The Many Faces of Autism

The other night while flipping through the channels, I stumbled upon the movie Rainman. For anyone living under a rock who is unfamiliar with the movie, Dustin Hoffman portrays Raymond; an autistic man who gets "sprung" from an institution by his anti-hero brother played by Tom Cruise.

While watching this movie I was very aware of the fact that when many people think of what autism looks like, they think of Raymond. And, to be honest, sometimes autism does look just like this movie character. Raymond is echolaic, rigid about routines, and shuns most attempts at affection. These can all be very real characteristics of autism.

But not always.

Not every person is as severely affected as Raymond was. Sometimes autism walks amongst us everyday, completely unrecognized.

Autism can be

The "cry-baby" that always cries at the "Mommy and Me" group because they can't handle the confusion of being in a room of 20 other toddlers.

Autism can be

The "scatterbrain" child who never seems to pay attention because he cannot focus on anything other than the hum of the fluorescent lights in his classroom.

Autism can be

The "nerd" who is made fun of for wearing Velcro shoes, because at age 12 she still has not mastered the fine motor coordination to tie her own shoelaces.

Autism can be

The "weirdo" who stares at you just a little too long, because years of socialization training have taught him to make eye contact when communicating, but not necessarily when to look away.

Autism can be

The "bully" who laughs when another child falls down and hurts themselves because they're not quite sure how to show empathy.

Autism can be

The "brat" who tantrums in the middle of a grocery store because the commotion and confusion they encounter in such a setting are simply more than their brains can handle and regulate.

Autism can be

The "stupid" kid who runs across the street, with no fear of traffic, because the compulsion to run, far outweighs his comprehension of danger.

Cry-Baby...Scatterbrain...Nerd...Weirdo...Bully...Brat...Stupid.

We have all known kids who have gotten these labels slapped on them.

We've rolled our eyes when we've seen them act out at stores, at school, or the playground.

We may have even indulged in a bit of, "If I were that kid’s parent they wouldn't act like that!"

I have endured the disapproving stares from other moms at the playground when Justin has melted down for one reason or another.

As a parent you want to scream, "He's really not a brat...he's just on the autism spectrum."

But of course, you don't. Moreover, if you did, I wonder if you would be believed.

Because when many people think of autism, they don't think of perfectly normal looking children, who have reciprocal conversations and like to play with other kids.

They think of Rainman.

They think of severely affected individuals who cannot function in the real world. They think of people with obvious impairments that need our kindness and our protection.

But there's a whole other end to the spectrum that often goes undetected by the general public...until they do something socially unacceptable that makes it clear they're just a little "off". But because they look so "normal", they get branded as nerds, weirdos, brats, etc.

Not people worthy of kindness and protection, or more importantly respect.

That's a problem.

It's a problem because until the population at large starts to understand that autism has many faces, people like Dennis Leary will continue to make asinine assertions such as:

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - your kid is NOT autistic. He's just stupid. Or lazy. Or both"


Then, of course, there's the equally hateful quote from the equally asinine Michael Savage who states that autism is:

"A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out."

The fury I feel when I read such statements can only be matched by the sadness I feel when I realize that many people agree with these ignorant assholes.

To them, autism = Rainman. Any other less severe incarnation just doesn't compute.

And while I in no way mean to diminish the fact that some people are on the severe end of the autism spectrum, I hope to bring some awareness to the fact that more and more we're seeing autism wrapped up in a very ordinary package. These children walk amongst us everyday in very ordinary circumstances.

And with 1 child in the US being diagnosed with autism every 20 minutes, we had better start broadening our definition as to what is socially acceptable pretty damn quick.

This Magic Moment

I love to garden....in theory. Don't get me wrong. I love to look out my front window and enjoy the way my flower beds look when they are freshly weeded and mulched and bursting with color after a long grey winter. I just find that the hardest part, as with so many other projects, is just getting started. But seeing as our house is directly across the street from the local junior high and just around the corner from my older son's elementary school, I was feeling the tinge of embarrassment that comes from everyone in town noticing that our property resembled something akin to the Munsters house.

So, with shovel and hoe in hand, I set out to tend to the weed patch...er, I mean flower garden. A task made all the more difficult as Justin had the day off from his school and was my "helper" on hand.

Luckily, there's something to be said for perseverative behaviors. Justin has always had a love of water-play and I found that I could keep him occupied by filling the big watering can and having him water the flowers. At one point, however, I filled the can a little too much.

Justin: "It's stuck!" (translation: it's too heavy to lift off the ground).
Me: "Is it too heavy?"
Justin: "Wanna help?"
Me: "Sure. Let me pour some water out for you"
Justin: "Oh Thanks!"
Me: "You're welcome."

It was at some point during this that I realized I was actually having a conversation with my son. Nothing fancy-shmancy, but indeed a genuine reciprocal and appropriate exchange of words with my highly echolaic son.

Cool.

Truth be told, we've been having more and more of these "magic moments". Moments where he'll look at me and say, "Look!", while pointing at something. Moments where he'll initiate games (if you consider wrestling a game) with his brother. Moments where he'll see his brother and the neighborhood kids playing in the backyard and he'll get his shoes on and say "Outside?" Moments where I'll catch him staring at me, studying my face, almost like he's seeing me for the very first time, and he smiles.

The thing is, when you tell another mother how awful it is to not have your child respond to you, I think they get it. They understand how heartbreaking it is to never have your precious child look at you and call you "Mommy". But I don't think that anybody can truly comprehend the joy that comes when these moments finally happen. It feel like nothing short of a miracle. Because you never forget how hard won these moments were. You never forget the months of speech therapy just to get him to say the word "cracker". You never forget the PECS, and the sign language, and the ABA, and the reinforcers, and the three steps forward and two steps back. You never forget the moments where your faith wavered and you thought, maybe he'll never talk.

And then he does. And it's magic.

Beautiful Boy

Before you go to sleep

Say a little prayer

Every day in every way

It's getting better and better

Beautiful Beautiful, beautiful....
Beautiful Boy

Out on the ocean sailing away

I can hardly wait

To see you to come of age

But I guess we'll both

Just have to be patient

Yes it's a long way to go

But in the meantime......

John Lennon

Yesterday, I did something that I usually don't do. I cleaned the house. I picked up the toys and assorted pieces of clothing that seem to perpetually litter our living room. I also put away the dozen or so DVDs that were strewn about the TV cabinet. That's when I saw it. It being the home movies we had converted from VHS to DVD.

I tried to resist the temptation to watch. Right after Justin was diagnosed I would watch this DVD over and over, using Ryan as a developmental yardstick to measure where Justin "should be". I stopped watching when I realized how torturous it was to see just how far behind Justin really was compared to his older brother.

And yet, here I was, alone in the house.....

I put the DVD in the player and watched.

And then I cried.

And when I say cried I mean big sloppy, wreak your make-up, catch your breath sobbing.

In the past, these movies always made me sad because it was always a reminder of how delayed Justin was. But, yesterday it made me sad for a different reason. Because as I sat and watched Justin in his first year and a half of life, I see a beautiful, happy and healthy boy. Completely "typical" with a face that was like sunshine. Then as the months go on, you can see the light slowly go out of his face. You can hear me calling from behind the video camera, "Justin, Justin. Look at mommy, Justin" only to be ignored.

As I watched, the thought that spun around my head was, "where the hell did my baby go?" Because he was there. He really was. So perfect and poised to develop into a typical toddler. Then, instead of leaping forward, he slowly slipped down the slope.

I was completely overwhelmed by just how much I missed that sweet happy baby. How much I missed our life when autism wasn't a word in my daily lexicon. And I wept.

I think what surprises me is just how raw it still is. Even after nearly two years of living with this diagnosis, it's still so tender, like a sprained ankle that never quite healed properly.

I took the DVD out and put it away. I know a day will come when I'll be able to watch it and not feel sad. I just wish I knew when that day would come.

The Joy of Motherhood

So, yesterday was Mother's Day. A day when mother's are to be given special treatment for all the wonderful things they do throughout the rest of the year.

Yeah...I think my kids missed the memo.

My mother's day morning was spent trying to avoid my kids as they ran throughout the house chasing each other, wrestling with each other, yelling at each other, and doing their best imitation of the Lost Boys from Peter Pan. Ahhh, such bliss.

Honestly, the noise and the commotion was more than I could take, so I quietly escaped to my room to watch the Food Network and I let my husband deal with the restless natives just outside my door. Not exactly a great way to kick off Mother's Day.

I remember when I was pregnant with Ryan and how I always imagined motherhood would be. I'd fantasize about being the one they would always show on TV. You know the one in the commercials dressed in a white robe holding her sleeping cherub. The picture of serenity filmed through that gauzy soft Cybil Shepherd from Moonlighting lens. Then there was the older mom picking her kids up from school, always stylish and showered as she dashed off to some PTA event. These moms were beautiful. These moms were put together. These moms, as it turned out, were so not me.

My dreams of newborn baby bliss were dashed when both my kids suffered from colic for their first few months of life. As for being the stylish PTA mom, I'm still working on the just being showered part. Yes, I must admit that I sometimes feel as though I have somehow fallen short in my endeavors as a mom. Moreover, there is good reason to think so. I am a "bad" mom because:

I have let my children go days without bathing them and they start to resemble a member of the cast of Oliver Twist (Please Sir, can I have a bath).

I have pretended not to notice when they have picked up some piece of cookie that fell on the floor last week (I also don't clean my floors nearly enough).

I've let Justin get away with things I would never let Ryan do, with the feeble excuse that, "Justin doesn't understand like you do", when what I really mean is, "Justin doesn't understand and I'm not in the mood to turn this into a "teachable moment".

I have eaten yummy treats in the kitchen when my kids were occupied, because I just didn't feel like sharing.

I have given both my kids a nip of melatonin, not because they needed to go to sleep, but because I needed them to go to sleep.

I yell...a lot. Sometimes I even spank. However, the guilt of such acts usually renders me so guilty that I shower affection on them for the days that follow.

Therefore, it is true. I am highly flawed. But sometimes I do get it right. I get it right when:

I read Skippyjon Jones for the 100th time, complete with silly voices.

I always get my kids the Happy Meal because even though I know half the meal will go uneaten, I remember how cool it was to get the toy in the box.

Ryan scores a goal in soccer for the other team, and I still yell "good effort" and mean it.

Justin "escapes" upstairs to his own little world, and I still go up and pull him out, even when I'd rather be relaxing in my chair with a glass of wine and a House re-run.

Ryan asks for "a cuddle" and I rarely say no. And when Justin follows suit and climbs onto my already crowded lap, I know there's no better place to be than beneath that tangle of feet and elbows.

So when all is said and done, I guess I will feel good about being the highly flawed mother that I am, because at least I know that sometimes I do still have my moments.

Happy Mother's Day

It's been said that "good writers borrow from other writers, while great writers steal from them outright". With that spirit in mind, I'd like to share with you something this Mother's Day that I wish I had written.

MOTHERHOOD... IT WILL CHANGE YOUR LIFE

Time is running out for my friend.

We are sitting at lunch when she casually
mentions that she and her husband are thinking
of "starting a family." What she means is that her
biological clock has begun its countdown and she
is considering the prospect of motherhood.

"We're taking a survey," she says, half jokingly.
"Do you think I should have a baby?"

"It will change your life," I say carefully.

"I know," she says. "No more sleeping in on Saturdays,
no more spontaneous vacations..."

But that is not what I mean at all.

I look at my friend, trying to decide what to tell her.
I want her to know what she will never learn in childbirth
classes. I want to tell her that the physical wounds of
childbirth heal, but that becoming a mother will leave
her with an emotional wound so raw that she will be forever
vulnerable.

I consider warning her that she will never read
a newspaper again without asking "What if that had been my
child?" That every plane crash, every fire will haunt her.
That when she sees pictures of starving children, she will
look at the mothers and wonder if anything could be worse
than watching your child die.

I look at her carefully manicured nails and stylish suit
and think she should know that no matter how sophisticated
she is, becoming a mother will immediately reduce her to the
primitive level. That a slightly urgent call of "Mom!" will
cause her to drop her best crystal without a moment's
hesitation.

I feel I should warn her that no matter how many years she
has invested in her career, she will be professionally
derailed by motherhood. She might successfully arrange for
child care, but one day she will be waiting to go into an
important business meeting, and she will think about her
baby's sweet smell. She will have to use every ounce of
discipline to keep from running home, just to make sure he
is all right.

I want my friend to know that everyday routine decisions
will no longer be routine. That a visit to Mc Donald's and a
five year old boy's desire to go to the men's room rather
than the women's room will become a major dilemma. That
right there, in the midst of clattering trays and screaming
children, issues of independence and gender identity will be
weighed against the prospect that danger may be lurking in
the rest room.

I want her to know that however decisive she may be at the
office, she will second-guess herself constantly as a mother.
Looking at my attractive friend, I want to assure her that
eventually she will shed the pounds of pregnancy, but will
never feel the same about herself. That her life, now so
important, will be of less value to her once she has a child.
That she would give it up in a moment to save her offspring,
but will also begin to hope for more years, not so much to
accomplish her own dreams, but to watch her child accomplish his.

I want her to know that a cesarean scar or stretch marks
will become badges of honor.

My friend's relationship with her husband will change, but
not in the ways she thinks. I wish she could understand how
much more you can love a man who is always careful to powder
the baby or who never hesitates to play with his son. I think
she should know that she will fall in love with her husband
again for reasons she would never have imagined.

I wish my modern friend could sense the bond she will feel
with other women throughout history who have tried desperately
to stop war and prejudice and drunk driving.

I want to describe to my friend the exhilaration of seeing
your son learn to hit a baseball. I want to capture for her
the laugh of a baby who is touching the soft fur of a dog for
the first time. I want her to taste the joy that is so real
that it hurts.

My friend's quizzical look makes me realize that tears have
formed in my eyes.

"You'll never regret it," I say finally.

by Dale Hanson Bourke
Chicken Soup for the Woman's Soul

Sweet Music

So, last week, I was busy doing dishes while Ryan, my oldest, was busy coloring at the table. A rare moment of quiet in my house and I was thankful for the reprieve. Then, much to my surprise, a familiar sound broke the silence. It was the unmistakable sound of pee-pee hitting the toilet.

Now, with Ryan at the table and my husband on his computer, it took a moment for it to register that this sound could only be coming from Justin.

Oh my God!

He's going potty by himself.

After nearly 9 months of potty training, Justin went potty by himself. After 9 months of PECS, and reinforcers, and Potty-Time with Elmo, and cleaning up messes, and stops and starts, and Screaming (his), and tears (mine).......Justin quietly went into the bathroom and went potty all by himself.


I have to say that one of the benefits of being the parent of a child with special needs is that you never- ever- take anything for granted. Even the smallest of accomplishments are worthy of celebration which means that the "milestone" accomplishments are worthy of a parade.

The sound of that tinkle was like music to my ears. The only thing that has topped it so far was a few months ago when he started calling me "mommy" once again. Not echolaically and not because I told him to "say mommy". But affectionately, excitedly and genuinely calling my name. That was more than music to my ears. That was a symphony worthy of a standing ovation.

Following Shadows

"That's so cute; he's trying to follow his shadow". This harmless comment came from an older woman addressing my 2-year-old son Justin. We were on vacation in Maine and Justin was indeed following his shadow along the main walkway by the entrance of the beach. What this woman did not know, was that Justin had been doing this for well over half an hour. He was oblivious to the vast and thunderous ocean before him, oblivious of the people who were nearly tripping over him trying to get past him. Down by the water's edge, my oldest son and my husband were engaged in the serious work of collecting crabs, shells and other sandy treasures. But Justin's only focus was his shadow. Possibly, because he was fascinated by the way it danced when he did. Possibly, because the beach presented such an onslaught to his senses that he desperately needed a distraction. I smiled weakly at this woman as she passed us by. I know she meant no harm with her remark. But inside, I crumbled just a little. I crumbled because just a month earlier my husband and I sat in a doctor's office and received the news that Justin was on the autism spectrum.

To say this news came as a shock would be an understatement of vast proportion. Sort of like claiming the Titanic was a boating accident. But this was no boating accident.

Truth be told, I almost canceled the appointment. Just two weeks prior, Justin had gotten tubes put in his ears because the ENT discovered he had some conductive hearing loss, probably brought on by a nasty ear infection.

Hearing loss. That was the problem. He's not talking because he's having trouble hearing.

Still, we had waited two months to be seen by the developmental specialist. We might as well go see what she has to say. Well, what she said was that my child was on the autism spectrum.

Huh? Come again?

Not my child. My child is affectionate. My child looks at me. My child just can’t talk yet! As the doctor (who I would come to loathe) pointed out, my child also didn't point. My child also did not express any wants or needs. My child didn't share any attention. My child had no interest in other kids. My child didn’t perform any adult directed activities.

We tried in vain, to explain, that he was just stubborn (a trait he inherited from both of his parents). She tried, with equal conviction, to explain, that in her twenty years of specializing with this disorder that she had no doubt that our child was on the autism spectrum.

Denial is a river that runs deep through our house. And I jumped right in because the water was fine. My son did not have autism. In my previous life, before I was a stay at home mom, I worked for ten years with adults with developmental disabilities, many of whom had autism. I've seen too many affected adults who spend their days rocking in a corner. Adults who are violent and frustrated because they can't effectively communicate. Adults with terrible scars on their bodies because they inflict injury on themselves. Adults who play with their feces because they "like" the way it feels. Adults who were sad and lonely and lost. That was not my son. Don't you dare tell me that is going to be my son.

The brain is an amazing organ really. I truly believe that it has a self-protective mechanism that allows you to only absorb bad news a bit at a time. And so it was, that the slow realization that Justin was on the autism spectrum began to drizzle into my consciousness, just a drop at time at first but then the deluge of reality quickly began to sink in. I started to see what that doctor had seen when she evaluated Justin. We were so focused on the fact that he wasn't talking that we completely missed just how disconnected he was. How he would sit forever and draw circles over and over. How he would escape upstairs to his room and just lie on his bed looking at nothing. I just thought he was my "good baby"...quiet, undemanding, never makes a fuss, a stark contrast to the glorious tornado that is his older brother.

Suddenly, I began to see him through this lens of autism and a part of me just died. That part of me that carelessly took for granted that my children would grow up happy and healthy. That they would go to their senior prom and have lots of friends. That they would go to college and pursue their passions. That they would fall in love and get married and have babies themselves someday. That feeling of gleefully taking life for granted and knowing that everything will work out fine, just vanished. It was replaced with questions. Why did this happen? Was it something I did or didn't do? Will he have friends? Will he be able to live on his own one day? Will he ever call me "Mommy" again?

But mostly, why did this happen?

That's the one question I've never been able to quell. That's the one that keeps me awake at night. How is it that one day we had a perfectly healthy and happy baby boy and a few scant months later we had a child who was slowly and insidiously slipping away from us? That question will haunt me for the rest of my life.

It's been nearly 2 years since that day on the beach and Justin will be 4 this summer. These 2 years have been filled with lots of speech therapy, occupational therapy and special education through our local Early Intervention program. He is currently, in a wonderful integrated pre-school 5 days a week where he continues to thrive.

Yet, I still think back to that woman's remark, because so much of the past 2 years has felt just like following a shadow. Always following that shadow of hope and praying it will lead my son to a place where his everyday life is filled with joys to be discovered, not obstacles to overcome.

Luckily, I can say that my son has come such a long way. But he still has so far to go.

Anybody with a child on the autism spectrum has probably heard them say (whoever "them" are) that the reason Early Intervention is so important is that after age 5, the "window of opportunity" starts to close. While I'd like to believe this isn't true, I must admit, I am starting to feel the heavy weight of that window closing. Not just on my son's ability to progress, but also the window closing on this phase of my life. For the past two years since Justin's diagnosis, I've been living my life in a fog, vacillating between feeling sad, scared and just plain sorry for myself. This summer I turn 40 and when I think back on the last 20 years they seem to have gone by in a heartbeat. Which is why I know the next 20 will do the same. I am feeling desperate to be in the moment and hang onto these days as much as possible. To savor the residual “babyness” that still lingers in my children. To enjoy the fact that my parents are still vibrant and healthy. To embrace my husband with a love that only grows stronger year after year. I am extraordinarily lucky and I can't have the window close on all of this. Not now. Not yet.

So I will write.

I will write to remember. I will write to rejoice. I will write because it's cheaper than therapy. But most of all, I will write so that someday I will have a record of this most precious time in my life.