she and Grant both wound up on medication, one for depression and the other for ADHD; and that she and Curt got counseling to save their marriage.
Shonda said:“This book shares our story and admiration for any parent faced with a diagnosis within the autism spectrum. Through our family’s story, I want other families to know that they’re not alone or isolated. The book is a celebration of children, and how wonderful they are, no matter their differences.”
What do you think must be the most challenging aspect of raising a Special Needs child?
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Enabled Kids - Time to Grow
Our good friend Mari Nosal (M.Ed., CECE) just recently finished a poem that she shared with us on our blog, Enabled Kids. It talks about graduation and her son with Asperger's Syndrome. It would be really great if you could take a look and tell her what you think.
You can see the post here: http://www.enabledkids.ca/?p=665">http://www.enabledkids.ca/?p=665</a><br><br>Thanks everyone, and let us know if you have any questions or comments :)
-Enabled Kids
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Haydn's World
Haydn's World is a blog that I write where I tell stories about my adventures raising my six year old son with Asperger Syndrome. Here is the first post. Sort of an introduction to how we do things in Haydn's World...
My son is way too cute to be my kid.
My wife says she sees my face in their. But I only see Daddy when he is about to
get into trouble. He gives me a little sideways glance and a crooked
smile, the "Imp Face," and I feel like I'm looking in a mirror. (One
that makes me appear to be much better looking and significantly
younger, of course) Otherwise, I don't see it. He is four years old,
wicked smart, silly beyond silly, probably quite a bit like most of the
kids you know or have known. Except for one thing. His "super power,"
as we like to call it. He has Asperger Syndrome (AS from now on, to
avoid embarrassing typos).
I am not going to spend 500 words trying to give you a detailed
definition of AS... Just Google it, read a hundred articles about it -
then I'll show you a kid nothing like the ones you read about. Once
you've met one kid with Asperger Syndrome... you've met one kid with
Asperger Syndrome. Just like any other child, mine didn't come with a
handbook, and I haven't found one in any book store.
Here is what you need to know for now:
Asperger Syndrome is a neuro-biological disorder on the higher end of the autism spectrum.
Kids with AS tend to exhibit serious deficiencies in social and
communication skills. They can also play piano with their feet, and are
very adept at juggling and like to watch gladiator movies. OK, that
last part may not necessarily apply to all Aspies (that's what they are
calling themselves these days), but I just wanted to see if you were
still reading. Some important things to understand right from the get go: - I am not an expert on AS. I am not trying to tell anyone how to raise a child with AS.
- I like to write, and my life has a little extra flavor from time to
time, so I am going to fill up pages and pages with my rambling nonsense
for the enjoyment of anyone who wants to take a look.
- Everything I write about is personal: My life, my family. No
preaching. No Aspie whisperers here. I am not claiming to be the man
with the answers.
- I am not going to ramble on about all the folks in history who MAY
have had AS (funny how they are always of major historical significance,
it's never the royal piss boy, or ye olde poop sweeper).
- I am just a dad raising a little boy who is a treasure to behold,
and I feel like sharing my experiences. He is an amazing kid... who
just happens to have Asperger Syndrome.
And here is a warning to potential readers:
If you are of the politically correct way of thinking, or
are particularly sensitive about anything, thanks for stopping by, but
you don't belong here. I am not shy about poking fun at myself, my life, or anything that floats across my radar.
Anything. I mean it. Anything.
As many of you are probably aware, being
a parent of an Aspie is just like being a parent of any other kid.
There is only one difference. EVERYTHING. Just kidding. This is all I
know, as far as being a parent goes, so there is nothing different, or
unusual about it.
I hope it will be as
entertaining to read about as it has been to live it.
By the way, if anything I write here helps a parent with a child like
mine, that would be great. But that would be a "happy accident," if I may quote the late, great Bob Ross.
I have no plan or outline for this
little endeavor. I just want to tell some stories.
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"Time To Check Places..." (Easter Weekend 2010)
My 4 year-old son, Haydn, is playing amongst his cousins in the backyard at Grandma's house. It's the Saturday before Easter.
That's what four year-old aspies do... they play among or near other kids. Social skills, like one-on-one conversation, and playing with their peers are a real challenge for these little guys. Haydn does little fly-by encounters, he runs through the games and tries to get involved a little, but on his own terms. Fortunately for Haydn, he is getting ABA, Occupational Therapy, Speech Therapy, and basic social skills training as a part of his IEP at school, so he is getting a little better at playing with others. A little. He has come very far, but still has a long way to go.
Anyway, I am sitting on the deck with my sister, Heather, and my Mom, as Haydn does his little kamikaze runs into the basketball games and other backyard shenanigans, when he suddenly breaks out of his flight pattern and runs straight to the shed (which is also an entrance to the garage). Under the railing of the deck I can see his little Imp Face eyeballing me as he grabs the doorknob.
"Haydn. What are you doing over there?"
"I need to check places."
"Let go of the doorknob, and go play with the kids. I don't want you going in there." You have to be very specific with an aspie
"Ok."
Sprinting back to the other kids with a smile on his face, I can tell this is not going to end anytime soon. I rejoin the conversation with the ladies, and out of the corner of my eye I see it: a blonde streak heading for the shed again.
"Haydn. Didn't I tell you to not to open the door?"
"Yes, Daddy-o." That's it. That's all I'm going to get. Still getting to know Haydn's alter ego, Captain Literal .
"Then why are you holding the door knob?"
"I need to check places."
"Go back in the yard and play with the kids please."
"OK." Off he goes, soon to return.
Hours of this game. Five minutes of conversation interrupted by this wacky little monkey who needs to "check places."
Over and over and over.
Finally, I decided it is time to use one of the oldest Daddy tricks in the book. I will give in, allow him to check places, and by eliminating the challenge and game-like element of this nonsense, he will get bored and go play with the kids. Reverse psychology 101.
Start engraving my plaque: "Father of the Effing Year 2010.
"Haydn."
"Yes Daddy-o?"
"Would you please go check places for me?" Blue eyes widen.
I have his attention, my plan is working beautifully.
"I would really like it if you would go check places for me."
He starts doing what I call his Stiminy Cricket happy dance, hands flapping (A little stimming. We'll talk about that at a later date), his little mind no match for the awesome might of my Daddy genius.
"Nothing would make me happier than having you check places for me. I really need to know if it's alright in there."
I'd like to thank the Academy...
Off like a shot, he runs to the door, blows through it like a toddler tornado, disappears into the dark bowels of "places," and reappears about a minute later.
According to my plan, the novelty of the game wears off, Haydn goes to play, and I can finish my conversation.
WRONG.
I have told a child who interprets everything literally, that I WANT him to check places. That nothing would MAKE ME HAPPIER than having him check places.
I am an idiot.
I have let the lion out of the cage and covered everyone in barbecue sauce.
Guided tours to go check the places commence shortly thereafter, and continue through the rest of the day and will continue all day on Easter Sunday. All of the kids and all of the adults, receive the privilege of going to check places.
By the way, when you go check places, you walk into the garage with Haydn in order to look at a single light bulb hanging from the garage door opener, and bask in it's awesomeness.
Doesn't sound too exciting, but you do get to hang out with the cutest, funniest, most interesting little dude you'll ever meet.
Until next time,
Gotta go - Time to check places...
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The Literal Contrarian (Or, how to lose an argument to a 4 year old aspie... every time
This is a story I wrote about my son, Haydn about a year ago. He has come a long way since then...
But it is always fun to take a trip back and remember the good old days of madness, clueless parenting, and laughs, laughs, laughs. (not all that different from today when you really think about it)
Enjoy...
The Literal Contrarian
As I have mentioned before, Haydn is learning conversation as a second language, and the more insight I can get into his way of thinking, the easier it will be for me to help him. Our disagreements have peeled the curtain back a little bit more...
It's a fairly simple scenario. I want Haydn to do something. Haydn doesn't want to do it, so he must argue with me. (Like father, like son)
"Haydn, I need you to finish your puzzle. When you finish, we can go to the mall."
"Daddy-o, time go to the mall now?"
"No, Haydn we'll go in a little while... after you finish the puzzle."
"Wanna go in a BIG while??!!!"
There it is. End of discussion. “A BIG while?" Where do I go from there?
How about this one:
"Haydn, you can't have any more ice pops today. You are going to eat them all up, and we won't have any for tomorrow."
"Gonna eat them DOWN today??!!!"
I don't even know what that means.
If my son disagrees with me, he simply takes the literal opposite meaning of part of what I have said, and throws it back at me. He unloads this potent piece of verbal artillery with an odd, rather loud, question/exclamation inflection.
A quexclamation...
I can't ever predict what part will get turned around on me. Sometimes it's a verb, sometimes a noun... it could be anything. And that is what makes the quexclamation a most lethal way of arguing. There is no anticipating the response. No preparing any type of retort. It is one of the few times that Haydn is completely focused on the topic at hand, and he is so serious and forceful in his quexclamation, that I soon come to realize that he has to be right and I clearly must be wrong.
So what did we learn today?
Haydn's quexclamations show us that he is even more of a literal thinker than we had considered. He sees things strictly at face value. There is no reading between the lines with this kid. In fact, if it's not RIGHT ON THE LINE, he will probably miss it. On the other hand, his vocabulary is pretty substantial, since he seems to know the opposite meaning of at least one word in every single statement I make to him. He is a master of adverbs and adjectives and is a very quick thinker who can manufacture a contrary quexclamation almost instantly.
Over time, we will help Haydn understand, in his own way, the subtlety of language, and I have no doubt that one day he will be able to work and manipulate the language to express everything that is going inside that magnificent little mind of his.
Some day soon, in the not too distant future.
But for now the real question is...
How does one argue with someone who wields the quexclamation so effectively?
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Control Freak... or all I got for Christmas is some OCD (December 2010)
My son, Haydn is a control freak.
He has a diagnosis of Asperger Syndrome, and of course, OCD is riding shotgun with his diagnosis.
OCD is a nice medical, technical, smarty-pants term... But I am not a medical, technical, smarty pants kind of Dad.
So, as I said before...
My son, Haydn is a control freak.
During dinner, I decide to offer Haydn a biscuit. The following conversation ensues:
"The biscuit is not for the boy!"
"That's fine Haydn."
"I'm not going to eat bis..."
"I don't know what that means Haydn."
"This is not the biscuit room!!" (That's one way of putting it...)
"That's fine Haydn. But, I want you to keep the biscuit on your plate. You don't have to eat it, but it stays on your plate."
A ten to fifteen minute stand-off follows until the innate need to feed diffuses the argument and he eats his dinner with the biscuit riding side-saddle on his plate. (Can't make this stuff up)
Haydn - 1... OCD - 0
Haydn tries to have a certain amount of control over as many elements of his life as he can. The "Biscuit Incident" is a perfect example. He doesn't want to eat the biscuit because it isn't pasta or an ice pop (like any other five year-old). Then he uses his Haydn-spective and decides that since the biscuit is something he won't eat, so there is no reason for it to be on the plate.
But it is not only the layout of a dinner plate that Haydn feels he must control. He tries to control topics of conversation. His pragmatic language skills are not great, so by keeping you on a topic of his choosing will eliminate the unpredictable and make things easier for him. In fact, he can take any conversation, and within one or two exchanges bring it to the topic of his choosing... usually fans. He dressed himself in nothing but gray or black for over a month without our noticing. (Hey, at least he was dressing himself). He likes to keep the balance of random objects (both lamps on or off if two are in a room, or both visors up or down in the car...). He tries to travel the same the path when he walks through a park, zoo, or mall. He wants the order of the play list when he is listening to his music to stay the same. He tries to maintain a certain predictability to his life which seems to calm him. It is my thought that eliminating the unpredictable elements in his life makes it easier for him to deal with the intense sensory stimulation and social challenges he must deal with. Unfortunately for him, his Daddy-o does not let him have any of these things, so Mr. Haydn needs to find other ways to cope. Which leads to some difficult situations from time to time.
When he gets himself worked up over something like this it, can be a bit of a trick to get him off topic and out of the mental loop he settles into. Since we can't just beat him with a stick (joke...) we need to use calm, repetitive statements, always keeping an even keel and under no circumstances should we yell. It just hurts his ears. (Having released the Kraken on him a few too many times in the early days, I can tell you it just makes him cry and draws him into his own head, and leaves me feeling like a total jerk)
Often we just remove him from the scene of the crime and let him reset himself (that's the big one - more often than not, he can do it himself if we can get him into a quiet corner, or a different room).
Everywhere we go, I try to be conscious of the doors we go in, the paths we take when we walk around, even the route we take in the car. I mix things up as much as possible, avoiding any patterns or schedules whenever I can. He is getting pretty good at handling the change-ups and mix-ups I throw at him, (He doesn't really have a choice. The rule is - deal with it, or we go home) he has really learned to adapt on the fly and we have been able to avoid any problematic situations.
But, during the weeks leading up to Christmas...
Daddy-o screws up.
Haydn and I spend a few nights during the weeks preceding Christmas running to the mall and doing some shopping. We park in the garage, run into the mall, grab a few things and leave. During a two week stretch we probably spend two or three nights a week getting the last minute stuff done. Five, maybe six trips. I do not pay attention to the routine, do not mix things up, and every time we enter, Haydn hits the handicap button to open the door (and loves it). Two days after Christmas, Haydn, Mommy and I go to the mall to exchange a gift. I park in the same spot, we enter the same door, and...
The button doesn't work.
Haydn pretty much loses his mind over this. He starts to cry, yelling at the two of us;
"We need to push the button."
"I have to use my button hand."
He throws himself on the floor, against the wall, and will not move. He keeps yelling and crying and really makes a good show of it, when Mommy steps in and:
"Haydn, do you have a boo boo?"
"No I do not, Mommy."
"Haydn, are you hurt from the button not working."
"No I am not Mommy."
"If you don't have a boo-boo, and are not hurt, then why are you crying?"
"I want to use the button door."
"Well, the button is broken, but we are inside the mall now. Do you want to stay and have fun, or should we go home because the button is broken?"
"I want to stay."
Mommy saves the day, and Haydn learns a little lesson.
And the button is no longer an issue.
This particular incident is an important reminder to Mommy and me, that for the time being, we must always keep an eye on Haydn's behaviors. It did not take long for the button hunger to sink it's teeth into him. He settles so quickly and easily into routines that if left to his own devices he will embrace them and become dependent. From the outside looking in it probably looks like over-parenting and micro-managing, but it is critical to put an end to potentially harmful behavior before it becomes ingrained in his thought process.
"The Incident of the Broken Handicap Access Button," (sounds like a bad Hardy Boys title) reminds us that although we have had many successes, and we have had a lot of laughs, and our little man Haydn is doing extremely well, we can not get lazy, because it is so easy to stumble and veer off track. Everything we do now, is to help him five, ten, twenty years down the road.
All important things to consider. However, there is one thing, as a result of this experience, that haunts me at night and irritates me to no end.
We live in the 21st century. Shouldn't ALL doors open and close automatically? Can we please, just lose the damn buttons?
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The Incident at The Children's Place (Fall 2010)
Hi there boys and girls. Here is a little story about a temporary loss of self control, some suspect daddy-ing and a little Greek mythology thrown in for good measure. A little exercise in madness I like to call:
"The Incident at The Children's Place"
It's Thursday night and it's time to take a little trip out to the mall to buy some warmer clothes for Haydn. We walk into The Children's Place and Haydn immediately needs to use the potty. Mommy starts looking for clothes while we go check out the bathroom. He goes into the stall alone, comes out and washes his hands. Now it's time to go shopping.
We walk out of the bathroom and I turn to the left and look for Mommy, when what to my wondering eyes should appear?
Absolutely nothing.
All the lights in the store black out for a few seconds.
I spin around and find my son peeking out from behind two big stacks of boxes and a cart overloaded with mops and cleaning products. His hand is on a large breaker switch. Somehow, during the nine and a half seconds I was turned away from him, he has found and turned off the main power switch for the entire store. An impressive bit of work, and definitely one of those moments where being cute saved his life.
"Daddy-o, are you mad?"
"Yeah, a little bit. I think you and I need to leave the store right now."
"Daddy-o, you're mouth is closed."
That's just so I don't say something I'll regret
"Haydn, we are leaving this store NOW."
"Daddy-o, are you mad?"
"A little bit, and getting madder. Let's go."
Under normal circumstances I would take Haydn home. Do not pass GO, do not collect $200. I generally give him a great deal of freedom when we go out, but he has to follow the rules and behave appropriately. I may give him one get out of jail free card from time to time, but rules are rules and he knows he has to follow them. Or we go home. Every time.
But today, Mommy is with us, and he really needs new school clothes, so I must improvise and use my superior Daddy skills to handle the situation.
He gets in the jog stroller, and I silently push him to the car.
Why do I suddenly feel a little like Sisyphus pushing that big old rock up the hill?
When we get to the car, I strap him into his seat, settle into the driver seat and plot my strategy.
The rock is rolling smoothly towards the top of the hill...
"Daddy-o, I want to go back in the mall."
"Haydn. We are not going to talk for a few minutes."
I stare at the wall of the parking garage and ignore him. I realize that, although this behavior is unacceptable, it was an isolated incident - a momentary loss of what is normally excellent self control. I just need to be firm and we will have a quality conversation concerning the incident and...
"Daddy-o. Please help me."
I am still ignoring him, staring at the wall and playing the role of the pissed off Daddy.
"Daddy-o. Please help me with the seat."
A little slower, but the rock is still working it's way up that hill...
I turn around and my son is hanging out of his car seat. He has positioned himself into some sort of twisted car-seat yoga pose - He has one leg strapped in his seat while he balances gingerly on his free leg. His hands are pushing against the front seat in what appears to be an attempt to keep from falling over and preventing his extremities from popping off his body and bouncing all over the car. And, of course, he has a big old smile on his face.
(Must be strong! Resist the cuteness! You are the Daddy, you can do this...)
I reach back and set him free. He pulls his trapped leg loose and climbs into the passenger seat. During his “workout," I have formulated my strategy, and I am prepared to Daddy the crap out of this kid. I will wield my spectrum-child mastery, work in a little pragmatic language work, and remind him of the ramifications of public switch-y-ness.
"Haydn. Do you know why we came out to the car?"
He reaches for the rear-view mirror and starts flipping it up and down.
"Haydn. Hands still. Do you know why we came out to the car?"
"Yes, Daddy-o."
That’s all I’m going to get out of that question. Once again his literal mind rears it's ugly head... as he pushes the power button on the stereo with one hand and pretty much every other button with the other.
Our rock appears to be slowing down considerably...
"Haydn! Hands still. Please tell me why I got mad in the store."
The hazards are now on and Haydn is repeatedly pushing in and ejecting the cd.
"Haydn! Hands still. I want you to look at me, and please tell me why I got mad at you in the mall."
Or just honk the horn and flick the key chain why don't you. Not trying to get anything productive done here.
Not a lot of movement by our friend the rock at the moment...
"Haydn! Hands still.”
That part is from school and actually works. Nothing I have come up with today has accomplished much of anything... might as well steal their moves.
“I know that looking at my eyes makes your head hurt. You can look at my nose..."
He puts his finger right up my nose.
"Please don't touch my face. Hands to yourself. You know the rule. You just need to have your face looking at mine. Look at my eyebrows or forehead..."
He pokes me right in the eye.
"Hey Daddy-o, you have two eyebrowses."
"I'm well aware of that, Haydn."
Down goes Frazier! Anybody seen my rock?
Twenty minutes of this Spectrum Sisyphean Challenge has officially gotten the best of me, so I do my best to salvage the situation.
"Haydn. Look at me for a minute. I got mad and we left the mall because you CAN NOT EVER..."
"Play with the lights. I'm sorry Daddy-o."
I'm not sure that I even had anything to do with this resolution, but at least we can get out of the damn car now.
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Halloween 2010 - Trick or Treat... or Train Wreck
"Trick or Treat!"
"Thank You!"
"Happy Halloween!"
This is the script for Halloween this year. I suppose my first clue that this is something Haydn is not particularly comfortable with, should be the fact that he has created a script. He tends to script and break down into steps any activity that stresses him out. It eliminates as many unpredictable elements as possible, and helps him finish what he starts. (One of the primary rules in Haydn's World: Finish What You Start!)
Halloween is not, nor has it ever been a holiday that Haydn particularly enjoys. It also turns out that Halloween is not a holiday that his Daddy particularly enjoyed. I didn't like to wear costumes (neither does Haydn), I hated masks (as does Haydn) and I didn't like to trick or treat because, among other things, I do not like candy. (Strike three... storm clouds on the horizon). So Haydn has been dealt a double whammy as far as Halloween goes: A genetic predisposition to dislike costumes and trick or treating (my blog - my science), and Asperger Syndrome and all the social anxieties and sensory issues that go along with it.
So, of course, I want to put him in a costume and take him trick or treating.
My plan for Halloween this year is simple: The entire weekend is dedicated to creating the most fun Halloween ever - each step priming Haydn for an awesome trick or treating extravaganza.
The first thing on the itinerary of Halloween Awesome-ness 2010, is a visit to the Halloween Street: A place where most of the houses are decorated and the street is closed to traffic for safe Halloween fun. He loves it. There are ghosts and skeletons, there are houses with lawns full of Disney characters. There are smoke machines and strobe lights, even a Willy Wonka themed house. The place is awesome. Mommy loves Halloween and takes charge of the evening, and Haydn has a fantastic time.
The next day is Halloween. Haydn and I go out for breakfast, then go to buy our pumpkins. We walk through the store and go out back to find a canvas for our jack-o-lantern artistry. I don't see any pumpkins at first. I see a lot of gourds, squash, and other pumpkin relatives on the first few tables. There are some plants, a few little trees, but nothing we can carve. I peer over the winter plantings and I see a table about twenty feet away, littered with objects of that familiar orange color. Success!
The pumpkins look great from across the yard, but seem to be losing their pumpkin-ness the closer we get. We arrive at the table, and piled carelessly at the end are the "pumpkins." They are lumpy, a little squishy, and seem to have some real wear to their hides. It looks as though these miserable "pumpkins" have been braving the elements for months, waiting for someone to give them a home. There are a couple of roundish ones, a square one, and several that appear to be dying of some kind of pumpkin melanoma.
Haydn eyes the table of misfit "pumpkins" and starts his analysis:
"Daddy-o, that pumpkin looks wet."
"Thanks for noticing Haydn."
"We need to get a sphere pumpkin."
"I don't see any, but these look like they will do the job" (liar)
"Why is that pumpkin brown?"
"That's a pie pumpkin, we can't make a jack-o-lantern out of that one." (lies, lies, lies...)
"We going to make a jack-o-lantern out of these pumpkins?"
"We are certainly going to try little man." (why is there never a fan around when I need one?)
We pick the only two that can stand under their own power and load them into our shopping cart. We park the shopping cart by the side of the building (shouldn't have to worry about anyone making off with our cart of slug bait) and check out the rest of the farm. There is a little petting zoo, and some photo cutouts, and a little haunted house - if you dare...
We chase each other around and laugh at the haunted house. We take some pictures, and talk a little about the Hoberman Sphere. (another story for another day) Haydn feeds a few goats, and with the exception of a brief investigation into the electrical workings of one of the barns, we have a very "neuro-typical" morning. We pay for the "pumpkins," pick up Mommy, and go to Grandma's house to carve and paint them.
Incidentally, I did learn one very important thing about Halloween: Buying "pumpkins" on the morning of Halloween saves you exactly no money. I spent $35 on a couple of lumpy orange footballs. Just a little shopping tip for all the families out there.
We set up shop at Grandma's house and get to work on the "pumpkins." He draws a face and we carve it up. We pull the guts out of the pumpkin, he throws a little at me, and a pumpkin guts skirmish breaks out. We all have a fun afternoon. Probably not too different from your Halloween. Mommy creates her annual masterpiece, and now it's time to trick or treat.
He doesn't want to wear the costume.
Hey genius, remember how much we all love Halloween?
He just isn't having it. Instead of leaving well enough alone, I convince him to wear his awesome Iron Man suit with the light on the chest, and tell him that I will wear the mask. We are dressed as Iron Man and his hat rack. We gather up his entourage at our apartment, and Mommy, Daddy, Haydn, Grandma, Grandpa, and Nanny are ready to trick or treat. We decide to take him primarily to homes of people he knows, get him some candy, and get him home.
He goes up his first apartment:
"TrickorTreatThankYouHappyHalloween!"
A little nervous. No problem, a little pep talk, a few minutes of re-focusing and he is ready to go. Now the Halloween magic will begin.
We go to a few apartments in our complex and he does a great job. There are very few kids moving at his snail's pace, so he tends to have the porch to himself. Confidence building, Haydn decides he wants to go trick or treat at the house of his bus aide. Instead of taking him directly to trick or treat at a friendly place, I decide to have him work his way down the street. (You would think I never met this kid before...)
We approach the first house. He slowly walks up the path to the steps and I can see him reciting his little speech under his breath, steeling himself to the task. He gets to the steps and about ten kids run by him and storm the door. To his credit, he makes it up the stairs to the landing, where he freezes. His eyes start darting around, looking for something to focus on, anything but this Halloween nightmare he has walked into. We lock eyes for a second and I see he is overwhelmed and extremely anxious. He does not know what to do next.
"It's ok Haydn. You can do this."
Nothing. He looks so lost up there. I just want to grab him and give him a hug, but I can't do that. If I go and rescue him, I am reinforcing what he is already thinking: That he is currently in a situation that is too difficult for him, and he can't handle it on is own. I don't think there is any situation that he can't handle, and I want him to feel the same way. Some scenarios may take more work and preparation, but he can do anything. Of course, he didn't even want to do this, so this whole train wreck is my fault.
I have to try to get out him of the moment so he can get himself back on track.
Steps. He knows steps. Everything he does in his life, he breaks down into steps. Whenever he has to so something that is difficult for him, he breaks it down into steps, and he gets through it. (not bad for a five year old)
"Take a breath and remember Step 1."
His eyes slow down and he looks right at me. He is quietly talking to himself - most likely running through the steps required to successfully trick or treat.
"You can wait until everyone leaves if you want to. Then do Step 1."
I figure he will stand behind the door and wait for the madness to calm down, but instead, he gets in line behind the other kids, waits his turn, and gets his treats.
Working within a group of his peers is very difficult for him. It's one of the biggest challenges for a child with Asperger Syndrome. Interpersonal communication is also very tough, as is any situation where spontaneous conversation or social interaction can spring up, (pretty much everything about Halloween and trick or treating is a straight up nightmare for the poor kid), and he managed to get himself back on track in the middle of the madness, and finish what he started. And he's only five years old! (dramatic musical crescendo... close-up of Haydn's smiling face... Cut to proud Daddy)
This is a very significant achievement for him, and I want to let him know how awesome he is, and how proud I am. I want to give him a big hug, or a high five, a kiss, a giant fan...
He thanks the lady at the door, and turns to walk back to his entourage. He has a little spring in his step as he walks down the steps. I think he knows that he has achieved something significant. I think he realizes he should be proud of himself. I think he wants to share this moment with his Daddy. He is walking towards me and I can't wait to pick him up and give him a big hug.
He comes to the end of the path and stops right in front of me for a second and looks me right in the eyes (He doesn't lock eyes with anyone very often, so when he does it's pretty powerful), then...
He runs to Grandma for a hug. He grabs her hand and leads her away from me, and this accursed porch.
I think next year we'll skip the trick or treating.
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Some Thoughts on Stimming (winter 2011)
This is a little story I wrote last winter about my son Haydn and his stimming. I preface this one with his:
I am not an expert on Asperger Syndrome, or anything related to it (Pretty obvious, I would think... but, I just wanted to clarify). I am just trying to figure this thing out with my son, and I like to share our adventures. I hope you enjoy this little sojourn into the world of 'stimming.'
"Stimming" (in quotes for the last time in this story) is fairly common to the autism spectrum. There are a hundred different definitions in a hundred different books and they all are probably correct. I don't believe a simple definition can sum up everything that stimming is, and does, for people on the autism spectrum.
Here is a 'text-book' definition:
Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner.
That's a pretty broad definition. Nothing about the how or why of the beast. Nothing particularly helpful at all.
Now that we've confused things nicely, let's talk about my son Haydn's stimming.
Haydn (for those who are new to "Haydn's World") is my five year old son. He is always silly, often brilliant, and way too cute to be my kid. Two years ago he was diagnosed with Asperger Syndrome. Along with his super-power (that's what we call it) come the usual band of villains - sensory processing disorder, pragmatic language deficiency, o.c.d., proprioceptive dysfunction, social anxiety... stop me if you've heard this one before. One of the coping techniques that seems to be easy for little guys like Haydn to pick up on, is stimming.
Haydn starts stimming at a young age. He takes the lids off of boxes and containers and spins them like a top. He grabs his little trucks and cars spins their wheels endlessly. My initial reaction is, "My boy's a genius. He can make a toy out of anything!" (Ah, the days of my blissful ignorance)
The spinning progresses to where he begins to disassemble toys in order to find a part to spin.
Small warning bells going off now.
Haydn is about two and a half to three years old, when light switches make their entrance. He NEEDS to flip light switches. He cannot help himself. I think he uses the light switches as a tool to calm himself while he gets acclimated to a new environment. He walks the perimeter of every room, hugging the walls and checking out the switches, everywhere he goes. He walks from room to room, and flips light switches on and off, slowly working his way through the entire house. It takes about fifteen minutes and then he is ready to barely engage the people in the house.
We have spent hours upon hours working on controlling this impulse, and after about three hundred years we have helped him to understand and regulate it a little bit. He no longer walks the perimeter of new rooms, and he does not flip switches. Every once in a while he falls off the wagon, but he more or less has this one under control.
Because stimming is a significant part of his behavioral make-up, he and I have talked about it at length (simple terms, he is only five) and I have tried to explain to him what it means, and why he does it.
But every time you think you've got it figured out... something new pops up.
More overt physical stimming has revealed itself as Haydn has gotten older. He has started "flapping his wings," as he calls it, when he is a heightened sensory environment (any place that is very crowded or loud). He is starting to wiggle around and hop around more, and sometimes, he spins himself around (and around, and around...) in circles when he gets overly excited.
On a very rare occasion, he will kick it old school and take it to the light switches, or grab an object and give it a good spin. More often than not, he will just sit and WATCH a fan or toy spin, all the while making grand proclamations concerning the awesome-ness of that which is spinning, and always making sure to tell us four or ten times.
The stim-beast is always lurking in the shadows of Haydn's life, and will make an appearance anywhere, at any time. He and I recently went to a favorite store of his to look at some potential gifts for Christmas, and he spent the first few minutes staring at a spin-art toy as it circled round and round.
"Haydn, what are you doing over there?"
"I'm stimming on the spin-art, Daddy-o." Of course you are...
He's becoming very self-aware in his old age.
In Haydn's world there are two types of stimming. There is stimming that can be ignored, or passed off as "normal" behavior, (looking at fans, watching wheels spin, spinning yourself in circles, snapping his fingers, etc.), and there is stimming that is stigmatizing behavior - "STIGMING." (my word, learn to love it)
In Haydn's World, appropriate stimming is not discouraged. I know that when he starts to stim, there is usually a pretty good reason for it, and finding the cause of the stress is more important to me than the behavior. I will talk with him, and try to pin-point the source of his stress, and when we find it, figure how we can deal with it. Haydn, like most Aspies, has some pragmatic language deficiencies, so getting to the point can take a little time and patience, but we usually get our answers. As far as behavior goes, if any other kid would do it, Haydn can do it. It's that simple. If it looks a little odd, we try to get it under control. One of our principal concerns in Haydn's World, is perception. We are constantly attempting to decipher how Haydn perceives things and, help to shape how everyone else perceives him. I find it unfortunate that I have to spend so much time worrying about what other people may think, but as a child, how you behave pretty much defines who you are to your peers. They are too young and too impatient to take the time to learn what a wonderful person you are... most judgment seems to happen in those first few minutes.
So stimming is acceptable in our world. As long as he doesn't freak out the neuro-typical kids (the typpies (rhymes with hippies), as we like to call them) or their moms (usually more of an issue than the kids at this point), he can do whatever he needs to do.
Stigming, is the type of behavior that will make another five year old stop and stare. Flapping, twitching, flipping switches, EXCESSIVE spinning in circles, eating paper (I guess he's got a little goat in him), anything that will make another kid (or his annoying parents) stop what he is doing and start nosing around in Haydn's business, or worse, ask him what he's doing. (It's cool if the kids ask, but I usually tell the parents not to stare or they will catch what Haydn has and give it to their kids... They never seem to get the joke).
Haydn is pretty good at controlling his impulses, but he IS only five years old. This type of self control is extremely difficult, and as he gets older, some of these behaviors, particularly the wing flapping are popping up a little more, so we've been working on some anti-stigming moves. The basic rule is: "Keep it low and slow." By this I mean, he needs to try to keep his movements down near his waist, and try to control them enough to slow it all down. If he keeps it "low and slow," it probably won't be noticed as readily.
It's been surprisingly effective...
We are walking though the main concourse at the Bergen Mall and Haydn is clearly having a moment. He is jumping and spinning a little more than usual, and the wings are primed and ready for take off.
"Haydn, are you alright?"
"My ears are bothering me Daddy-o."
"Would you like to get out of here for a minute?"
"No!" God forbid we leave the mall.
"What should we do?"
"Do you like the lights in the old gym?" Whoops, lost him.
Suddenly, the wings are out and Haydn is cleared for take-off.
"Are you sure you're OK, Haydn?"
"I'm not leaving the mall!" There he is! Back in the conversation
"I'd like you to try to keep the hands under control if you can."
"Do you like the Hello-Goodbye song?" Excuse me? The Beatles?
"Love it. Why don't you try to make a fist and hold it down low, when your wings start to flap. I don't want you to accidentally hit somebody in the face and give them a boo-boo."
"OK, Daddy-o." No reaction. Still flapping.
Haydn is a good boy, and the last thing he wants to do is hurt another kid. I don't want make him too self conscious of his stigming by making a big deal about the actual behavior. I just want to find something that motivates him to keep things under control a little, without embarrassing him.
The crowd is buzzing and the wings are really a-flapping. I try to help calm him down again.
"Haydn why don't you try making a..."
He starts to jump and hop and appears to be ready to flap his way to ceiling. It looks like he is actually going to explode out of his skin. Then he just stops. He starts to talk to himself very quietly. Knowing Haydn as well as I do, he is probably running through the steps necessary to calm himself down. Or he could just be talking about fans.
He keeps talking quietly under his breath, slowly lowers his arms down to his waist, and locks his fingers together. He looks at me with bright blue eyes...
"Hey Daddy-o, I locked up my wings."
"That's terrific Haydn. I am so proud of you."
There you go. He does it once (pretty much on his own!), he can do it again.
I watch him walk with his hands locked up for a few seconds, hopping and skipping a bit, huge smile on his face. He slowly releases his fingers and...
The wings have been put to rest.
"Hey Daddy-o, can we go to The Mickey Store now?"
"Of course, anything you want kiddo."
Haydn, the wing tamer, and his very proud Daddy-o walk into the Disney Store to check out some toys. It looks like Haydn is starting to develop a better understanding of who he is and how his mind works. He is getting better at controlling his impulses, he is figuring out how to solve these problems on his own, he is growing up right before my eyes, he...
Rips a label off of a Buzz Lightyear suitcase, stuffs it in his mouth and starts to eat it...
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The Science Fair (Winter 2011)
"What are all these kids doing in my store?"
Haydn and I walk into The Lakeshore Learning Store, a store that specializes in toys that Haydn loves. Puzzles, art supplies, learning and science toys, all kinds of building toys, they have it all and they leave them out for the kids to play with. It's never too crowded, and since we go there so often, the whole staff knows Haydn. On Saturdays they usually have craft sessions, which keeps the other kids busy while Haydn checks things out and plays with the toys.
Today, however, is the Science Fair, and there are parents and kids everywhere.
Haydn is not happy about this. The store is usually pretty quiet, and Haydn can explore and play at his leisure. Today, his routine has been completely disrupted. The store is nothing like he anticipated, and there is very little chance of anything going according to his plan. This disruption of the status quo is exactly the kind of thing we want for Haydn. Routines are like a narcotic to him. Once he finds one he is comfortable with, it can be very difficult getting him to deviate from it. So we pretty much smash routines on a daily basis. It annoys him to no end, but in the long run he will be better off.
Of course, I had no idea that there was going to be a Science Fair today. Another one of life's happy accidents.
After a quick trip to the bathroom, Haydn decides he wants to check the back of the store for a little while. It is a technique he has developed to ease himself into an unpredictable or challenging environment. He likes to find a quiet place (usually near the back, or a bathroom) and start exploring, gradually working his way into the crowd. It does not take too long anymore, and it seems to help him control some of his more typical aspie behaviors (flapping, spinning, hopping, etc.)
He rummages through some boxes in the rear of the store and drags out a horribly uncomfortable, blue rock of a chair - faded vinyl, lumpy, stained and scratched up. I can't believe they have the nerve to put a price tag on the thing. Of course, Haydn loves this piece of vinyl nastiness. He settles onto his new throne and prepares to "make some decrees." (Thanks, Mr. Jim)
Haydn's decrees are powerful statements delivered in his "serious voice" (not much different from his regular voice, just filled with a supreme authoritative conviction) with a strongly pointed finger for emphasis. He is totally serious when decreeing, and will get the decree hand, "THE DE-CREER," if you will, right in your face.
Still working on "de-creer" etiquette...
The topics of his decrees vary: ranging from the fairly dull and boring, to the fairly dull and boring, but they are delivered with such panache, that for a brief moment, his observations about lights, fans, and bathrooms can seem as important as the state of the union address.
Well, at least they are to Haydn...
"Hey Daddy-o, that looks like my school calendar!"
"Look at the fish by June!"
"Those are compact fluorescent bulbs in the lights up there. Yes they are."
"Hey Daddy-o, don't go in the private room!"
"Daddy-o, I think a girl sings the song in the speakers."
"I think they have the space mobile here."
"I like this blue chair. Yes I do."
After about twenty minutes, feeling a little over-decreed, I decide it's time to check out the rest of the store.
Haydn is sitting on his awful blue chair holding the "school calendar."
"Haydn, would you like to go up to the front of the store and check out the experiments?"
"Yes I would."
He continues to sit and read his calendar.
"Haydn, it's time to go to the front and check out the experiments."
"OK, Daddy-o. Let's check it out." Captain Literal strikes again
Thus begins the long journey to the front of the store.
"Daddy-o, can we buy my chair?"
"I don't think so. It's a pretty nasty looking chair."
"I love this chair. Yes I do. I think we should buy this chair."
"Not today, Mr. Haydn."
"Is this the mister chair?"
"Let's forget about the chair and go to the front of the store."
"It's OK Daddy-o. Let's go check the front."
We try to work our way towards the front, but we must pause to spin a few globes and talk about where New Jersey and West Virginia are located. We simply have to check the solar system models out and talk about our favorite planets. He insists upon a quick check of the magnetic writing boards, then a little gear spinning, followed by a few minutes chatting up the staff (We come here quite often and everyone knows Haydn).
Everything I love about this store is preventing me from getting to the damn Science Fair. The toys are fantastic, and even I can't resist stopping and checking them out as we walk. I look away for a second and the little imp tries to make a sneaky retreat to the back of the store and his awful blue chair.
"Haydn. We are done with the back of the store. It's time to go to the front."
"It's OK, Daddy-o. You don't have to be mad."
Not sure where the 'it's OK' thing came from
"I'm not mad, I just..."
Am I really about to try to reason with this kid?
"Let's get moving. Walk with me please."
Finally, we get to the front of the store and the "Science Fair." There are three tables are set up with microscopes and magnifying glasses, magnetic experiments, a volcano... lots of cool stuff for a little five year old to destroy.
"Hey Daddy-o, what's in that water over there?"
"I don't know, Haydn. Walk over and ask that guy over there."
He runs over to the table, puts "the de-creer," right in the young man's face...
"Excuuuuse me! What's in that water?"
"That's called space..." Too slow, he's already on to the next table...
I stop him for a minute.
"Haydn. You can not put your hand in other people's faces. You have to keep it low, so you don't poke them in eye. A gentleman always keeps his hands low."
For some reason the gentleman thing seems to work
"It's OK, Daddy-o. Keep... The... Hands... Low!" Little mini decree...
I turn him loose and try to fade as far out of the picture as I can. I don't want to play any role in his peer play time if I can help it. He always makes sure he can see me, but I am hoping to otherwise be ignored.
He sets up at the next table and looks through a two-way magnifier.
"Wow! That's a great big spider!"
"Hey Daddy-o! That's a great big spider!"
"That's great Haydn. May I take a look."
"No. This is just for Haydn. Whoa! That IS a great big spider!"
Haydn observes and exclaims, exclaims and observes, and lets the whole store know of his discoveries. Suddenly he stops, sprints back to the first table, and whips out "the de-creer." Again...
"Excuuuuse me! What's in that water?"
"That is called space sand. Would you like to touch..." Still too slow... he's gone again
This is, of course the funniest thing ever. Haydn is laughing so hard he starts to spin and almost knocks over a sand box full of dinosaur skeletons. After the impact, he picks up a skeleton, turns to the boy next to him...
"This is a Styracosaurus fossil. It's very small. It's not a real fossil. Styracosaurus is a big dinosaur."
A couple of boys are now interested. He reaches into the sandbox and grabs another.
"This is a Dimetrodon fossil. Dimetrodon is medium. He is not really a dinosaur."
One of the boys grabs a fossil and Haydn tells him,
"That is a Brachiosaurus fossil. Brachiosaurus is a great big dinosaur. He eats green plants."
I am so proud of Haydn. Although he is not really engaging in a back and forth conversation with the other kids, (OK, more like he is delivering a lecture - but let me have my moment) he is relaxed, talking about something all little boys like, his eye contact is pretty good, and they are all loving it.
Class is in and Haydn is teaching the other kids about dinosaurs, basically running the sandbox. He looks very grown up to me right now. A big boy.
Then my Little Professor reaches into the sandbox, grabs a sieve, holds it up over his head and dumps it.
"Daddy-o! I made a waterfall!"
"That looks like sand Haydn. Be careful with that thing."
"It IS sand. I made a SAND waterfall! Yes I did."
Sand is flying all over the sand box, a little on the other kids, a lot on him, but amazingly not on the floor. He is still leading the way, (goodbye Little Professor - hello Mr. Imp) and has all of his recruits making sand waterfalls. Unfortunately, the other kids are a little more wild with their sieves and the cascades are starting to sand up the floor a bit.
Having stirred up enough trouble at the sandbox, Haydn suddenly drops his sieve, spins around and runs back to the first table. Again.
Here comes "el de-creer,"
"Excuuuuse me! What's in that water?"
"That is space sand. Would you like to touch it?" Quicker delivery. The kid is getting better.
Haydn cracks up laughing again. Apparently there is nothing funnier than asking some poor soul the same question over, and over, and over again.
He shuts down the comedy club for a few minutes and heads back to the magnifier table, where a girl, about two years older than Haydn, is looking at some slides. He wants to get in on the action and look at the bugs, but is not sure where to start. I consider coaching him a little, but I don't want to embarrass him in front of the other kids. Besides, the only way to get good at social skills is to practice, practice, practice.
"Excuse me girl, do you like the spider when it's big?" Awkward, but effective
"I don't like spiders. I think spiders are gross. Spiders scare me."
"It's OK. That spider is not a real spider." Kind of sweet...
"Would you like to look through the left side, while I look at the right one?"
"Yes, I would like to look through the left side."
"What's your name?"
"My name is Haydn. I like this great big spider." Still a little awkward - but awesome
"My name is Kelly. I think I like the bee better than the spider."
"Do you like the space sand?" uh-oh
"I don't know what space sand is, Haydn."
And he's gone. Back to the first table.
Again.
"Excuuuuse me! What's in that water?"
"That's space sand..." The kid finally loses it, the power of "de-hand" overwhelms him, and he laughs so hard his eyes tear up.
Haydn is laughing too, but notices that the guy behind the table has tears in his eyes. He stops laughing.
"It's OK sand guy. Don't be sad."
"Thank you. I'm not sad. I'm OK. You're just very funny."
Haydn stands there for a minute with a very serious look on his face, happy that the space sand man is OK, but clearly confused by the tears. These are the times when I wish I could sneak a peek into that little mind of his, and see how he processes things. To really get some insight into the inner workings of the Asperger mind. Maybe he is pondering the paradox of laughing with tears. Maybe he is putting that powerful intellect of his to work, trying to solve the riddle of human emotions. Maybe. But for now I can only wonder...
He relaxes after a few minutes, looks right at me, flashes that impish grin, then quickly turns away...
"Excuuuuse me! What's in that water?"
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Let's Go to the Movies (Part 1) (Spring 2010)
This is a story I wrote about Haydn's first trip to the movies. He was four years old, socially inept, crazy curious, and well into the early stages of full blown light fixture addiction.
We go to regular movies about twice a month now, and Haydn loves it. It took quite a few months of sensory-friendly movies with a timer and a lot of patience, but now he sits in his seat, keeps his voice down, and eats all of his popcorn.
But every journey starts with that first step into a new world...
I begin to feel the energy surge as soon as we walk into the lobby of the movie theater and encounter a larger than life Iron Man 2 display.
"Daddy-o! That's a great big Iron Man!!!"
"It sure is Haydn."
"Hey Daddy-o! Look at that great big Iron Man!!!"
"I see him, kiddo."
We walk to buy the tickets and I see the happy dance starting. This usually means there are lights, fans, or joy of joys - lights with fans, somewhere close.
One of the more unique qualities of a kid with Haydn's super power (Asperger Syndrome) is the way they can fixate on certain details and environmental stimuli that mere mortals may not find all that interesting.
Like lights, for instance...
I stop at the concession stand to load up on some theater food, and in the span of about four minutes I learn that "these circle lights are on," and "the square fluorescent lights are off." "The light outside is probably automatic," and several declarations that "This is the movies!" I hear about the girl's room and the men's room, and some room called "the private, great big bathroom with the lights off."
I finish paying and Haydn grabs Mommy by the hand and leads the way into the unknown world of "sensory friendly movies."
"Sensory friendly movies" are movies where the sound volume is turned down a bit and the lights are dimmed, but not off. You can bring your own food, and the kids can be as loud, fidgety, or spectrum-ish as they need to be. This is to make the movie more palatable to the extremely sensory-sensitive kids on the autism spectrum. I'm pretty sure the inventor of this noble concept never encountered a kid like Haydn. The "sensory-friendly" movie concept PLUS Haydn is like shark diving in a pork chop wet suit. It may work out for a little while, but eventually something extreme is going to happen.
We find a row to sit in, and settle down for the adventure ahead. The movie starts and Haydn is locked in. I'm sure the huge box of Sour Patch Kids (great idea by the way, giving a kid who leans towards the hyperactive a box of sugar-coated rocket fuel) helps to keep him in his seat, but I'll give the movie a little credit. Actually, the credit should really go to the "credits." Haydn is riveted by the opening and closing credits of a movie. He loves to watch words and numbers roll down the screen quite a bit... the actual movie... maybe not so much.
Now that the actual movie is ready to start, Haydn starts looking around the theater and, because the lights were DIMMED and not off (great idea people), he sees every light fixture in the room and begins mentally organizing his "things to check list."
"Hey Daddy-o!!!!!" Game on
Now, I don't know how many exclamation points are the standard for screaming at the top of one's lungs, but that's pretty much what we're looking at here.
"Hey Daddy-o!!!!"
"Yes, Haydn."
"There's lights on the sidewalk!!!!"
"Could you whisper please?"
"Yes." Whoops.
"Will you whisper please?"
"Hey Daddy-o!!" Same volume, only now he's got a little gravel and grit to his voice. He sounds like a four year-old Harvey Fierstein.
"Yes, Haydn."
"I need to check the lights on the sidewalk."
"Of course you do."
Now the game is afoot. It's time to start checking things. That's what Haydn likes to do. Check things. The only thing he likes to do more than check things, is talk about checking things. So he checks the lights on the sidewalk. These are the red lights that run along either side of the aisle, obviously installed so you can check things during the movie and find your way back to your seat. Up the aisle he goes, checking the lights on the walls, and talking about the circle lights in the ceiling that are not off. Once he gets to the door...
"Wow!! Look at that great big green light!!"
"Haydn, whisper please."
"That's an awesome green light!!!" Thank you Mr. Fierstein. Hey, at least he tries.
I finally lead the little checker back to his seat. He comes with no argument. As we quietly head back to our seats, I think to myself, - I have the greatest kid in the world (which I do). What a little gentleman, walking back to his seat with no fuss and doing exactly as his Daddy requests. For a brief moment I actually thought I had contained the situation. I am Haydn's Daddy-o: The Asperger Whisperer - Master of all four year-olds. Cool, calm, ready for anything that life presents...
So, here we are, back in our seats. Haydn is sitting with Mommy like a big boy, talking a little about lights, a little about the movie, and sitting still. Then he turned his head.
Luckily for the people sitting in the theater, Haydn was there to point out who was sitting behind us, and if you think back to where you were a couple of Saturdays ago around 11-ish, you probably heard the announcement as well:
"Hi family! Hi mother! Hi father! Hi boy! Hi girl! Hi baby! That's a great big family!"
And if you missed the first announcement, I'm sure you heard one of the many follow up announcements immediately afterward.
At this point I'm laughing so hard that parenting is out of the question. Daddy-o is done and needs a minute to regroup. Mommy takes over as assistant checker and she and Haydn go up the other aisle to check the awesome green light at the other entrance.
Now that the inspector has moved on, I have a few minutes to myself and all I want to do is stuff popcorn into my face and enjoy some of the movie. But it's hard for me to concentrate initially because all I can hear is the commentary coming from the back of the theater.
"That great big awesome green light is not on!!!"
"You better go buy a bulb!! Uncle Greg can fix that light!!"
"Hi girl!! Look at that awesome green light that's not on!"
"Hey mama, I need to go potty!!!"
"This is the theater room!!!"
"That's a sconce light!!" (I'm not even sure what a sconce is, so I defer to the expert)
Things finally quiet down from the back of the theater and I get my chance to relax and watch a few minutes of the movie. I put my feet up and grab a handful of popcorn when a young fellow in a very tight white turtleneck pops up a few rows in front of me and proclaims at the top of HIS lungs:
"This movie is called How To Train Your Dragon from Dreamworks!!! I like this movie!!!"
Of course you do....
To be continued...
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Let's Go to the Movies (Part 2) (Spring 2010)
This concludes the madness of Haydn's first sensory movie.
1 Inexperienced Daddy + 1 over-stimmed, super happy four year-old aspie =
"This movie is called How To Train Your Dragon from Dreamworks!!! I like this movie!!!"
It's bad enough that I'm missing the whole movie while I chase my son, Haydn, around the theater, checking lights, and exits, and lights, but now I have a new member of the "literal militia" swerving into my life and forcing the obvious down my throat.
"Hey Daddy-o! I have to go potty!" Of course you do.
Now we are off to the potty, which is always a treat: a new room with new lights, running water, possibly some fans, and hopefully, NO DRYERS. Haydn doesn't like dryers. He has super-sensitive hearing, and those little bastards really upset him.
We walk up the aisle, checking to be sure the circle lights are on, and the rectangle lights are not on. Awesome red lights line the aisles, and there is a bright green beauty of a spotlight waiting for us at the exit. Life is good. I have all the "stims" covered, I know what Haydn wants to check, almost before he says it. I have complete control of the situation.
"Hey Daddy, I see a fan up there!" Ok.
"Hey Daddy-o, there's a fan in that room up there!" I have a bad feeling about this.
"There's a light up there too!" And the walls to the trash compactor start to close in.
Haydn is of course, referring to: The Projector Room. A room with spinning reels, lights, fans, everything a little boy (not to mention a super sensory stimulation seeking Aspie), simply MUST SEE.
"That's the projector room, Haydn." Silence.
It feels like one of those magical moments developing between me and my son. He is curious about something, and I have all the answers. I can enrich his mind, and broaden his horizons. Can you feel the magic? Are the tears welling up?
"The projector room is where the..."
"Hey Daddy. That light up there makes the big TV work." Oh darn.
"Yeah, that pretty much sums it up kiddo."
"I need to check the Mojector room!" Can't say it. Knows how it works. Welcome to my world.
"Come on, kiddo, we need to get to the bathroom."
I'm stalling. I can see where this is going. The rest of the morning hinges upon my next move. If I play this right, Haydn shifts his focus elsewhere, and we can enjoy the rest of the movie (sort of). If I screw this up, it will be 45 minutes of non-stop "mojector room" negotiations.
We march to the exit, pausing for a moment to observe the loveliness of the green spotlight, and then it's out into the hallway.
As we walk to the bathroom, I realize that I have nothing to offer. No plan concerning how to keep Haydn's mind off of the "mojector room." I don't even know where to start. The "mojector room" is too much for me. It is simply too awesome for my simple Daddy powers to overcome. So, we'll finish up in the bathroom, and I will hand him over to Mommy. I will just run away and hide in the semi-darkness of the theater, and hope everything works out alright.
The potty break finishes up without incident (a few flicks of the light switch, but nothing major). We walk back to the theater, and Haydn starts to run.
"Slow it down Haydn. I don't want you to fall."
Just a few more seconds, and I'll be free. The last thing we need is a wipeout and some tears.
It's too late, the lure of the "mojector room" has got him. He can't stop now.
Arms flailing and flopping, he quickly closes in on theater 10.
That's it kiddo, keep running. Mommy is waiting, and then Daddy is off the hook.
Then he abruptly stops about half way between the two entrances.
Keep going big guy, you're almost there.
A huge smile breaks across his face.
He starts jumping up and down, flapping his arms a little. (The Stiminy Cricket Happy Dance)
Something has him so excited that he's actually losing control of his body.
He is standing in front of a narrow silver door.
"Hey Daddy-o! That silver elevator goes to the mojector room."
Uh-oh...
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What Did He Just Say????? (Winter 2010)
Here is a little report I wrote last year about Haydn's unusual use of language.
Enjoy...
I want to lighten the mood and talk a little bit about the way that Haydn wields the English language. No cheesy moments here. No heartstrings will be tugged. We are basically going to be laughing at a child with "special needs" (not my term) for a little while, so if you are sensitive about this type of thing - GO AWAY.
Sometimes it feels like Haydn started talking about five minutes before he was born. He just talks and talks and talks. Making speeches, barking orders, politely asking for things, making decrees. As soon as he thinks it... it's halfway out of his mouth already. He is dead literal in his thinking, and has very little concept of double or implied meanings in language. He has a loud, clear speaking voice, which allows his often painfully inappropriate comments to resonate through the air as clear as a bell.
* Let's go back about a year or so. The former BCBA from the school district comes to the apartment for a home visit. She and Haydn are working on one of his million tiny stimmies. She is a little less than slim. Haydn stops what he is doing and walks right up to her, puts his hands on her stomach and asks:
"Dr. S. Do you have a baby in your tummy?"
Luckily for me, I happened to walk up the stairs just in time to see this little show. I immediately whipped my cell phone up to my ear, faked a conversation, and laughed my butt off.
* Haydn does not look at things, or investigate a situation. Haydn thinks he needs to "check" them. Anywhere there is a room I don't want him to enter. There is a always a reason to "check" something.
"Hey Daddy-o. I think I better check the furnace room at Grandma's house."
"Hey Daddy-o. I think I need to check the gas tank on the car. Just a peek."
"Hey Daddy-o. I think it's time to check places."
* He is also a conversation speed bump. He has the incredible ability to stop a conversation dead in it's tracks.
"Haydn, how was your day at school."
"It was good Daddy-o." Off to a good start
"What did you do at school today?"
"School things." Still not too bad
"Haydn. Would you please tell me one of the things you did at school today?"
"I did my handsome writing. (That would be neat handwriting) Do you think the great big fans at Ikea are going fast? Noooo, they are not going fast. I think they are going medium. They go fast in the summer, but I think they go medium in the winter. Yes they do. Can I have some fruit snacks?"
Right... Must get fruit snacks...
* Haydn also has a very distinctive style when making a statement. He will make his decree, and reaffirm it immediately afterward, making it a Haydn Law, not to be questioned.
"I like Mr. Jim's awesome lights. Yes I do."
"I'm happy. Yes I am."
"I don't want to eat pork tonight. No, I do not."
* Haydn has recently decided to add some silly language play to his repertoire. Clever word play in Haydn's World generally involves changing the first letter of any word. And repeating it. Over and over...
"Hey Daddy-o. Where's Gommy?" Giggling...
"Excuse me. I don't know what that means."
"Where's Jommy, Daddy-o?" Laughing a little harder...
"Haydn, clearly I am not as bright as you are. What are you talking about?'
"Daddy-o, where's Dommy?" Roaring now, no chance of anything productive happening for a while...
You can see where this is going. Unless Mommy comes walking around the corner, or some coyote drops an anvil on his head, he will keep this up FOREVER.
* His wacky, literal mind always makes for a good laugh.
One night at dinner:
"Hey Daddy-o, can I have some ice cream?"
"You can have some as soon as you finish your bowl."
"Noooo. I can't eat my bowl Daddy-o. Only my pasta."
* Haydn also has developed a brilliant way of defusing a situation when he is caught doing something he should not be doing.
"Haydn. Why are you standing on that bed, on your tiptoes and reaching for the string to turn on the fan that I told you not to touch?!?!?!"
"It's OK, Daddy-o. You don't have to be mad."
Big smile. He knows he's got this one in the bag.
That's it. Every time. How do you argue with that?
How about this one...
Haydn is jumping on the couch. I told him not to (about nine times), but he is still jumping on the damn couch.
"Haydn!!!! What are you DOING?"
"Hey Daddy-o, do you know me?"
"I'm sorry, what was that?" Stay alert, could be a trap
"Do you know me Daddy-o?" Trying to use some kind of Aspie mind control...
"Of course I do, Haydn."
"It's ok Daddy-o. You don't have to be mad."
These aren't the droids we're looking for...
* Whenever Haydn sees something that he likes - he tells us that he needs it for his room.
"Hey Mama, I think I need that chandelier for my room."
"Daddy-o. Let's get a great big fan for my room."
"I think I need a wind turbine for my room."
"Hey Daddy-o, I think I need to get a new fridge for my room."
"I think I'm going to bring that waterfall home for my room."
* Haydn has a rather unique way of describing things that he encounters for the first time. When asked what he is doing, looking at, stimming on, his response is: "I never met this..."
For example...
Haydn and I are hanging out in the Target toy aisles. He is sitting on the floor with a baby toy. He is flipping the switches on and off (a little sneaky stimming) and laughing.
"Haydn, let's get away from the baby toys and check out some big boy stuff."
"It's OK, Daddy-o. I never met this kitchen toy before."
A new episode of Phineas and Ferb comes on, and Haydn is rolling around on the floor and laughing.
"I like this new Phineas and Ferb. I never met this one."
Haydn walks up to a new door. A door he is determined to open.
Most likely a door he is not supposed to open.
"Hey Daddy-o. I think I need to check this door. I never met this door."
* Haydn and I are out doing a little mall-ratting and he needs to go potty (incidentally, at what age does the cutesy potty talk stop and does the boy get to man up and take a crap?), we go to use the family bathroom. Haydn walks in, raises his left hand and makes this decree... at the top of his lungs, of course:
"I'm too big for the lowercase (kid-size) potty. I can use the uppercase potty and you can use the lowercase potty. Don't SIT on the lowercase potty Daddy-o. You will break it... you're too big. yes you are."
If you were to hear this through the door it would certainly paint quite a picture.
There are no secrets in Haydn's World.
* Any day, any place. Haydn and I are walking, there are other people walking too. He walks up to a random victim, and through his Aspie megaphone:
"Hey man, Do you like your big head!!???"
* When he was younger he would take a part of what I said and turn it into the literal opposite meaning in an attempt to confuse me and make me give in.
A little while became a big while, down became up, it did not matter what I said, if he wanted something else he would spin it and hit me with a quexclamation. (if you don't know quexclamation - welcome to Haydn's World - now go read some older posts)
* Christmas is coming. The Christmas calendar is up on a shelf - Not to prevent Haydn from eating the chocolate (he hates chocolate), but to keep him from taking the whole calender apart and eating the paper.
"Daddy-o, can I have that Christmas calendar?"
"No, Haydn. You can have it on December 1."
"Daddy-o, this is my calendar hand."
"I don't really know what that means little man."
"Daddy-o, why is my calendar hand empty?"
Riiiiight.... calendar hand
* For some reason when he is playing with his best pal Ellie he refers to her by the color of her clothes.
"I want to play the ball game with Pink!"
"I want to go to Miss Peggy's house to see Green. Yes I do."
At the Super Bowl party this year, Ellie was wearing a checkered dress...
"Hey Daddy-o, I'm chasing Blue and Red!"
* First thing in the morning. Well rested, Haydn bounces in and comes into bed to kiss us and announce the arrival of another great day. He usually follows his kiss with the morning's decree - pretty much first thing that pops into his head loudly stated for all to hear.
"Good morning Daddy-o. Good morning Mama."
"Good morning big guy. Please keep the blankets on."
"OK Daddy-o. Today is Saturday. I don't have school on Saturday. No school on Sunday. I might have school on Monday. Monday is gym day. Can we go to the movies now?"
All the while kicking the blankets off of his sleepy parents...
"Haydn. We are not going to the movies yet, please don't ki..."
"I don't want to don'tki." He starts to contradict me before I even finish talking
"I don't know what that means Haydn."
"Can I watch the Hoberman Associates video on the iPad?"
"Not right now kiddo."
"We going to the movies now?"
"Haydn, we are going to go the movies later."
"Later today?"
"Let's go make breakfast Haydn."
"It's OK, Daddy-o. You don't have to be mad."
* Haydn will, of course, spend as much time as possible discussing fans, fans, and more fans. It's a bit of an obsession, so we have to try to keep it under control. (At least we try...)
We'll pick up this conversation after a solid ten minute discussion about Grandma's fans...
"Haydn, I don't want to talk about fans right now."
"OK, Daddy-o."
"Hey Daddy-o, do you love Grandma?"
"Of course I do."
"Can we go see Grandma on Sunday?"
"I'll call her later and find out."
"Later today??" No concept of time, but that's a story for another day...
"Yes, Haydn. Later today."
"Do you think Grandma likes her kitchen fan on?"
There you have it folks - back to the fan... Six degrees of fan-versation.
* It can be very difficult to get an accurate description about his day from Haydn. Questions are answered on occasion, but other times they just give him an excuse to start talking about what he wants. But one of the interesting things Haydn does is have little conversations with himself. It is a sneaky way to get a little peak into his life. If you listen closely, you can pick out the facts and learn quite a bit about his day.
"I like lowercase m better."
"Today we are going to do lowercase m."
"Lowercase m is better."
See.. Did a little letter m stuff in school today
"Did I run fast in my sweats? I did. I ran fast in my sweats in gym in the morning. I run fast in my sweats on Friday too."
Gym today, good to know
"Why do I like the Hoberman Sphere? I like the Hoberman Sphere because. I. Like it. I think Daniella is going to be at Liberty Science Center. Noooo, Daniella is not going to be at Liberty Science Center. There is a wind turbine at Liberty Science Center. Yes there is. Did I turn off the color lights in the girls dressing room at Nordstrom's? No I didn't. I think I did. I like my Hoberman Sphere. Yes I do. It gets big."
What we learned here is Haydn wants to go back to Liberty Science Center, he has a little bit of a crush on some chick named Daniella, and the little bastard killed the lights at Nordstrom's when I wasn't looking. Oh, and he still likes his Hoberman Sphere
Takes some time, but with a little work anyone can speak Haydn-ese.
Before we leave, I would like to present the Gettysburg Address of awkward, inappropriate comments.
Haydn, Mommy, and I are visiting his new kindergarten classroom on back to school night. We get to meet Mr. Flynn, all the classroom aides, and the parents of some of the other kids in the class. We arrive a little early, just in case Haydn feels the need to check the bathroom, or the lights, or the office..., but I learn that when in school, Haydn is all business. He listens intently to his teacher when spoken to, and follows directions perfectly. He is on his best behavior.
While I am talking to another parent, Haydn walks up to one of the other moms and asks...
"Do you like your brown face?" ???????!!!!!!!!???????!!!!!!!!
Silence.
Painful, awkward silence.
"What did he just say?"
I am too busy holding my breath and trying not laugh to do anything to help this situation. Luckily Mommy steps in and tries to put out the fire.
"He said he likes your brown shirt."
That's it? We're going with 'he likes your brown shirt?'
"Oh. OK."
I can't believe she bought it.
Haydn's wonderful perspective and creative use of language makes every day a little funnier and more interesting than the day before. He talks around the topic, inside the topic, sometimes he just grazes the topic, and other times he just barrels through the topic. I never know what he is going to say next. His language is getting more pragmatic-ish and he is getting better at conversations every day. It is a lot of fun chatting him up now. I imagine he will stay unpredictable and off the wall for a little while longer. So I will enjoy the madness while it lasts. As long as he is not self-conscious about it, I could care less how twisted up and goofy his language is. He works very hard, and I know he will overcome this challenge, just as he has overcome every other one he has faced in his young life.
Because Haydn can do anything he sets his mind to. Yes he can.
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Speech Therapy with John, Paul, George, and Ringo
One of the most common challenges (at least according to the experts) for a child with Asperger Syndrome is developing an understanding of the subtleties of communication. I can't speak for other children, but Haydn definitely has trouble with basic conversation skills. He has always asked questions and made little speeches (mostly about fans and lights), but conversation is a real challenge.
His initial diagnosis included "Pragmatic Language Impairment," which of course means that he is lacking a certain prag-ness about his language. (everything has a fancy name here on the autism spectrum) He has difficulty interpreting the meaning of what is being said. The hidden meanings in statements, or any implied meanings, simply vanish into the ether. He's not getting it, and he's not looking for it. Yet...
One thing you will notice right away when having a little chat with Haydn is that he has a tendency to take everything at it's most literal meaning.
The family is taking a drive (probably to a mall), and Haydn is holding a cell phone to his ear.
He is happily having a little conversation with himself, so of course, nosy Daddy interrupts his fun.
"Haydn, who are you talking to?" (Just leave the kid alone, he's having fun...)
"I'm talking to you Daddy-o." (Right... I deserve that)
Every day, three or four times a day.
Haydn also has a tendency to prompt himself in order make a statement. It's his way of initiating a conversation without actually initiating conversation. A sneaky little technique he uses to get his thoughts out.
"Do I like the lights in the Old Gym?"
"Yes, I do. I like the lights in the Old Gym."
"Is that Uncle Keith's truck?"
"Yes it is. That is Uncle Keith's truck."
Haydn's inability to start and maintain a conversation is difficult for all parties involved, but one thing that is particularly frustrating is his inability to follow up his primary question with another question that is even remotely "on topic." The first question is the one you might be able to answer. Trying to keep the conversation alive after that takes a little practice:
"Hey Daddy-o. Are we going to Liberty Science Center today?"
"Probably not Haydn."
"Do you like the old gym or the new gym?"
"I think I like the old gym better."
"Hey Daddy-o. Are we going to the Liberty Science Center today?" (A little echolalia, for all those keeping score)
"We already talked about that Haydn."
"Does Xena have a loud bark?"
"Not that I noticed."
"I like the awesome lights at Mr. Jim's house."
Haydn runs away, leaving me to pick up the fragmented pieces of my sanity.
He also has his "scripts" - statements or questions that he has learned how and when to use in conversation. He may not be 100% sure of what he's saying, but he always uses them in the appropriate situation, so unless you know him, you would never be able to tell that he's faking it.
Every day, Haydn has to struggle with his language's lack of praggy-ness. It prevents him from having conversations with the kids at school, it makes it very difficult to find out why he is crying or how he may have gotten hurt, simply getting the facts about anything can be a real challenge. It is a huge speed bump right smack in the middle of his social development. Almost every conversation is a tug of war.
Unless, of course he happens to be listening to The Beatles.
Every Sunday morning Haydn and I go out to breakfast and then head out to the mall, or the park, any place with other kids, in order to have some fun and get some social skills practice in, and we listen to "Breakfast With The Beatles" on the radio or a Beatles CD while we are driving, and... (here comes the cheese) somehow the music has managed to reach through the fog and connect with him in a very powerful way.
"Strawberry Fields Forever" is the first favorite song, followed by "We Can Work It Out," then, "Here Comes The Sun," "I'm Looking Through You," and on through the catalog.
This very strong connection to The Beatles and their music appears to have inspired Haydn to work harder on his conversation skills, and a new dynamic has developed between us during our car rides.
"I'm A Loser" starts playing.
"Daddy-o. Who wrote this song?"
"John wrote this one."
"What's this song about?"
"I think John lost his girl and he's singing about how he feels."
"Is John sad, Daddy-o?"
"Yes he is Haydn."
"Why did the girl leave John?"
"I think he wasn't as nice as he should have been."
"Is Ringo playing the drums?"
"Yes he is."
"Is that the high hat?"
"Sure sounds like it."
"Is George standing in the middle on this one?" (he's seen a few videos, and knows where the boys stood on stage)
"Probably, Haydn."
"Is the Old Brown Shoe song coming next?"
"I'm not sure. Is that the next song on the CD?"
"Yes, Daddy-o. I like the drums on the Old Brown Shoe song."
And so on, and so on, and so on...
Simply Prag-tastic!
These listening sessions are turning into a conversation workshop for him. They have become a forum to apply everything that he has learned in speech therapy, and at home, about emotions, proper conversation technique, language usage, eye contact... etc. He is also learning a little about music and instruments, and that pretty much every song The Beatles ever wrote is directly or indirectly, about a girl.
Haydn has begun to show a little more conversational aptitude elsewhere as a result of his work with The Fab Doctors, but like everything else, it's a work in progress. It's a small breakthrough, but I know how fortunate we are to have any breakthroughs at all.
We've changed the play list (six months straight of The Beatles in the car can wear on one's sanity) since this all began, Haydn is really into Queen and The Killers at the moment, and he is following the same line of questions about their songs as well.
He has also begun to generalize what he has learned and little conversations and chit chats are starting to pop up all over the place.
So always remember to keep your eyes, (and in this case your ears) open as we all stumble and bumble our way along the spectrum...
The next major breakthrough may be only a song away.
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DJ Dance Party (Winter 2011)
Here is a little story I wrote about Haydn's first school dance...
It's Friday night and we are getting ready for "DJ Night" at Haydn's school. When one has a child with an Autism Spectrum Disorder, pragmatic language disorder, sensory processing issues (hearing in particular), and basically no clue how to react in a charged social environment, what is the best plan for Friday night? Take him to a dance party in the school gym, of course.
Haydn is a member of a new autism education program in our school district. He receives all his therapies (speech, physical, o.t., social skills, etc) in class with the other kids on the spectrum and he has been mainstreamed (with an aide) into general ed. music, art, gym, lunch, and recess. He is doing very well according to his teachers, and has allegedly made some "friends" in these classes.
I put friends in quotes because I have not met any of these kids, and I have seen him with critters his age before. He's not much for the conversation game yet. So I often wonder what type of relationships, if any, he has with these kids. When I ask him who his friends are, I usually get:
"DaniellaBriannaRyanMottyAunchMichaelEmilyAllegraGrace"
I'm sorry, did I hear an AUNCH in there?
I recognize the names of a few of these kids, but the others could be anyone. For all I know, he could be referring to some multi-headed creature they keep locked in the janitor's closet and feed left-over meatloaf.
I know that he spends quite a bit of time with the general ed. students, but, "DaniellaBriannaRyanMottyAunchMichaelEmilyAllegraGrace," is all I'm getting right now, and it just doesn't tell me much. So I am hoping a few of these kids show up tonight, so I can see Haydn interact with them, and maybe meet a parent or two.
Haydn is bouncing around the apartment, full throttle and ready to roll, but Mommy and I are not quite ready yet. In an attempt to buy a few more minutes, I ask him to get some clean clothes for the dance. Pick out some good “DJ Dance Party Clothes.” He runs into his room and grabs tonight's ensemble: Spiderman shirt, camouflage pants, brown sock, white sock. In about eleven seconds he gets dressed, puts on his jacket and runs downstairs to the door.
"OK, Mama! OK, Daddy-o! I'm ready for the DJ Dance Party!"
"Let's go! It's time for the DJ Dance Party! Yes it is!""
We arrive fifteen minutes early, so he can check out the school and get acclimated to his surroundings. The primary concerns for the evening are the noise, any flashing lights they may have set up, and the hyped-up mass of kids. I don't want him to get over-stimmed and spin himself into the ground, or flap his way through the ceiling. The good thing about it being a dance party, is that most of his Stiminy Cricket stimmed-out behavior looks a little like dancing. I think it would be hilarious if he could turn this party into a spectrum "Soul Train," and get the whole gym spinning and flapping to the beat.
I also want him to see the gym being used for something other than gym class or assemblies. He needs to be constantly reminded of the flexible nature of his reality. No room, person, or place has a singular definition or use. Variety and change are critical. This lesson needs to be hammered into his skull, never to be forgotten.
Haydn is pretty fired up to be in school at night, and wants to show Mommy and me all of his classrooms. The kid has about ten teachers - this could take all night
"Hey Daddy-o, I think I need to check Miss Pikel's classroom."
"Not right now kiddo, I need to pay for your ticket."
"My DJ Dance Party ticket? OK. I think it's time to check Miss Pikel's room."
"Don't worry about that right now."
"OK, Daddy-o. I think I need to go potty."
"Sounds good - let's do it."
We enter the bathroom. HIS bathroom.
"Hey Daddy-o, the soap is on the left of my sink. It has a cup under it. They fixed the lights in my bathroom. Yes they did. I am going to go in my stall."
"OK, Haydn."
He comes out of the stall, pants up but a little twisted, washes his hands, and dries them on my shirt.
One of the many little jobs for Daddy-o in Haydn's World
"Do NOT touch my black light-switch Daddy-o. The lights stay ON in my school bathroom."
"Alright Haydn. I'll try to resist."
The muffled thump of dance music is forcing it's way into the hallway. We have one more little piece of business to attend to, then we can enter.
"Haydn. I have a glow bracelet that you are supposed to wear when you go into the gym."
"Not the boy. The boy does not need a bracelet. No."
"Fair enough. Will you hold it, and show it to the lady at the door?"
"OK Daddy-o. Let's go to the DJ Dance Party."
Haydn waves the bracelet over his head as we walk into the gym and the wall of sound stops him dead in his tracks. He stands on the black out-of-bounds line of the basketball court... clutching the glow bracelet in his hands at his waist, and starts looking around. I am standing behind him and I can't see the look on his face, but he is not flapping his hands or covering his ears, which is a very good sign.
Mommy and I take a few steps back and let him check out the room on his own.
The lights are dimmed, and there is a deejay set up under the basketball net on the right side of the gym with flashing colored lights (stim-stimmy), and a giant speaker on either side of his console (could be problematic). Under the left basket are several tables with bottles of water, snacks, and extra seating. The rest of the basketball court is a maelstrom of spinning, twirling, leaping, and screaming kids - all trying to out-dance, out-jump, and basically out-crazy, one another.
All, except one. One little blue-eyed boy who is standing ramrod straight like a palace guard, two steps INSIDE the black line now - watching everything.
I walk over to take a quick check on my little soldier.
"How's it going kiddo? You know can jump around and do anything you want at the dance party."
"I'm OK, Daddy-o, you can get out of here." And he pushes me off the dance floor.
That's a good enough answer for me. He is quietly inching his way closer to the other kids, at his own pace, in his own time. I have seen Haydn like this before. He is determined to make this work, and he wants to do it on his own.
One of the things that amazes me, is that he still has not put his hands over his ears. Not one time. Lady friggin' Gaga is smacking his ear drums around, and he has not made one attempt to block it out. He continues to work his way towards center court, and two boys stop their chase-me-dance game for a second and say hello to him. He doesn't say anything, but looks at them and smiles, they smile back at him and run off. Friends! Haydn watches them leave, then quietly resumes the palace watch.
I sneak over to check on him once again, and he gives me his glow bracelet and pushes me off the court again. As I walk off the dance floor, I look down at what Haydn has just handed me. It is a bracelet in name only. Haydn has crushed, pinched, and twisted it into knots, all the glow juice squished into one end. Poor thing never had a chance.
He has not shown any outward signs yet, but I guess it would be safe to say that he is dealing with some stress...
I cram the bracelet carcass into my pocket as a friend of mine walks over. She is here with her children and working as a chaperone. She shows me her kids and I point to Haydn.
"That's my little man in the red shirt..."
"Oh, I know Haydn. I love that kid so much. Your son is my favorite kid in the whole school."
Apparently she worked with him in pre-school last year. She tells me how much she loves him, and all the great things he does at school, and how much fun she had working with him last year. A couple of minutes later his lunch aide comes over and starts giving me a Haydn update. She tells me he loves to eat with the rest of the kids, and he eats everything they put on his plate...
Not much of that going on at home, but that's another story for another day
While I've been listening in on the February meeting of the Haydn Fan Club, Haydn has made his way into the shallows of the crowd (hands locked in front, still standing at attention - ears still uncovered), and the deejay starts playing the "Chicken Dance." Haydn loves funny noises, and as soon as the song starts playing, he starts laughing. Mommy tries to get him dancing, but he's too busy laughing. The two of them have a blast and he only gets a move or two down, but is a failure to learn the "Chicken Dance" really such a terrible thing?
Luckily, (I hope you can feel the sarcasm intended here) it's time for the YMCA. The horns start wailing, the drums start thumping, and another generation falls victim to the hypnotic spell of the Village People. Mommy tries to teach Haydn the moves, and he starts doing a little Y, a little M, not so much C and A. While he and Mommy are YM-ing, the mother of one of his friends walks up to me.
She introduces herself and informs me that her son and the kids in the class really like Haydn. She says that her son told her that when Haydn come into the class it "gets more fun."
So he IS making friends. He may be a little different than they are, but since they are meeting him at at such a young age - Haydn will always be Haydn to them. They have accepted him for who he is. Since it is my feeling that the socializing of Haydn and the development of his social skills are THE MOST IMPORTANT GOALS to accomplish in school, this is like a straight A's report card to me. The academics come easy enough to him. I just want to get him out there with his peers - let him fail, let him succeed, it doesn't matter, just give him an opportunity to at least TRY to hang out with the rest of the kids. That's when the real learning happens.
My moment of inner Daddy-o happiness is interrupted by the deejay's booming voice:
"I want all the kids to get into lines by grade!"
Kindergarten in front, second row is first grade, and so on. I guess it's time for some kind of "slide" dance. boogie woogie woogie...
As the kids scramble to their spots, Haydn stands guard right smack in the middle of the dance floor and looks around the gym. He seems to be a little lost. I walk over, intending to lead him to the front of the deejay booth, and I hear...
"Haydn, come on up here with us."
"Come on Haydn, the kindergarten kids have to be up here. You can stay with us."
Three little girls reach out, take him by the hands, and bring him into the front line of kids. I walk away (before I get pushed), and look over my shoulder at my smiling son and his friends. He stays with the girls for the whole song, does none of the dance moves the deejay instructs him to do, but jumps up and down a little and never stops smiling. The kids all groove together until the song is over, then scatter. Haydn backs it up a little, and resumes his post in the middle of the dance floor.
Haydn spends the next hour jumping and dancing amongst the kids. Mommy joins him for the participation-type dances and teaches him the moves, then he retreats for another shift at the palace gates. He stays right in the middle of everyone, NEVER puts his hands on his ears, and NEVER leaves the dance floor. He does not look odd, or weird, just a little militant from time to time.
The deejay keeps the party going, each grade gets a snack break, and Haydn has stayed longer than I ever imagined he could. After the last snack break, mister deejay decides to split up the gym and have a little "We Will Rock You" singing contest. Haydn loves Queen, so I expect this to be fun. The kids are supposed to clap and stomp to the beat and sing the chorus. It is going to get loud, so Mommy and I both stay close. The song kicks in - STOMP STOMP CLAP... STOMP STOMP CLAP... "Buddy you're a boy, make a big noise..."
"Hey Daddy-o. I hear Freddie singing."
"That's right Haydn."
"Where's Brian?" Brian May, Queen's guitarist - in case you didn't know
"The guitars are coming. Listen closely towards the end."
The gym is getting louder and louder. Haydn is enduring, but that's about it. He looks pretty frazzled, but still holding it together. The guitar rips in at the end of the song and he flashes a weary smile at me.
"There's Brian, Daddy-o."
The song ends, the shouting is over.
Then mister deejay decides to try it one more time.
Good stuff, thanks for nothing mister deejay
STOMP STOMP CLAP... STOMP STOMP CLAP... "Buddy you're a boy, make a big noise..."
Unfortunately, a thirty second guitar solo is not going to save us this time. I can see the first of the tears, peeking out of the corners of Haydn's eyes. Mommy and I make the move.
We sneak in, and lead him out of the line. He is crying, and looks totally wiped out. It's like the entire effort and weight of the evening has finally caved in on him. We want to get to a spot where he can have a little privacy. We kneel together in a corner, and I offer him a solution.
"Haydn, would you like to go to the bathroom so we can calm down a little. Turn those tears off."
"The kids were shouting Daddy-o. They were VERY loud."
"I know Haydn. Would you like to get out of here for a minute?"
"The kids were VERY loud."
"It's OK, Haydn. They were bugging my ears too. Do you want to take a break?"
"No Daddy-o. I want to stay right here." What can I say, the kid's a beast...
"OK, Haydn. Let's turn those tears off."
He grabs my thumbs and starts squeezing. The palms of his hands are soaking wet. I realize what he has been doing all night, why he has been standing guard on the dance floor. He has had his hands locked up in front of him so he would not flap them, stim with them, or cover his ears.
He takes a deep breath in and blows it out. Another one in, another one out. "Blowing up the Balloon." He calms himself a little, and he turns off the tears. He looks over my head at the rest of the kids and let's go of my hands.
"OK, Daddy-o. I'm alright. Yes I am."
Mommy gives him a little kiss, and he runs back to his post on the dance floor. It took the length of one song. He is exhausted, but not ready to give up the party yet. We are coming into the home stretch, about fifteen minutes to go. Haydn is back out with the rest of the kids, bopping and guarding his way to the finish line. The party is almost over, and mister deejay announces that he has received a lot of requests for a song from a rather popular teenage pop star.
Having said that, he promptly serves up a steaming pile of Bieber for the kids to digest, and...
Haydn runs across the dance floor to Mommy and me.
"OK, Mama. OK, Daddy-o. I'm ready to go now."
We grab our coats and walk to the door. A couple of his friends run over before we leave, and say goodbye. He smiles at them and (with a little prompt) says goodbye back to them.
We put on our coats and walk out of the gym. As we are walking, I reflect back on the evening for a moment. Haydn did a remarkable job tonight. His will-power and determination, the incredible inner strength he possesses, carried him through an extremely challenging situation. The intense sensory barrage of dance music, kids screaming, flashing cameras, pulsing deejay lights, twirling glow sticks, did not diminish his resolve, could not defeat him, would not make him give up and leave the dance party.
In the end, it was really only one thing that drove Haydn out of the gym...
One thing that put an end to the DJ Dance Party...
One thing more powerful than all of the sensory challenges and difficulties of the evening...
One thing even more powerful than the autism spectrum...
That one thing was...
One crappy Justin Bieber song.
|
A Little Reality Check (Spring 2011)
Here is a little story I wrote last spring about fun - Haydn-style
Haydn and I are going to the local Burger King for lunch. Our Burger King is pretty small and rarely crowded, but has a play area that usually has one or two kids climbing around in it. My goal, when Haydn and I go out on one of our adventures, is to get him into an environment where he can interact with other kids. He works hard on his social skills in school, and these little play areas are a perfect place to test out what he has learned.
Today, we are walking into some "end of birthday party" chaos, and Haydn seems a little intimidated... For about ten seconds.
"How does it look kiddo?"
"It's crowded Daddy-o. There's a lot of kid traffic in there."
"Would you like to eat first?"
"I think I want to eat in the play area. Let's go."
He runs in, puts his shoes into a shoe cubby - one shoe on the left, the other all the way on the right. He shoves a handful of fries into his mouth and runs over to play. This particular play structure has three levels. Level one has two entrances. One the left, where kids can climb up to the other two levels, and work their way across to the rocket (lower level) and fire truck (upper level) play stations. The entrance on the right is a red tunnel that takes you back to the entrance to the rocket, and has a series of big steps that lead up to the other levels. There is also a small step down that puts you right in the corner on the floor.
Haydn gets into the red tunnel and hangs out for a little while.
"Hey Daddy-o! I'm in the red tunnel!"
"I can see that. Do you like it in there?"
"I love the red tunnel. Yes I do!"
"That's great Haydn. Why don't you climb up to the fire truck and check things out up there."
"I think I'll stay in the red tunnel for now."
"Sounds great."
I return to my table to eat my 5000 calorie lunch. The table is in the same room, but just around the corner of the play area. I have a partially obscured view of Haydn, but I can see and hear him, and he can't see me. If he can't see me, he will direct his attention onto the kids, (probably the lights too, but hopefully more on the kids). I don't want to have any influence on his behavior. There are three kids playing monster (pretend play - not one of Haydn's strong suits), chasing each other all over the place, and one kid (Haydn) hanging out in the red tunnel.
"OK, it's your turn to be the monster. Run!!"
Haydn laughs at the game, but does not seem to be too interested in getting involved. He sits in the red tunnel, peeking his head out every once in a while to check on the action, but never comes out. The kids chase each other down the left side of the play structure and head for the red tunnel.
Haydn sees the kids coming, and with a big smile, greets them.
"Hey guys. Do you like the lights in the Burger King Play Area?"
I guess we need to work on his conversation starters a little bit
"Look out. There's a monster chasing us!"
"I like the lights. Yes I do."
"We have to hide! The monster is coming!"
They push by him and crawl into the depths of the structure. Haydn stays behind in the red tunnel, talking to nobody in particular.
"Guys! Hey guys. What are you doing guys? Come see me!"
The kids chase each other through the upper level of the play area, and my son stays in the red tunnel, watching, and talking to himself. The Great Burger King Monster Chase goes up, goes down, and finally out of the structure again. The kids change monsters and head toward the red tunnel. Haydn sees them coming and leaves, crawling into the lowest, most isolated part of the structure.
"Guys. Hey guys. What are you doing guys? Come see me!"
Every time the kids fly by, Haydn sits in his corner...
"Guys. Hey guys. What are you doing guys? Come see me!"
The game goes on and on, for about twenty minutes. The kids chasing each other up and down through the structure and past Haydn who is sitting in the corner by himself. Round and round they go. Three happy little kids appear to be having a blast during the rowdy monster chase. Except for Haydn.
For the first time in a very long while, I feel sad for Haydn. The kids are running around, laughing, having a grand old time, and he is sitting in the corner by himself. I peek through the rocket, and I can just about see the back of his head. He looks so small and lonely, sitting in his little hideaway, calling out to kids that he just can't seem to connect with. I decide it's time to go rescue him from this social train wreck I have thrown him into. I walk around the corner towards the red tunnel and I finally get a good look at him.
He is sitting in the lower recesses of the play area, and he is sitting by himself, but he is far from sad and lonely.
He can't see me yet, so his attention is still focused on the monster chase. I try to stay out of his line of sight. I have ruined many great moments for him by getting involved when I should just stay out of the way and mind my own damn business. Every time the kids fly by, he greets them with a huge smile and his "Hey guys..." greeting. Every time he talks, the closest kid stops for a second and smiles at him, he smiles back, the chase continues, and Haydn turns away laughing.
I quietly retreat back to my table.
Haydn is doing fine. There is a reason that the monster chase goes by his little hideaway. The kids appear to have chosen this particular path because it leads them past Haydn for a mid-chase laugh. It's a perfect situation. Haydn can stay outside the madness, yet still be a part of it on his terms. Instead of feeling sorry for him, I should be proud. He has found a way to get into the mix, to be a part of the game, with no help or guidance from me or anyone else. He is happy to be in the room with the other kids, and he is saying all the right things.
And his Daddy-o is an idiot.
I want to step outside for a minute and slam my head in the car door a few times.
For some reason, today I have spent too much time looking at the other kids and not enough time watching my son. While the rest of the kids are having fun playing monster chase, Haydn is hanging out and doing his own thing. And thoroughly enjoying himself. Haydn has a different concept of fun, based entirely upon HIS perception. Haydn will show me what he needs through HIS behavior. If Haydn looks happy, that means that he is happy. What he needs to be happy may not be what I need, or what I think he needs, or what some other kid needs. Just because I think that something will work for him, does not necessarily mean that he needs it. Haydn's social challenges and difficulties are not the result of a sudden loss of understanding and comprehension. This is who he is, and who he has always been. He does not know any other way. His perception is filtered through his Asperger lens. The neuro-typical kids he tries to play with are a reference for him, not a template. A social skills barometer. Every time we throw him into the mix, we can see where his strengths and weaknesses lie, and begin working on them. That's it. I don't want my kid to be like your kid. I just want him to be able to hang out with your kid (with as little flappy, stimmy, spectrum-type stress as possible).
Haydn is not broken or defective, and he does not need fixing. As far as Haydn is concerned, his quirks are the perks. Haydn's unique perspective is the magic ingredient that makes Haydn who he is.
|
The Track Meet (winter 2011)
Another adventure from last winter:
I decide that Haydn and I are going to go to an indoor track meet.
That's right, I said "indoor track meet" - High "echo-ey" ceilings, fluorescent lighting buzzing overhead, the cacophony of chattering teenage runners, screaming coaches, the glorious organized chaos that IS indoor track. I am going to take my five year old son - perhaps you've heard of him - the little guy with Asperger Syndrome and sensory processing disorder (supersonic-sensitive hearing, among other things) into this maelstrom of noise and excitement.
The two of us drive to the field house and park the car. There are school buses everywhere. Big yellow school buses. EVERYWHERE...
"Hey Daddy-o. That's a great big yellow school bus!"
"I see it Haydn."
"My school bus is little."
"I know Haydn, just keep walking please."
"My school bus is yellow like that great big one!"
"Thank you for sharing that with me buddy."
"The buddy rides a little yellow bus to Berkeley School."
"Oh does he?"
"That is a great big yellow bus. Yes it is."
"So it is."
Seems to have a certain fascination with the obvious
"I like my little bus Daddy-o. Yes I do. I like my little bus. I don't ride a great big bus."
"I like your bus too. Time to change the subject. Let's talk about something else."
"OK, Daddy-o. Do YOU like those great big yellow buses?"
"Haydn, enough about the buses please."
"It's OK, Daddy-o. You don't have to be mad."
"I'm not mad. I just don't want to talk about the buses anymore."
"Does the track meet room have lights like the Old Gym?"
And the lights make their first appearance of the evening...
We walk into the field house, and my very excited, slightly over-stimmed little partner heads right over to the maintenance closet.
"Hey Daddy-o, is that the janitors closet?"
"Looks like it."
"I can't go in there. No I can't."
"Great. Then why did you run over there."
"It's OK, Daddy-o. You don't have to be mad."
We walk down the hall and around the corner, and BAM!! Haydn stops dead in his tracks. This is going to be hard room. The field house has a high, arched ceiling, and coaches and athletes scattered all over the infield. They are running the sprints - hurdles on one side of the track and the 55 meter dash on the other. That means a gun is firing about every minute or so, one right after the other. I forgot about the damn guns...
Kids are stretching and jogging, all the while talk, talk, talking. There are cheering parents, screaming coaches, all the ingredients necessary to make for a delightfully overloaded, sensory experience. When Haydn encounters a hard room, as we call it, he likes to slowly work his way in, checking out his surroundings and scanning for "friendlies."
"Friendlies" are fans, lights, bathrooms, a familiar face, anything that he can focus on while he gets himself acclimated to the room. He finds something he likes, we talk about it a little, and move on with our day. This is a coping mechanism that he has developed over time and it is very effective. As long as we are patient, Haydn can handle just about any situation.
"Hey Daddy-o, I think those are fluorescent lights in the chandeliers up there."
Our old friends the lights, always there when we need them
"Why do you say that Haydn?"
"Because they look like fluorescent lights." Right...
BANG!!!
Haydn almost jumps out of his skin, starts talking a little faster.
"Hey Daddy-o, there are two bathrooms over there. The boys room is on the left and the girls room is on the right. I use the bathroom on the left and the girls use the one on the right."
BANG!!! This gun is going to be a problem
Another big flinch, with a hop, jump, and a little hand flap. Haydn balls his hands up into fists.
"Hey Daddy-o. Do they have bleachers here?"
"They used to."
"Hey Daddy-o, I didn't cover my ears! I am very brave today."
"I am very proud of you Haydn. You know, if you don't like this place, we can come back next week and try again."
BANG!!!
Flinching, Haydn looks straight ahead and says:
"I think I better go in the track meet room and find Tyler."
"OK, let's do it."
We walk across the track, and Haydn has my arm in a vise grip... head tilted to the right to cover one ear, the left hand cocked and ready to cover the left ear. I scan the infield for Tyler, hoping to get this madness over with quickly...
"I see Tyler."
Off he goes. Running through the crowd of stretching teens, Haydn barrels towards his cousin.
BANG!!!
He jumps in the air, head tilted for ear protection, never breaking stride, until he plows straight into the middle of Tyler's team. Most of the kids are stretching and warming up, and Haydn settles right in the middle and starts doing his own version of warm-ups. Everything the big kids do, he tries to do. He tries to touch his toes. He sits on the floor and grabs his feet. One girl lifts up her right leg and grabs the foot to stretch out the quads, so Haydn bends over, grabs his right leg...
And does a face plant right into her gym bag.
"Whoa. I wiped out!"
"Are you alright big guy."
"Yes, I'm OK. I'm not a guy. I'm a boy."
BANG!!!!
A little air under those feet, no hands on the ears this time.
I spend a few minutes talking to Tyler while Haydn flirts with the girls.
"Excuse me girl, do you like the Old Gym?"
Aspie Suave´...
"Yeah, I guess it's OK."
"I love the Old Gym. Yes I do. There are square lights in the Old Gym. I like the lights in the Old Gym. Yes I do."
"I can see that. I guess they are pretty nice lights."
BANG!!!!
A little less jumpy, no hands on the ears, head straight-ish. The guns are fading into the background. I learn that Tyler's race is going to be in about three hours, so Haydn and I are going to need to find something to do.
"Hey, Daddy-o. I think I need to go potty."
Well that's something to do...
"OK, let's go. Say goodbye to everybody."
He never knows how to end a conversation. He usually just flies away.
"Goodbye everybody. See you later Tyler. See you later track meet girls."
Unfortunately, in order to get to the bathroom, we have to cross the track near the finish line. Right next to where Mister Starter Gun has been methodically blasting Haydn's ears and disrupting our evening.
Haydn does not see him, so I try to hurry him toward the track crossing. Every other minute of every other day, Haydn moves at 100 miles per hour, buzzing around and dragging me along for the ride. Now that I need him to pick up the pace, he shuffles along slowly to the scorers table and starts a conversation with one of the meet officials.
"Hey. Excuse me. Do you like your black track meet notebook? I think I like those track meet lights."
BANG!!!!
We are too close.
The shot seems to rip right through Haydn's ears. The blue of his eyes flatten out and his hands lock up over his ears. I can see tears gathering at the corners of his eyes, the bottom lip slipping out.
I need to get him to a private place so he can calm down. I want him to be out of sight, so he does not get embarrassed. He has a terrible reaction when a room, or something in the room surprises him. He does not like to fail, and I think he gets embarrassed when he loses control. It's almost as strong a feeling as the sensory shock that usually causes the problem in the first place. He is a very resilient little guy and just puts his head down and plows into the situation at hand whenever possible, but unfortunately that aggressive attitude sets him up for a big old sensory backhand upside the head from time to time. It does not happen often, but when it does, he will go fetal on the floor with his hands over his ears. He withdraws into himself, and it is not easy to pull him back out.
I scoop him up and carry him across the track. He is terrified, his head ringing from the gun shot, he has his head buried in my shoulder. I can feel the tears wetting my shirt, and his grip is getting tighter around my neck. I see a staircase by the bathroom. It appears to be a little darker and a little quieter than the rest of the room, so I decide to duck into the shadows and see if we can pull this thing back together.
We sit on the stairs, Haydn on my lap, his head buried in my chest. I notice that he is soaked with sweat. The back of his neck, his lower back, his hair. The track meet has been so intense that it has actually taken a physical toll. He is starting to shake and I can feel the weight of every person, every sound, in the room pouring out with each of his breaths.
"Haydn. Is there anything I can do to make this better."
He doesn't say anything, but grabs my hands and places them on his back, one on the lower back, and one on his shoulder blades. He is very deliberate in their placement. I squeeze him a little tighter and I can feel the hitch in his breathing release a little.
"Let's try to calm ourselves a little. Let's breathe, and try to turn off the sad switch."
Haydn visualizes his moods (anger and frustration - the temper switch, sadness - the sad switch, etc.) as switches, and he tries to turn them on and off when he needs to.
"Would you like to try blowing up the balloon Haydn?"
"Yes. I think we should blow up the balloon Daddy-o."
Big breath in, blow it out. Do it again. And again. Blow up the balloon.
He starts to get himself under control. I can feel the tension in his body releasing.
He gets off of my lap looks right at me. Ten minutes and he already has that sparkle back in his eyes.
"I think I need to go potty." Back to the original task
"OK, let's do it, kiddo."
"The kiddo needs the bathroom Daddy-o."
"Of course he does."
We walk into the bathroom, make a quick dryer assessment (looks like paper towels), and he ducks into a stall to do his business. I close the door to give him privacy.
"Hey Daddy-o, that boy is making poopy!"
"Excuse me?"
"The boy next to me is making poopy."
"Haydn, I don't think he needs you to tell everyone. Move it along, we need to get out of here."
I peek in the door, and Haydn is doing some sort of bathroom stall yoga, taking a leak all over the side of the toilet while standing on one foot and peeking under the wall of the stall. Real good for the core and overall balance...
Fighting the laughter, I try to muster up something resembling an authoritative Daddy voice (with the middle name thrown in for dramatic effect):
"Haydn Michael, what are you doing in here?"
"It's OK, Daddy-o. You don't have to be mad."
I decide to cut him some slack. He just worked a real hard room, took a sensory beat-down, and still managed to get himself back on track. Pretty impressive for a five year old. I am very proud of my little guy. Can't let a little bathroom yoga derail a pretty significant achievement. In fact, I think a stop at Carvel for some ice cream may be in order.
He walks out of the stall and I twist his pants around for him. (he can't ever seem to get his pants back to the way they were pre-potty) I look up and see kids everywhere. There is a line of kids waiting to get into the stalls. Lines at each urinal, lines at the sinks. The room is reaching maximum capacity. We need to wash our hands and get out of this place.
We wash our hands at the sink and as we dry them, I feel so proud of Haydn that I feel that it is time to make a big-time Daddy speech and spell it out for him. In the most crowded bathroom in New Jersey. Brilliant.
"Haydn I am very proud of you. You did a great job at the track meet today. I know it was hard, but you were very brave and very tough today. You are getting very good at beating these hard rooms."
Then my amazing little boy... My Aspie Warrior... The light of my life... My inspiration to try to be the best Daddy and best person I can, looks up at me with sparkling blue eyes...
And turns off all the lights in the bathroom.
"Haydn!"
"It's OK Daddy-o. You don't have to be mad."
|
Same Kid... Different Look (Winter 2011)
A story about a pretty intense day last winter... Haydn and I are going out for a walk today.
The weather has finally started to warm up and it's time to get this
little mall-rat some fresh air. We leave the apartment with no real
plan, and Haydn picks an unusual destination for our walk. "Hey Daddy-o. I think I want to go check my old school."
"Gibbs is too far away to walk, kiddo. Let's go check out Berkeley."
"I think we need to go to my old pre-school. The white one."
"Really?" A horrific experience for him. I can't imagine why he'd want to go back...
"Yes, Daddy-o. I think we should go to see my old school. Then we can
check 'people's offices,' the Chinese Food fans, The liquor store fans."
A little stim sight-seeing tour thrown in for good measure...
"Tell you what. We'll walk around Berkeley, check out your old school,
and go down to Hardcastle Pond. No stimming on the store fans."
"Ok, Daddy-o. I will try not to stim." We walk through the
parking lot behind our apartment, and I can see Haydn’s school. The
latch-key program is in full effect, so there are kids everywhere.
Usually, when there are this many kids, Haydn and I will spend a few
minutes working out a plan before we venture into the fray. He is not
allowed to run from these types of environments. I'll talk to him a
little bit before he meets with the other kids, then pull myself out. I
don't try to run the show, but I try to get him ready as best as I can.
Today, however, there is no strategy meeting - Haydn just leads me onto
the field and tells me HIS plan.
"Hey Daddy-o. I want to go check my rooms."
"Sounds good, Haydn. Which one do you want to check first?"
"Let's go check the art room." We approach the school from the
left side, and walk towards his art room. The art room window is right
around the corner from the playground. A mere ten feet from the total
insanity of dozens of kids stuck at school for an extra few hours. Haydn
is so focused on the classrooms, he does not seem to mind the madness
at the moment. He leads me towards his art class window, shows me his
desk, the lights, the fans, etc, and we prepare to move on to the next
room. I follow my little tour guide to the next window and I hear a
shout from the field behind us:
"Haydn! Hi Haydn!"
Three little girls and two little boys stop their game of tag and run
over to see Haydn. Apparently these are some of his friends from the
general ed. class that he is being integrated into. The kids that he
talks about every day.
He really is making friends!
"Haydn! Haydn! Hi Haydn!"
Haydn does not love this. This is not part of his plan. We never
discussed talking with other kids. This is perfect. No preparation, no
scripts, nothing. Spontaneous conversation... real life...
It's not getting off to good start, however. The bum-rush greeting is
probably the worst way to approach a gent like Haydn, but these kids are
five. Everything they do is at full speed.
So I guess, technically, this IS good for him.
He ducks behind me for a second, and I decide to introduce myself and
buy him some time. The kids all say hi and tell me their names. When
they finish, he peeks his head from behind me and says:
"Hi Brianna. Happy St. Patrick's Day. Hi everybody."
Then he ducks behind me again. These kids all know Haydn, and are
extremely patient. They take a few seconds to say goodbye, and run back
out to the field, except for Brianna.
She stays behind and just stares at him with a huge smile on her face.
Haydn peeks from behind his Daddy-o shield and smiles again.
"Haydn. I never saw you here after school before." Oh boy, here it comes...
"I am going to go check my old school now." Off topic, but still an answer... we'll take it
"OK. I'll see you later." And she runs off.
I am very proud of my little guy. He didn't flap, cover his ears, run
for the hills - nothing that LOOKED strange. Sadly, this is a major
priority right now, kids at his age are defined by their behavior, so we
have to be very aware of how he is perceived by his peers.
"Daddy-o, can we go check the gym and the front of the building now?"
"Absolutely, Haydn. Anything you want."
We walk around the front of the building, stopping to peer in windows,
try to open a few locked doors, and talk a little about what just
happened.
"Haydn. Were you happy to see Brianna and your friends?"
"Yes, I was very happy to see them." That's it. That's all I asked for, that's all he gives me
I decide not to push it. It was a fairly positive encounter, and he is
still feeling good. His whole afternoon was seriously disrupted, but he
kept it together.
We window check our way around to the other side of the building and I
realize that we are headed towards the kids again. He does not seem to
care, so I am not going to mention it.
Haydn runs out in front of me, right through a fifth grade basketball
game, and onto the field. I catch up to him and I hear a ruckus coming
from the right, and out of the corner of my eye, I can see them.
Rapidly approaching, like a horde of angry Monguls, the girls are coming over to see Haydn again.
"Haydn! Haydn! Hi Haydn! Don't leave yet!"
They rush over and Haydn freezes. Then he backs up about ten feet, and
starts pacing in small circles, talking to himself, looking up, looking
down, anywhere but at the girls. His little fists are balled up at his
side, and he looks like is going to explode out of his skin. He is
bouncing up and down a little and all the color has left his face. Haydn
is overwhelmed, over-stimmed, over-everything-ed, and it looks like his
whole world is going to collapse around him.
He looks scared to death.
I have never seen him like this before.
For the first time in his young life...
My son looks autistic to me.
THIS, is Asperger Syndrome. It's not always apparent, but it's always
there, lurking under the surface, waiting for a chance to stir up some
trouble. It is a combination of positives and negatives, strengths and
weaknesses, gifts and challenges. Highs and lows. It's so easy to forget
about it sometimes, but your little professor can turn into a little
boy lost in a matter of seconds. Sometimes you don't even notice it's
there, other times so obvious it tears your heart in two.
But, Asperger Syndrome is still Asperger Syndrome.
Asperger Syndrome is not Haydn. And Haydn is not Asperger
Syndrome. It does not define him or control him. But it never stops
trying. Asperger Syndrome in Haydn's World is a stubborn and persistent
force, always looking for a way to cause problems. Haydn is constantly
at war with himself. His senses often work against him, his brilliant
little mind often trying to twist him into knots, and his body doesn't
always respond the way he wants it to. But Haydn never stops fighting.
He doesn't win every battle, but he is definitely winning the war.
Meanwhile...
Haydn has left the building.
He simply is not with us at the moment. He is bouncing around inside his
own head, and he can't get himself slowed down. I just keep looking at
him. Haydn hates it when I jump into to help him too quickly. If I jump
in too soon, he will push me away. Haydn comes to me when he is ready,
and I have to be patient. But I have never seen this before. This is the
most extreme behavior I have ever seen. He looks like a stranger to me.
I just want to run over, scoop him up, and get him the hell out of here.
Unfortunately, not an option...
He turns away from me and the kids. I slide around to face him, still
giving him some space, and I see what he is trying to do. His face has
gone white. His hands are balled into fists, locked in front of his
waist, and he is trying to do his "balloon breath." He is trying to calm
himself down. All by himself. He is fighting a war behind his blue
eyes, but I can't tell who is winning yet. The kids all
step back and give him space. They are waiting for him to calm down.
They are not scared or freaked out by his behavior at all. One by one,
they walk over and pat him on the back, look him in the eye, tell him
they will see him tomorrow, and go back to play.
Except Brianna.
Brianna stays behind again, and stands there smiling at Haydn.
He is not calm yet, but he has wrangled his gaze enough to get it
pointed at me. I give him a thumbs up, and point to Brianna. He does not
smile, does not say anything, just keeps his distance. Hands locked in
front, he just stares right through me.
I decide to talk to Brianna.
"Hi Brianna. Did you have a nice St. Patrick's Day?"
"Yes. Why does it take so long for Haydn to say hi to me?" Are we really going to do this?
"Haydn has a hard time saying what he is thinking sometimes?"
"Why?"
"That's just the way he is. He just needs to practice talking to his friends, so he can get better at it."
"Oh. Haydn's my friend."
"Well, I know he really likes you. He talks about you all the time."
"He does?"
"Every day."
With a big smile, she walks over to Haydn and puts her hand on his shoulder. He flinches, but doesn't move to get away.
"I liked seeing you after school today. I'll see you tomorrow Haydn."
She runs off, and Haydn is left standing alone. He watches her leave, and when she is far enough out of earshot he quietly says,
"Good-bye Brianna. See you later."
I walk over and put my hand on his shoulder.
"How are you doing Haydn?"
"I'm OK, Daddy-o. I'm so happy. I was happy to see my friends today. Yes I was."
Funny... you look like you just went the distance with Apollo Creed "That's great. What would you like to do now? We can go home if you're a little tired."
"Brianna has two green pig-tails. Yes she does. Leanne was happy to see me too. I was so happy to see my friends today."
Definitely feeling a little better...
"That's great kiddo."
"I think it's time to go check my old white school."
"Really? You want to keep walking?"
"I was happy to see my friends today. Yes I was. I was happy to see my friends today. Let's go Daddy-o."
And a little better still...
"Haydn. Guess what?"
"You're very proud of me!"
"Yes I am. VERY Proud. You a very tough little guy."
"I'm not a guy. I'm a boy. Hey Daddy-o? Can we get some ice cream after we check my old school?"
"Of course we can, and..."
"And check people's offices, the Chinese Food fans, and the liquor store fans."
Well folks, it looks like he's over it.
Haydn is still Haydn, and Asperger Syndrome is still Asperger Syndrome. And for another day, the good guy has won.
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