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In Their Own Words – Life is Weird

October 15, 2010 27 comments

This “In Their Own Words” is by Mallory Johnston, who has an older brother with autism. She graduated from Tennessee Technological University in May 2010 with a degree in mechanical engineering and two minors, biology and chemistry. Mallory now works full-time with NASA-Marshall Space Flight Center in Huntsville, AL and has applied for medical school for the 2011 year.

I entered college with about 8 months of very limited driving experience.  I was 18 when I earned my license. My mother wouldn’t let me drive, and I didn’t push the subject. We had bigger things going on when I turned 15. Not long after moving to Bethpage, Tennessee, my brother got sick.  My brother was born about three months premature. Some people hear this and think “Oh, that is terrible. I’m sorry to hear that.” I’m not. My brother was born three months premature with hydrocephalus. Basically spinal fluid doesn’t drain properly, and excess spinal fluid from the brain isn’t removed.  Typically if a baby is born with hydrocephalus after a nine month gestation period, the baby is either a stillborn or in a vegetative state.  Severe mental disabilities begin to develop around six months of gestation.  Once again, Clay was three months premature. Who’s to say what is good and what is bad?

Twice a year we would make the three and a half hour drive to LeBonheur Children’s Hospital in Memphis, Tennessee. CT scans were performed on “Mr. Joseph Johnston, please follow me” a couple of times a year. Because a neurological condition wasn’t enough, he also has cerebral palsy on his right side, and when he was in the first grade, he had to have his Achilles tendon severed. He spent 3 years in casts and a leg brace.  I remember doctor after doctor asking “what type of special school does Clay attend?” “None. He goes to public school,” my mother would be quick to respond. My parents never once let Clay think he wasn’t capable of anything. No matter how much time he needed, no matter how much attention he needed, neither one ever doubted him of any ability. He didn’t have disabilities; he had “different abilities”.  And when he graduated from high school with an Honors diploma, my mother cried.   My brother cried when he was told he was going to have to have neurosurgery. With a strip of dark brown hair shaved off his head and a tube coming out of his skull, we all could have cried but couldn’t.

We all thought we were in the clear. We were told that there was a “good chance” Clay would need surgery after a major growth spurt, to replace his shunt and/or the tubing that drained the excess fluid to the abdominal cavity. When he was sixteen, he threw up on his desk in Mr. Vincent’s algebra class. What should have been a routine procedure turned into three years of Percocet and Lortab; waiting room chairs turned into single person couches. On my fifteenth birthday, my brother had brain surgery.  On his seventeenth birthday, he had brain surgery.  On Easter, near Christmas, in the middle of the summer—my brother had brain surgery. If he wasn’t in the hospital, most of the time he spent on the couch with a cold cloth on his head covering his eyes. I’d get off the bus, come through the door, and when I saw that all the lights were off, I knew what that meant: Clay had another headache.  The I-can-only-imagine-to-be-the-worst-headache-ever pain would build and build. Then he would vomit until he was dry heaving, sometimes for hours.  One There were so many surgeries and nothing seemed to work. What a quality of life- taking medicine that makes you sleep 20 hours of the day, and when you’re awake for the other four you’re either too drowsy or in too much pain to do anything.  A simple, routine procedure for a condition that affects one in every 500 live births lasted three years. We all discovered that some things were more important than splitting up Christmas ornaments or getting a learner’s permit. My mother never left the hospital when Clay was admitted. My father and step-father alternated who picked me up from school every day, followed by an hour drive to Nashville to visit at the hospital. My two dads—what can I say? After her husband, my father may be my mother’s best friend.  Clay hasn’t had to have surgery since late 2002, but we all hold our breath when he says his head hurts.

After graduating from high school in 2003, Clay had been taking some classes at the local community college. My brother couldn’t drive or tie his shoes or a number of things.  He, however, was very bright with dates and facts.  My mother was constantly at the school reminding teachers and administrators of the Americans with Disabilities Act.  Due to Clay’s cerebral palsy, his motor skills were hindered. This greatly affected his hand writing and his typing speed. Even after being told before school started about this, some teachers still found it to be their right to make public comments to the class about how they “couldn’t read Clay’s writing” and “can’t you just” write better.  My brother’s accommodations were time and a half on tests.  That’s all. He was legally blind without glasses, had hydrocephalus, cerebral palsy, and spent time in a leg brace.  All he wanted was time and a half on tests so he could type out the answers on a computer to make the teacher’s job easier.  About two weeks before finals week for the fall 2005 term, the college sent a letter saying his accommodations were being taken away. How convenient that it fell right before finals week.   During one of the many visits, the President of the school actually had the nerve to say to my mother “If Momma wants to go to college, why don’t Momma sign up for classes.”  She signed up for something.

At the beginning of the spring 2006 semester, my mother set up for Clay to have an extensive neuropsychological examination that would encompass two days and about 24 hours. She was going to have documentation that Clay needed accommodations, and she was going to get every single one she could for him.  Her plan was to get vengeance.  Clay was reluctant and unwilling. He eventually went inside. After about fifteen minutes the lady came out and said to my mother “I am very surprised at how well he has done considering how autistic your son is.” She said it positively.  “Wait. What? My son is what?”  I have known all my life that Clay was “different,” and more than likely Clay would need someone to live with him or at least very near him for his entire life.  But there was always hope he would “catch up”.  That single word, that diagnosis, caused abstract ideas to plummet and become real and concrete.  How could nationally recognized neurologist miss this? How could doctor after doctor never notice how he avoids eye contact, slaps his left hand into his right hand repeatedly, and just parrots what you want him to say when asked a question?  Why couldn’t his family that lived with him not recognize sooner that his destructive behavior wasn’t him “lacking discipline”? His actions were less his choices and more his reactions from the world as he perceived it.  How were we supposed to know that he didn’t see the world like the rest of us?

The diagnosis of Autism has helped all of us especially my mother.  For many years I believe she wondered “What am I doing wrong? Have I failed as a mother?”  Clay’s behavior would become more than disruptive to the point of violent over things such as a change of dinner plans. These “episodes” would almost always be followed with him bursting into tears. It is difficult to say if finding out sooner about his condition would have been better for all of us or not.  Because my parents refused to let Clay fall into the “special needs” category, he excelled further than average concerning academics.  My mother dived head first into books about autistic adults, books written by adults with Asperger’s, and books written by parents of autistic children. She read articles and watched videos.  Many of these she passed on to me.  We soon discovered that we couldn’t change his behavior, but we could only modify ours.  And on my brother’s 22nd birthday, my mother quit smoking.  “I have to live forever for him…”  We laughed because sometimes that’s all we really can do.

I remember being protective of my older brother when we were in elementary school.  If anyone picked on him, I took care of them. I have always been preparing to take care of my older brother. To be a starving artist who travels just snapping photos and writing journal entries hoping to be published sounds so incredibly desirable to me. To make mistakes, to be selfish, to run without a direction telling myself “I’ll figure it out later” are things I have tried my best to avoid.  I chose engineering because it is a stable field. It is a challenge, but it isn’t a risk. Everyone will have their responsibilities; some just embrace their responsibilities sooner than others.

When I was offered an engineering co-op position with NASA Marshall Space Flight Center in the spring of 2007, I never thought in a million years I would actually work for NASA. Who does that?! The co-op experience has been amazing.  I have seen two space shuttle main engine (SSME) tests.  I have watched one of the last night-time shuttle launches ever.  I have talked with astronauts over appetizers and drinks. I get to tell people “I work for NASA”.  Sitting on my book case is an autographed picture signed “Dream big” by STS-118 Pilot Charles O. Hobaugh.

When I tell people what I want to do, they say I’m crazy.  “Well, I’m hoping to go to medical school for Fall 2011, become an astronaut, write an award winning book, and then work on becoming President…” But I’d rather be the “crazy one” aiming for the moon than the person who has grown satisfied. I only partially understand the hard work and sacrifice a woman with her GED  performed to raise a gifted daughter and challenged son. I have witnessed my brother’s struggle with beginner’s algebra and putting on shoes with laces or pants that have a zipper. I am the age my aunt was when we believe she contracted HIV/AIDS from her husband.  I would rather be the “crazy one” to everyone else, so that I can be someone who didn’t waste her talents and the sacrifices of others.

Some could say I am pursuing medical school “a little late in the game” and that I am not approaching this in an orthodox manner.  I didn’t enter college as a pre-health major knowing “I want to be a doctor”. I didn’t start moving down a list someone said was the standard way of doing things to get into medical school. I am attempting to make my path because of a passion I have always felt.  My diploma says I graduated “cum laude” (with honors),  something I didn’t think was possible even a year ago.  I’m still not sure if I have expressed how much I want this. From the many things I have observed in my life and the many things I have accomplished, there is no doubt in my mind given the chance and the preparation that I can become an amazing medical student.

I chose engineering because it is a stable field. It isn’t a risk. Applying to medical school, that’s a risk. My life has been anything but standard. It has been a rollercoaster. It has been a movie. It has been drizzled with sweet moments and sprinkled with sour flashes.  Just as Clay continues to work towards his bachelor’s degree, I am working towards being more myself. Whether I continue to work for NASA or become a doctor or an astronaut or an award winning writer, my life will continue to be my life— peculiar and complete.

“Life is weird.”

Life is what you make it.  Dream big.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Flying

October 12, 2010 3 comments

This “In Their Own Words” post is by Jane Parker. She is the wife of a State Department Foreign Service Officer currently living in the DC metro area.  Check out Jane’s blog, Spectrummy Mummy, where she writes about Pudding (3, Asperger’s) and Cubby (18 months, not yet diagnosed).

Two kids, one mummy and a swimming pool. Pudding has always loved the water, but has no fear of it. Cubby is brave enough in a kiddie pool where he can stand up, but terrified in the big pool. Usually he won’t allow any part of his head to touch the water, and makes a sorry sobbing sound if I so much as transfer him to my other hip.

So going to the pool without Spectrummy Daddy in tow is a bold move. This is DC in August. It has been a scorcher, and the humidity factor can be unbearable. When we do brave the playground, the mosquitoes ravish my exotic English suck-me skin, the resulting wounds last for weeks.  Yuck.  Stuck indoors all the time, Pudding can’t help but find trouble.  At times I feel like I say nothing but “no” to her.  I’m weighed down from being so negative.  We’d been inside too long, it was time.

We’d had some problems before in getting her to wear her swim vest, but if she put it on back to front, she was fine. It kind of looked like I’d put my special needs child in a straight jacket, but she was happy, safe, and unable to reach the zipper to take it off.  I’m getting used to odd glances coming our way.  Luckily people tend to keep their small thoughts to themselves, which is just as it should be.

Cubby clung on to me the whole time, but there was no crying or screaming. At a few points, when he was splashing around and soaking his mama (which he says properly now!) quite thoroughly, he squealed with delight. Pudding just looked calm and serene, feeling all the lovely sensation of the water.  The pair of them, who have stretched my heart in ways I could never have imagined, were at peace getting what they needed.  I wanted to cherish the time.  I didn’t feel like the mother taking care of her high-needs children.  I was the special guest at this party.  I felt honoured to be in attendance.

After a while, she took to climbing out and jumping back in again, over and over. There didn’t seem to be much purpose to it, but she had the most beatific smile on her face, it must just feel right to her. So often I’ve taken for granted that my senses and my body work just as they should, I’m so fortunate.  I wish she could have that feeling more often.  I wish everybody could.  I’m just glad she gets to have her moments of it, and I get to share them with her.

One time as she took off, she looked at me and gleefully said, “I’m flying!” My heart soars along with her.  For that one sweltering afternoon, my love, we both were.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Can You Appreciate My Son’s Successes?

October 8, 2010 55 comments

This “In Their Own Words,” post is by Shannon Des Roches Rosa.  A version of this essay originally appeared on Shannon’s personal site, www.squidalicious.com, and on www.blogher.com.

Last week, my son Leo and I had the loveliest day together. It was a pleasant day, full of the kind of errand-running and necessary outings that might cause a neurotypical kid to grumble. But Leo, who has intense autism, was a great sport and good company as we trotted all over town. Still, I suspect we may have looked odd to folks unaware of Leo’s challenges, to observers who couldn’t know that it has taken seven years of hard work by Leo, his family, and his team of dedicated professionals and educators to help our boy behave quirkily when he’s out in public — instead of totally out of control. Instead of not going out at all. So, theoretical observer, let me interpret for you, in case you are curious about kids like Leo when you see them out and about, and wonder what is going on with that funky kid and his or her parents. Let me explain to you just how successful our boy’s day was. We started our day accompanying Leo’s five-year-old sister to her soccer team’s picture day. I held his hand the entire time, which probably looked odd as he is obviously not a small child himself. Why do I hold his hand? Because he’s less likely to bolt. Because noisy, swarming little kids make him skittish, and holding my hand helps keep him calm. While we were waiting for his sister to stop making faces at the camera, I introduced Leo to several parents. After I told Leo each person’s name, he replied on his own, “Hi, ‘Name.’” It was great to see smiles from parents who knew of Leo but had never talked to him before, and didn’t realize what a friendly, polite kid he is. Successes:

  • Leo didn’t bolt.
  • Leo waited with me during a non-preferred activity for 30 minutes, without getting impatient.
  • Leo didn’t treat the small kids like the bowling pins to his bowling ball. No one was scared of him, much less hurt by him.
  • Leo spontaneously inserted correct names into a social greeting, with eye contact, and with an appropriate response to a social question.

After pictures, the three of us visited a local cafe for a snack for the kids and coffee for me. Leo spied bagels in the display case and asked for them, so I told him and his sister to sit down at a table and wait while I ordered their food. But the barrista mixed up our order, which caused confusion and delay. I started to panic — Leo kept asking, “Want a bagel, please?,” which might have seemed weird to the other patrons. But for Leo, re-asking is a form of self-soothing and processing — he really wasn’t going to get a bagel immediately, that sucked, and he needed to deal. And he did! Eventually our food appeared, I sat down, and we all enjoyed our treats. Successes:

  • Leo waited calmly for a highly-preferred food item, and did not tantrum.
  • Leo accepted that another highly-preferred food item would not be coming his way, even though he could see it right there in that display case.

Leo and I became a dynamic duo later that afternoon when the rest of our family scooted to a Daddy-Daughter hootenanny. I decided to treat him to his favorite Indian restaurant, where he did a giggly happy dance of anticipatory “naan bread” joy. (His audible glee lasted only a few seconds and wasn’t too loud; if he had been disruptive to other patrons, we would have left.) Leo stayed with me as I pillaged the buffet, asking me for naan every thirty seconds. I reassured him each time that he could have his naan — but not until we sat down. He remained calm. Once we sat down, I tore off pieces of the naan bread and handed them to him instead of letting him have his own plate. My behavior probably appeared odd and controlling — a helicopter mom hand-feeding her chubby son — yep, that family’s got some food issues. But there was actually a lot of work, progress, and practicing going on, for those who knew what to to look for. Because every time Leo ate a piece of naan bread, he saw me dip it in my saag (spiced spinach puree) first. Our boy, who usually eats only six foods, but has been working hard on tolerating other tastes and textures, watched me put a non-preferred food on his beloved naan. And he still ate every single piece. Happily!

He then asked for mango ice cream. Since dessert is included in the buffet, I got him a bowl of the orange stuff. He tidily ate the entire thing himself, with a spoon — a challenge for a boy with fine motor issues. Successes:

  • Leo did not try to snatch naan bread from the buffet.
  • Our dietarily self-limited boy is now eating a spicy Indian food.
  • Leo used a utensil to feed himself a whole food portion.

Next I took Leo to get his beautiful but too-shaggy moptop trimmed. He let the stylist cut his hair, without any significant behaviors. Initially, he squawked and fidgeted — which I’m sure drew quizzical glances from other patrons — but once I brought out his iPod touch and held it so he could watch a favorite video, he settled down. The stylist could then chop off his luxuriant glossy curls, and buzz a clean line around his ears and neck. Successes:

  • Leo did not scream and cry and try to escape from the stylist’s chair.
  • Leo did not need to sit on one of the playground-style kiddie chairs. He sat in a regular chair.
  • Leo did not require a lollipop or other food item to comply.
  • Leo did not jerk his head around so violently that his hairline looked badger-chewed.
  • Leo was able to focus on a video during the session, and sit extra-calmly.

Leo, with his family’s and his team’s support, is still working on a lot of challenges. But I hope my description of these four episodes’ successes helps people appreciate kids like Leo under similar circumstances. I hope that instead of thinking, “Why is that kid behaving so strangely,” people will start to ask themselves, “I wonder just how hard that kid is working?” Because I bet you anything, those quirky kids — they’ve worked their tails off, just to be able to leave the house and appear in public. In Leo’s case, the goal isn’t even to blend in, but rather to be able to grocery shop, eat in a restaurant, go to the park, or get a hair cut without disturbing anyone else, or causing a major incident. We got through our entire day without having to abort a single errand — quite an accomplishment for such an easily overwhelmed boy. I hope, after reading this, you’re as proud of Leo as I am.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Not Your Average Joy Ride

October 1, 2010 22 comments

This “In Their Own Words,” is written by Jo Ashline. This post is about her younger son’s relationship with his older brother, who has severe autism.

You
will always
be
in the driver’s seat
the steering wheel steady in your hands
chosen without your consent
but you
honor your duties
steering with integrity
and
purpose

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.

He
will
always
be
your passenger
counting on your guidance
as you commandeer
his safe arrival
something you promise
just out of
the
purity of your
heart

You are
going somewhere
and
it only matters
that you go
together
the wind
blowing through
your
hair
the sun
shining
behind you
the misunderstood world
at your fingertips

Your heart
outgrew your
body
the day you took his hand in yours
and helped him buckle
his seatbelt

You head towards
a place
where love
transcends
speech
and
everyday expectations
the journey
possible
only because
you
wouldn’t go
anywhere
without
him

Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.

A marvelous
pair
of
everyday heroes
kicking up dirt
as
they drive
towards
something
incredible

It
is not
your average
joyride

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Acceptance Park

September 28, 2010 11 comments

This “In Their Own Words,” is written by Erica from Laughing Through Tears,  who started blogging about the “funnier” side of autism as a way to keep her sense of humor and sanity.

Last month on a 100-degree Sunday, my husband and I took the kids to a “water park.” That is to say, a park that had a water feature. This is what most people in our area do when the temperature moves north of 90F, and it can be a real challenge to find one that’s not overly crowded.

I always feel a certain degree of anxiety when I think about taking my kids to these types of parks, because of all the typical families that will be around to witness their peculiar behaviors (I’m allergic to public scrutiny). So, I thought and thought, and then remembered an obscure little park tucked in a neighborhood development behind a newer shopping plaza.

The problem with being a newer area is that all of the trees were still just saplings, giving off only postage stamp-sized patches of shade. After just 10 minutes, my husband turns a spectacular shade of sweaty vermilion and I shoo him off to a shaded pavilion while I stay to supervise the boys. Here we go, I think to myself.

A few moments in, and Cannon kneels down over the drain in the center of the fountains. “CANNON!” I call out sharply, knowing exactly what he is going to do.

A nearby couple looks over, surprised by my sharp tone.  “Nothing comes out of there. It won’t hurt him,” the dad says.

“Right, but he is going to lick it,” I say.

A slight pause while that sinks in, then the mom laughs and says, “Let him!”

While I’m wondering if I heard that right, Carson slips behind me to steal another woman’s soda. I rush over, gushing apologies; bracing myself for a dirty look and possibly sarcastic comment. “It’s fiiiine,” the woman drawls, as she proceeds to take a sip from the very same can a strange child just slurped on.  She then reaches into her pack and offers a juice pouch to Carson. “This is for my daughter, but you can have it instead.”

Completely stunned, I look around to get a better sense of who all of these people are. These can’t be parents of neuro-typical children– they’re too relaxed, too accepting, so utterly non-judgmental. Clearly, I’ve stumbled into a den of some of my own kind and not realized it. But no, these children are all having conversations with one another, taking turns activating the button that turns on the water spray, keeping their clothes on, and licking nothing or no one.

I watch in fascination as one little girl fills an enormous McDonald’s cup with reclaimed water from the fountains and then proceeds to dreamily spoon it into her mouth with a beach shovel. No one screams at her to stop.

The spray shuts off, and a boy of about eight years of age calls out to someone, anyone, to PUSH THE BUTTON. No one rushes over to enthusiastically reward him for making his request in a full sentence. Well, I do, because I’m just wired that way now, but his parents don’t. In fact, I think they’re ignoring him altogether. Until now I’ve only heard of this phenomenon, where a child talks so much that the parents actually tune him or her out.

“I’m BACK IN BUSINESS!” he shouts when I turn the water on for him, and I find myself automatically wishing that I had some goldfish crackers or m&ms to give him as language reinforcement.

When I can stand the heat no longer, I round up my little gremlins to leave. We depart to smiles and casual waves from a few of the parents. The park shimmers like a desert mirage when I cast one last, backwards glance at it. Did I dream this place– “Acceptance Park”– where a kid can truly be a kid, and no one gives a rip?

My husband joins us on our walk back to the car. “How was it?”

“Perfect, actually,” I tell him.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Considering the Lilies

September 26, 2010 4 comments

This “In Their Own Words,” is written by Patty Dobbs Gross.

Danny and I were riding on the subway last week, glad to have snagged seats next to each other, happy to be together on the way to enjoy both summer in the city as well as a ballet at the Met; we both share an appetite for the Big Apple as well as for the visual delicacy of dance… 

 The man coming toward us was very tall, with a heft to his body and a slice of rolling skin uncomfortably visible between shirt hem and ragged sweatpants.  I was also inexplicably encased in sweatpants that had seen better days on this sweltering July day, and this was what I was thinking when the man suddenly looked up, raised his voice and addressed the entire subway car in one fell swoop of a sentence: “Attention…may I please have your attention?” 

 He had clearly said this before, and all eyes swung obediently to his commanding presence. “I am homeless and in need of change, even small change, to attend to my needs.” This is all I can remember him saying verbatim, for the mention of his needs dropped a curtain in my mind; he seemed much too tall, confident and well fed to be truly needy; at least to be significantly needier than my own family, quite house poor and college drained in the suburbs…

Out of the corner of my eye I saw Danny reach into his pocket for change; without a moment’s thought I gently touched his hand to communicate for it to still. Danny has autism and despite this fact (or because of it) he now attends USC’s School of Cinematic Arts, earning an MFA in film editing. His only adjustment to life at USC was his habit of giving cash to the strings of panhandlers that ring its iron gates…he called me one night and sheepishly confessed to doling out nearly $80 in cash to a woman who was homeless. After she took the money she claimed to have an inheritance she could share with him if he would just give her the $100 it would take to clear the court costs. Danny didn’t care about the inheritance, but he worried for her because she couldn’t reach this money without this initial outlay of cash; he wondered to me, in the voice of someone hurt by the level of misunderstanding between us, shouldn’t he give this relatively small amount of cash to her so that she could access this money and get off the streets? Doesn’t that make logical sense? 

 This was the moment I realized that although Danny never abused drugs or alcohol throughout his teenage years, he clearly still needed to learn how to just say no.    

The man was moving toward us as he strode confidently down the center of the subway aisle, holding the overhead silver rings to steady himself with a steady rhythm as the car rollicked back and forth, but he stopped his journey when he noticed my hand touching Danny’s.  He met my eyes with a snap.

“Are you his mother?” the man asked me, point blank and direct.

“Well, maybe that’s true….” I said, laughing a bit as if he had told me a silly joke.  All eyes in the subway car were now on me while I struggled to hold his eye contact, my heart rapidly picking up pace. “Or maybe not.”  It wasn’t that I wanted to be provocative or to attract attention, but that I didn’t want him to know anything about me whatsoever, and being Danny’s mother is at the white hot core of my being.

The man stopped his journey forward then, a move that struck me as mildly aggressive as he loomed over my sitting body. At my age my body is apparently sinking slowly into itself anyway, but he made me want to fold myself up in a hurry, but I happen to be Irish (and this explains a lot.)  So instead of fading away I held his gaze for another moment while I told him: “That’s mine to know.” 

He held my gaze pointedly for another moment, but then shook his head and broke eye contact (first! ;-) to resume panhandling; soon only his thrusting cup was visible, although his words rang out clearly as he altered his spiel to say, “Well, I wouldn’t let my mother stop me from doing what I wanted, and I wouldn’t let my aunt or my neighbor or anybody stop me either…I’m my own man…”

I tasted the bitterness of my sarcastic comment before I swallowed it, along with my considerable fear, to simply look down and pretend to study my shoes (they were black Velcro sneakers, cheap but sturdy, and quite handy if you need to dash off in a hurry.)  I was old enough to know that you never poke the bear if you can possibly help it, and I was already figuring out how I’d shape this experience into a lesson for Danny if we survived to make our train ride home to Connecticut. It would definitely end with the moral of the story being why he should not give money to panhandlers.

 When we left the subway car two stops later, on the grimy stairs that lifted us to the light of day, I whispered to Danny, “You didn’t take that stuff he said about manhood personally, did you?” 

“What stuff about manhood?” he asked me, genuinely confused.

I remembered then what I sometimes forget, that despite his success in life Danny still doesn’t learn much from his auditory pathways; in fact, he hadn’t even processed this man’s taunting words once he was out of his personal line of sight. The visual information of the scene he later relayed to me was letter perfect, and he could describe the man’s outfit much better than I in the short amount of time he had attended to him. Danny is not cured of the sensory integration difference he was born with despite his successful life, nor has his gift/curse of not attending to social subtleties vanished; he has only learned to compensate for his inherent and supposed weaknesses and capitalize on his considerable strengths the way he had learned to do before he even crafted his first original sentence.

And he might have continued to attend to what the man was saying if he had kept his voice loud and commanding, but Danny didn’t end up processing any of his later words that were spoken in a sweet and saccharine tone, despite their mission to wound Danny’s ego in order to shame him into giving him money; the honey coated but cutting words had instead gone blessedly over Danny’s head. I smiled as I thought of this man being hoisted by his own petard rather than what might have happened if he were clumsily called out by me, and I silently vowed once again to remain quiet when my ego struggles to speak, as so many previous life lessons have also attempted to teach me.

I have been a slow study…

 I raced up the stairs and joined the frenzied and sizzling pace of New York City in the summer, focusing on my gratitude for the breeze and my son beside me as we raced together toward the Met… just minutes later we were watching a ballet that it took a month of Sunday night hot dogs to afford to witness, and I swear I didn’t even notice the looks I must have received by virtue of my scruffy sweatpants and Velcro shoes before the lights went down; Danny and dance were the only things on my mind for the next few blessed hours, as I considered the beauty of all the lilies that graced our field.

In Their Own Words – What is Autism?

September 25, 2010 29 comments

This “In Their Own Words,” is written by Megan Winkler-Schmitt, who was inspired to write after her best friend’s son was diagnosed with autism.

I was thinking today, as I dried my hair, about what this mysterious thing called autism really is. I started making of list of what it is, based on what I’ve seen only, and I ran into the other room to write it down. I’d like to share it with you.

Please note that this is what autism looks like to me. These are the experiences I’ve had with it, and it differs from your own. I do not have a child with autism, but a little one very special to me and very dear to my heart struggles with it. I have learned so much from this little angel who is undeniably special and infinitely precious, and I see autism as something very real now. Let’s just say that for me, myths have been thrown out the window, and when you know someone with autism, you realize that what you thought you knew isn’t correct at all.

I don’t know why this jumped into my head. I wasn’t reading anything on it online. I wasn’t talking about it. I didn’t see a news program on it. But, sometimes, inspiration hits and you just have to listen. So, here are my thoughts. Please, please, share your thoughts with me, too.

 (And yes, I realize that it came out in very loose poetic form; it’s just how it works sometimes.)

 Autism is joy in little things.
It is pain and heartache.
It is the pleasure of bubbles;
the consistency of golden toast.
It is running through sprinklers,
because it just feels so good.
It is frustrated little grunts,
communication in screams,
a mommy who just wants to hear,
“I love you,” but even “Mommy” would be nice.

Banging your head against the wall,
it is the sleep of a sleepless night.
It is pleading and begging,
bargaining and weeping.
It is a mother and father clinging to one another,
and faith.

It is the crunch of a leaf,
it is the wind in your hair.
It is the simple joy of repetition,
the comfort of a pattern,
the security of routine.

It is unexpected moments,
of open-mouthed kisses:
those little things others take for granted.

It is loving a fluffy dog with your cheek,
and crossing your eyes,
just because the world looks curiously different that way.
It is inventing your own language
that only the fairies and Mommy speak.

It is struggle; it is strife.
It is imperfection,
but, then again,
so is everything,
in life.

It is tears and fears,
but it is simplicity and innocence.
It is not taking for granted,
it is cherishing, hoping,
running up a down escalator.

And if life is perfect,
just the way it is:
faults and imperfections,
second-guesses and small joys,
then what is autism but life,
lived in its own way?

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – An Aspie’s Dream

September 18, 2010 6 comments

This “In Their Own Words,” is written by Aaron Likens from St. Louis, Mo. Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome.” To find out more, check out his blog here.

I want everyone to know that for the most part, I am happy. It is my dream that people learn this. I may have some challenges, but I am not defective. I don’t deserve or need your pity and am happy being me.

There are times when the world tries to get me to fit in, and sometimes I try, but there are other times when a social situation may be too much for me. I have had situations in the past where I have been called weird or odd for trying not to fit in. It is my dream that the world begins to not only know about us on the autism spectrum, but begins to understand us.

We have a lot to learn from each other. I look at, sometimes completely perplexed, how two random people can have a conversation. I know others look at me, completely perplexed, when I get excited about a random fact that I recall about auto racing, or when I have the ability to learn some new obscure facts. It is my dream that the world comes to realize that socializing can be difficult the same way it would be for you to recall minute details from the 1992 Indianapolis 500. We are the same, but different.

It is my dream that I never have to apologize to again. This can only come from understanding. Being on the spectrum isn’t something to look down upon! Yes, it has its challenges, but it has its blessings. Each person is unique. Let’s cherish the uniqueness and not look down upon it. In my mind an apology like this is reserved for something really horrible, and I don’t see it that way. I hope, and dream that, eventually, all will see this.

I dream what everyone else dreams about. I want to have a full, productive life. I want a family, a career, and the ability to live my life to the fullest. Some people seem to think that an autism label is the end and that to dream such things is a waste of time. No dream and no person is a waste of time. Yes, we may need to work harder at some things, but if we’re not given a chance then how can we succeed? There is so much potential in a mind on the spectrum, but if not given the chance how can one dream of the things that I dream about?

Finally, my biggest dream is a day where the word autism doesn’t draw a repulsive reaction for those who aren’t affected by it. Autism has to be one of the most misunderstood conditions, but understanding is coming. I haven’t had to debate someone on what autism is for quite some time. When I say “asperger” people don’t think of a food item or Olympic venue (sad, but true!). Everything in this world started as a dream, and my dream was already started by countless of people before me and I hope I can do my part in fulfilling it. I know I am not alone in my dream. All of us can do some part in educating some one; whether it is a school, politician, or a random person in a grocery store. I feel the world is listening and is open to learning about us. In all reality there isn’t that much that separates us; we’re all people, we all have dreams, and for us on the spectrum we just have different traits. We have feelings, we can be scared, and most of all we just want to be understood. This is my dream.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Georgia’s Story

September 16, 2010 10 comments

This “In Their Own Words” is by Paula, a mother in Brazil. She requested her daughter’s approval before writing this story. They agreed to call her Georgia to pay homage to her favorite movie director, George Lucas. This story was translated from Portuguese.

When my daughter was first placed in my arms I noticed a unique and exotic beauty, a different kind of beauty. “Different” has been a key word in my life for nearly 22 years. There was something mysterious about her development, which was not only intriguing, but also concerning. I shared my fears with my husband, who did not notice anything different about her. To a certain extent he was right. Georgia was delivered through natural birth at 45 weeks and 5 days. By 3 months of age Georgia had a firm head, and by 7 months she could sit without any support. It wasn’t until years later that I found out that sitting in a “W” position was not appropriate.

Back then I did not know her diagnosis; I was living in a seesaw. At times I would feel restless and fearful, at others blissful. I was happy when Georgia crawled at 11 months, and when she began to walk at 14 months. Little did I know that her walking rhythm and speed were not appropriate.

My fears and anxiety were increased by our aloof relationship. I breast-fed her until she was 7 months, how could she refuse my touch? Why would she reject my arms yet embrace a stranger’s arms?

I was intrigued by her fine motor skills. She did not use her thumb to grab a toy.  When her attempt to get a toy had failed, she would then use her thumb and pointer, her pincer grasp, to get a toy.

I took Georgia to regular appointments with her pediatrician who claimed that she was fine, and reminded me that not all children have the same developmental pace.

I was visiting my mother with Georgia, then 8 months old, when the power went out. We placed some candles around the house; I put Georgia on the table and tried to call her attention to a candle’s light. I noticed that her eyes were pointing in different directions. One eye looked straight ahead, while the other eye turned inward, at this moment I yelled for my mother: “Mom, I know what Georgia’s problem is! She is blind! That explains everything.” We desperately called a friend of my mother’s, who was an ophthalmologist, and asked him if he could examine Georgia right at that moment.

I was much calmer when we left the doctor’s office. He told me that Georgia could see from both eyes, but she had divergent strabismus. We visited a few other ophthalmologists who agreed on the diagnosis, but not on the treatment. Some recommended surgery, while others recommended orthotic therapy to strengthen her eye muscles. We opted for orthotic therapy, which worked on improving the eye’s stability and balance, and on enhancing the integrity of overall eye muscles alignment. A few hours a day, seven days a week Georgia wore an eye patch on the eye that was considered to be working well, to force the malfunctioning eye to work more and, therefore, improve its sight.

By the time Georgia was a toddler she developed myopia and began to wear eye glasses. After a few years I decided to have her reevaluated and the new doctor suggested that we change the lenses sphere which practically cured her of the myopia. Since then she made great progress on making eye contact. However, at times when she felt tired she would avoid eye contact. There was no explanation for her inability to sustain eye contact.

At around this time I took Georgia and my elder son to a birthday party. At the party a man who was a retired pediatrician approached me and said: “Your daughter should see a orthopedist.” When I asked him why, he replied: “Because when an orthopedist sees your daughter, he will tell you that she actually needs a neurologist.” When I asked him what was Georgia’s problem he remained silent. At that moment I felt awful, like the world had just fallen on me. We left the party immediately. I felt vulnerable, emotional. I felt sad, enraged, and regret. I thought: “what if he is right?” Deep down I knew something was different.

The next day I took Georgia to see her pediatrician. I told him what had happened the night before, and shared my fears and concerns regarding her development. I spoke about her apathy towards me, could she be deaf? I asked him to help me find a diagnosis and to referrer me to a competent neurologist. He gave me a few referrals, and told me that Georgia was not deaf.

I took Georgia to a myriad of orthopedists that had divergent conclusions on her diagnosis and treatment. Some suggested that she should undergo surgery and remove one of her foot’s ligaments. They claimed that by doing that her posture would be improved and she would be able to have more control over her body. Some doctors mentioned low muscle tone, which I thought was a consequence rather than a cause. Other doctors recommended physical therapy to strengthen her leg and eye muscles. I opted for physical therapy because it is less intrusive and aggressive.

I finally managed to get an appointment with a neurologist, who examined her and concluded that she had Borderline Disorder. He explained to me that Georgia’s nervous system was developing very slowly, and that was the reason for her developmental delays. He claimed that she needed more stimulation and asked me to do so, in other to help speed up her development. The neurologist requested several exams, which indicated that all was well. Then he requested a CAT scan of her brain. The CAT scan showed a discrete ectasia of lateral ventricle. When my husband asked the doctor for further clarification he said that he could not say anything else without making additional exams. He told us that it might be nothing or it might lead to hydrocephalus, and the only way to know would be by performing regular CAT scans. My world was wrecked, once again. When we left the exam facility we went back to the office of the neurologist who had requested the exams, who said not to worry, because Georgia had a very little likelihood of developing hydrocephalus. He explained that she was too old to develop such a condition. Nonetheless, he requested a CAT scan to be done twice a year, and measured her head every three months.

This was our annual routine until she turned 7 years old, and because the results remained steady, from there on, she was only required to have a CAT scan every three years. But I still wondered: Could this really be the cause of her developmental delays? What about her fine motor skills? The doctors always told me that nothing was related.

I decided to resign from my job as a lawyer. I bought an apartment in Sao Paulo, where I lived with the children, and my husband stayed in our suburban home. We saw him only twice a week. I thought that by living in a big city I would have better access to top-notch doctors and treatments.

When Georgia was 11 months old, she received physical, occupational, speech, and hydrotherapy therapies three times a week. I sent her to a nursery school. I wanted her to engage with other children.

When her school friends could not come over for the weekend, I would invite her friends from acting school. I believe the acting classes played a major role on improving her social skills. I used any excuse to have a party, any holiday or religious celebrations. Children always came wearing a costume related to the occasion. I was always involved in her play. I wanted to make sure that she was not left out, nor would she withdraw from her friends.

Georgia learned how to read and write when she almost 6 years old. She always enjoyed reading and has an excellent memory. She displayed great interest in history and geography. She was slower taking school exams and doing homework, but she never showed any learning disability.

Before I forget, Georgia began speaking when she was 2 years old. She never learned how to ride a bike or dress up her dolls. However, she was very knowledgeable on the subjects she liked; sometimes she showed even greater knowledge than the adults around her. Georgia easily learned how to swim, but she struggled to learn how ski.

Georgia is a sweet and caring young woman. She enjoys social situations. But was not always like that. During her adolescence she experienced stages of irritability and anger. She refused to go out with her girlfriends, and eventually they faded away. During this time she was unable to make new friends, or keep the friends she already had. Her girlfriends began to flirt with boys and go out at night. Georgia, however, never showed interest for boys. She had a few crushes that never evolved into relationships. From time to time I noticed, and encouraged, great progress in her social life. Many times Georgia isolated herself from family and friends. When we were going to see a movie or a play she constantly asked to stay home, but I never allowed that.

Georgia’s answer to everything was “no.” So I accommodated our life style to keep her around us. We only had one television in the house, so that we could learn how to share. Share not only the television but also life. If she wanted to read in her bedroom, I would ask her to read in the living room, so she would stay with us. I always kept her busy so that she did not spend much time without an activity. The only way she would join the family activities was by obligation, but I did that because I knew that at the end, despite the stress to get her in the car, she always had a good time.

Georgia did not have a diagnosis for many years. In fact, it was only a few years ago that I learned about her diagnosis. Georgia has Asperger syndrome. Only four years ago I heard that autism was a spectrum disorder.

For much of the past 20 years, my main focus has been my daughter. Sometimes I felt guilty for not spending as much time with my elder son, who was only a year and an half older. I felt guilty for not demonstrating how much I loved and cared about him. I was very lucky, because he never complained; he noticed and understood that his sister needed the extra care and attention. Today he is a 24-year-old man and he is an amazing human being. I also have two younger neurotypical sons. I must confess that I was quite apprehensive during the last two pregnancies, because I suspected Georgia’s problem was hereditary since I have an uncle who is “different.” But I am so grateful that today at 15 and 18 years old, they are amazing brothers and have nothing but love, acceptance and respect for her.

I never had a doubt about having a big family. All of my children are unique; they live in their own universe. As a mother I try my best to treat them equally. I always give the same advice to my children: Try your best to achieve all that you want in life, but never hurt yourself or others while doing so.

Today Georgia is 22 years old. She is attending college with a major in cinema. Her interests have not changed, but evolved. She likes history, but not just any history, British history. About a year ago we talked to Georgia about her diagnosis. I hesitated to talk to her about it, because I was afraid she would lose her desire to live and chase her dreams. I was afraid she would lose her motivation to overcome the obstacles and even her own self. After we talked to her about it, she decided to stop her treatment with her psychiatrist. After 14 years of weekly sessions she decided she was ready to walk on her own. When I asked why, she replied: “I always wanted to know what the problem was. Now that I know what the problem is, there is no need to continue the therapy sessions.” Her psychiatrist helped not only Georgia, but also the whole family so although I was hesitant, I respected her decision.

Besides attending college, Georgia still sees a team of therapists who support her development. She receives therapies twice a week. She also has a tutor who helps her with her college assignments. Georgia does Pilates and aerobic exercises twice a week. She receives hippotherapy, and takes English classes. She has been to a myriad of classes, such as piano, violin, guitar, ballet, and pottery. She recently got her first job! She works in a pet store and has had two cats and many dogs.

Georgia gets to decide who needs to know that she is on the spectrum, and gradually she is learning how to deal with it. I think I can say today that among all mistakes and good decisions, telling her the truth about her diagnosis was a great decision. Although she knows there is no cure for her disorder, she continues to overcome her obstacles. Georgia still has lot to accomplish and improve, but she has amazing passion and I know she will accomplish her long-term objective to be as independent as possible.

As her mother, I have learned to handle and control my anguish. I try not to worry about the simple daily problems. Among the many things I learned from Georgia, I learned that some problems have no immediate solution, so all we can do is manage these problems in the best possible way.

Georgia has taught me to be patient, objective, happy and empathetic. During my journey I have met children, parents, and even entire families who struggled with the same issues, the same fears, anxiety, anguish, and even worse problems than I had. Most of them did not have the same financial and educational resources that Georgia had.

Like the adage says, “no pain, no gain.” Today I am one of the co-founders of a charitable organization for autism. The experiences I had made me realize that we must work for a common good. Each one of us can do something to promote change. One step at a time and love will keep us together.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Good Days and Bad Days

September 16, 2010 17 comments

This “In Their Own Words” is by Dorie Deebold, a mother of two children, one who has autism.

Our three-year-old son Pierce has autism – and we try our best to plan routine family outings for him and his older sister that we will all enjoy.

As is typical in any family, there are good outings and not-so-successful ones. For me and my husband who are relatively new to this strange new world, it is increasingly difficult to determine what outings will be a great success, and which may prove difficult for Pierce to navigate.

Before school started this year, we wanted to take a trip to Sesame Place.  Knowing how Pierce and his older sister loved the Sesame Street characters, and armed with the confidence that Pierce had experienced water parks this summer with success, we were all excited for a fun day.  However, this particular outing  would prove to not be one of Pierce’s best.  Something about the venue did not work with Pierce’s sensory system on this date, and it was a continuous struggle as we worked through the day of meltdowns, flopping on the ground and the consistent screeching of “We. GO.  HOOOOOOOMMMMMMME!!”

As difficult as it was, we were determined to stay and allow Pierce’s sister to enjoy the Park.

Late afternoon came; while Dad and sister were adventuring on rides, I tried to coax Pierce into his bathing suit to try a small water park – which generally he would love.  But the sand on his feet, the swim diaper, the direction we chose to walk there – everything seemed to be sending him into sensory overload.  It was all too apparent that he could not adjust to this environment today.

I found myself questioning again on this afternoon (knowing full well how non-productive this line of thought can be):  Why?  Why, why, WHY can’t he tell me?  Why can’t he tell me why this day, this place,  this particular routine was so hurtful.  What was it?  The music? We’d been to a festival with bands and he danced the day away just weeks ago.  The crowds?  It was no more crowded than the boardwalk was last weekend.  This mystery of why.  Times like these, I desperately wished to get in his mind to see the world from his eyes, to try to unlock this puzzle.

So I retrieved a sobbing Pierce from his curled-up position and wrapped him tightly in a towel. We found a lounge chair in a quiet area by the “Mini Tidal Wave Pool”  and both relaxed.   I  sat there whispering to Pierce how much I loved him, and how proud I was of him for all the work he’s done. Sitting there on a beautiful September day, watching all of the children play, I closed my eyes and felt us both relax from the high anxiety of the day. And we slept.

When we both woke up, Pierce looked up – dazed and tired – and smiled the first smile of the day.

“Pierce, do you think we should head home now?”

“Okay, Mommy?”

And off we went to find Dad and his sister.

Good days and difficult days – I reminded myself.  And we can’t appreciate the one without the other.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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