My brother is here,
Amusing, sometimes obnoxious,
But always engaging.
I’d wish he’d go away
So I could attend to my
Own business.
But he means well.
It’s fun to converse
With him,
But it’s difficult to convey
What I want to insinuate.
Gestures and movements
Aren’t that revealing.

My mother is here
To feed me a dinner
That I never chose.
It appeared that way,
But alas,
It was not my desire.
Interestingly,
A nod and a shake of
The head
Are one in the same.
It’s like speaking
A native tongue
In a foreign country
Without an interpreter.

My dad is here
To make me laugh,
To make me smile.
To make me happy
When I cannot say I am.
To say the hysterical
When I cannot say it myself.
To tell jokes
When I cannot relay
The funny few
I saw on television.
But we share the laughs
Together,
And together,
We speak.

Here is my dog
To steal my dinner.
To lick my face,
And raise my morale.
He does not understand
My inadequacies,
But he does understand
We are the same.
His namesake bears
The unspoken code
We share,
And a bond that
Keeps us
Inseparable.

This is my family,
living in my world,
but not seeking residence.
But nonetheless,
They are here
To see me through the day.
To be my operator,
To connect me
to the things
And people
With whom I want to speak.
My nature has changed me,
But I cannot change
My nature.
Sometimes, though,
When it gets cold
And dark,
And perhaps lonely
In this cavernous pit.
I wish I could
Say three words.
No more,
No fewer,
It’s all I would
Request.
Just to tell them,
My communicators,
My allies,
My friends,
My soul mates,
My thoughts with sound,
I love you.

After a battery of tests we realized that this was going to be a learning experience for doctors as well as family so we all decided that we were going to look out this window on the positive side rather than wonder how this could happen “to our perfect little family”. The past 8 years have been very interesting and very rewarding. We have been on a journey we never envisioned. Although not without frustration we have watched a child grow and move forward because his mother, father and sisters devoted numerous loving hours of attention to him. Rather than turn their head in another direction Mollie and Guion and daughter Madison(and eventually Olivia who was yet to be born) would spend most of their free time motivating Simon to learn basic skills that we all take for granted.

Over numerous visits we have seen this child improve beyond all expectations. I hope the doctors someday do a case study and relate to others just what can be accomplished when one sets their heart and soul into bringing up a special needs child. To look down at that gentle smile on his face when he looks into your eyes, having just accomplished a task,is worth a million words. Special Needs mean special rewards and they are there in spades when people take the time to love and assist them as they navigate the paths that God has sent them on. These children are very special children and the journey will be ongoing. To be part of that process has its own reward as a grandparent. But the real heroes, as we go forward, are Simon and his immediate family as they are together 24/7. When we step away from the day to day environment they live in and see them every couple of months, one truly can grasp the progress being made. We are all on this journey together.
I hope others will be lucky enough to have a family like Simon’s who care unconditionally and will sacrifice just about anything to give him his very best chance at living a normal life.
This journey may be far from over, but it reminds me of a John Steinbeck quote in “The Grapes of Wrath”

Life breaks everyone but afterwards
some are stronger in the broken places.

As soon as I returned home I began to research via the Internet. I knew it was important for all of us to understand, to the best of our abilities, what we might be facing in the future. I could find very little information regarding his syndrome, apparently because it was so rare that there was little documentation. What little I could find was bleak. I immediately decided that I would not share the bulk of the information with Simon’s parents. Firstly, I had no way of knowing how accurate the information was, but more importantly because it offered little in the way of hope.
And what Mollie and Guion needed was exactly that, HOPE , along with deep and sincere and complete support – the knowledge that they were not alone, and that anything was possible.

Our journey since that day in June 2001 has been life-affirming, faith-affirming, and love-affirming. Simon has defied the odds. Where “they” said he might never walk, he is running; where they said he might not talk, he is talking; where they said he would probably be severely handicapped mentally, he understands almost everything. He is in a “normal” public school, spending 50% of his time learning along with the other kids, and 50% of his time learning with the help of a special needs teacher. He is thriving; he is happy; he is social; he is delightful!

Mollie and Guion moved to Baltimore County primarily because of its reputation for special needs programs. And they were right. The help and resources they have received have been terrific – including a special car seat, a bicycle “add-on” for Simon to give him extra support for his upper body, and various therapeutic programs. These items were extremely expensive, but they did not have to pay for them. However, I want to emphasize that YOU HAVE TO ASK for everything. No one calls you to inform you of opportunities. It takes many phone calls, persistence, and perseverance to find out what is available and what you qualify for. It is daunting but doable. It is frustrating, but fulfilling.

Every new parent is chronically tired during the early years. This is part of one’s bargain with the universe: give me a child and I will give my all to keep that child happy and safe. The parent of a special needs child is, perhaps, even more so because of the need to be resourceful as well as super-vigilant. The rewards, however, are the same as for the parent of any child: watching him/her grow and develop in his/her own special way, the grand smile and sense of accomplishment from that child at every new achievement, and the sense of pride you feel when you know that you have kept your part of the bargain.”

We know there will probably be many things Simon will not be able to master. And that is hard. We worry, of course: Is there a point that he will cease to progress? (We don’t think so.) Will he be able to take care of himself as an adult? (We believe he will) Will he be happy? Yes! His charming personality, ability to make friends, his desire to please, and his determination will guide him and help him.

We, his extended family, have learned much from Simon. We are all kinder, gentler, less judgmental, more patient, and less selfish when he is in our presence. We are grateful for the experience of Simon, for what it has taught us and how it has helped us to grow into better human beings. My heart rejoices when I watch Simon with his cousins and siblings. Never, in the past 8 years, have I witnessed from any of them a moment of meanness or impatience. And I think that is extraordinary. …

Simon is extraordinary!

I replied, “Yes, I have.”

“Why, Daddy?”

Wanting to keep it simple, I shared, “Most of the time I am comfortable with the Parkinson’s, but on rare occurrences it gets bigger than I can handle and I need to cry.  That’s all, honey.”

Without hesitation, she responded, “Let me tell you a story.  Once there was a man who lived in a house with eight other men and it was crazy, loud and difficult to manage.  Desiring a change, he went to his rabbi and shared, ‘Rabbi, I live in a house with eight other men and it’s too loud and confusing for me.  What can I do?’
The rabbi responded, ‘Do you have a brother?  Have him move in with you.’
One week later the man arrived at the rabbi’s again, ‘My brother has moved in and it’s just as crazy.”

‘Do you have an aunt?  Have her move in with you.’

One week later the man returned and reported, ‘My aunt moved in and it’s even wilder.’

‘Do you have a horse?  Move it in the house, also.’

Again, one week later, ‘I have moved the horse in and now it’s even louder with less room for each of us!’

‘Do you have a dog?  Well, bring him in the house.”

And so it continued for many weeks until the man arrived one day and stated, ‘You know, Rabbi, things are not better, worse each week, as a matter of fact.  But I have realized something: things weren’t so bad when there were just eight of us living together.’”

With this my daughter paused for a moment and then continued, “See, Dad,  things could always be worse.”  And then she offered, “I wish I could do more for you.”

With a heart changed from heavy to full the tears came again, and I humbly and gratefully replied, “You just did, honey; you just did.”

But in our kitchen
The creases stretch across you like power lines
Linking places that can’t hear each other anymore

I know what it’s like to play pretend so well
You start to believe yourself
But the disconnect is obvious
Brain signals caught in static of your limbs
The tremor casting a thick shadow over your right side:

The disease was a tattoo you hid from me
Was this indelible ink spelling there is no escalator back up
To where you came from- this is a one way street
You cannot go back to the body you had

The day you hit pause
You brought me to your parents’ house
Told me you had gotten sick but lucky
Hid the snow globe settling in your sternum

The year your handwriting went
I was this little beaming votive
Still believing the doctor when she told me
You were not a question that would go
Unanswered

The year you stopped teaching from teaching
I was the spark plug
Picking the glow in the dark stars
From my ceiling
Angry about all the wishes I’d wasted
About losing something I could still see—
I’m not burning anymore

I am nineteen now
Do not try to paint this canvas
With more colors than your pallet has
I know there are days when you wake up
Like an anchor at the bottom of your bed
Weighted by the memory of easy it used to be to sit up

Your body is the house that never got rebuilt
Your body is the ninth ward
Is a coat hanger
Is this lead pipe dragging

And I wish every adoringly unimportant home video
You shot of me was of you because
Some days I can’t remember how you looked
How you spoke, the precise angle of your voice
The whip your tongue
Before your mouth was a floor scattered with child’s toys
Before you could speak without tripping
How you smiled, told me stories
Laughed from the floorboards of your stomach

I am old enough to know now
To see this origami for what it is
So tell me where it hurts, tell me this is not the place you expected to tear
And I will hold you, delicate as insect wings
And tell you that
In the final days of your life
When the inanimate object of body
Will not permit you to move
Will not allow you to speak
I will be your voice
When the doctors call you an invalid
Or a vegetable
I will yell over the machine beeps
That you have become an endless conversation
With God
You have unfolded
And are not made of paper anymore
And your body is a just shell
That is finally too small
To hold you in

When the Parkinson’s finally pitched camp in my body, it began swiping activities and abilities at a steady pace.  I had been a distance runner for years; it snagged that. I had played softball ever since my sophomore year in college; it took that.  Being fairly well-coordinated, I had always enjoyed the challenges found in the woods requiring agility, balance and stamina.  It robbed me of those.  But when it began to wrap its tentacles around my piano playing, fingers refusing to follow directions, the loss was the most painful one yet.

I grew up in the shadow of an older brother who was a gifted musician; consequently, I minimized my abilities and viewed piano practicing as a necessary imposition.  I put my time in and that’s it.  Much to my surprise, when I entered college I uncovered a new interest in the piano.  I played in a band trading classical music for rock and roll. For the first time I discovered enjoyment and some talent, which I parlayed into a passion. I grew to love playing the piano.  If I entered a room that housed a piano, I would instantly feel the compulsion to play.  It didn’t matter if the piano was in a friend’s home, a store, or in the Breaker’s mansion in Newport, its magnetism would pull me to its keys.

As the progression of the Parkinson’s leapt forward, my passion for the piano dimmed as my brain would send my fingers direction, and my fingers would brazenly disobey.  Whenever I sat at the piano, I was met with frustration as now my disability was staring me directly in the face taunting my efforts to do what I had always taken for granted.  My response was one of passive acceptance and I gave away my upright Chickering and one electric keyboard.  I would show this disease; I just wouldn’t play.  And so, the Parkinson’s subtracted another source of enjoyment from my ever-diminishing list.  For the next two and a half years I avoided playing the piano and successfully muted the voice within that had once sung a beautiful tune.

As the writing and poetry teacher at my high school, I had been facilitating monthly poetry readings for students over the previous seven years.  My keyboard, once a staple at these readings, quietly disappeared without an explanation.  Occasionally, students would politely inquire about the piano’s absence to which I would offer some lame excuse; eventually, they stopped asking.  That is until the day Jo Finkle begged me to bring my one remaining keyboard to the next Poetry Reading under the guise of someone else wanting to play it.

That night I arrived, set up my keyboard, and took my place in the back of the room.  The Poetry Reading was proceeding smoothly until during a pause one student asked me to play my keyboard.  I graciously declined, but I had become the crux of a conspiracy.  The students began chanting my name and it appeared the only way out of this dilemma was to play the keyboard.  Reluctantly, I moved to the front of the room and took my place behind the piano.  I began and surprisingly my fingers were rather well-behaved.  I finished one song and to the call of “Encore” plowed through another.  When finished the kids gave me a standing ovation, which felt good but wouldn’t change my relationship with the piano a single bit.

As the night came to a close, Jo began helping me pack up the keyboard when all of a sudden she stood straight up, looked me right in the eyes and offered this gift:  “You know, Mr. Cameron, you’ve been so focused on what you can’t do, you’ve forgotten what you can do.”  Unaware of the weight of her statement, she returned to packing up the keyboard.  But when she looked up again and saw the tears trickling down my face, she immediately apologized for her words.
All I could reply was, “You misunderstand my tears,” and I reached out and hugged her.

Those innocent, unassuming words offered by a young woman who became my teacher that night were the catalyst for a reinvention of how I would posture my disease.  I started playing piano again and enjoying it.  I realized when I made mistakes before, I had been the only one passing judgment. Now embracing a more relaxed posture, I gave myself permission to hit clunkers free of guilt and I wasn’t surprised when my playing slowly began to improve.  I continue to be amazed with my part in the healing process and am reminded that we cannot control the events that occur in our lives, merely how we respond to them.

With the help of my 16 year-old teacher I was able to significantly alter my healing by choosing to see ability where I had once seen only disability.

Gregory was diagnosed with autism when I was only six. I don’t recall having the conversation I must have had with my parents about it. I don’t remember Greg starting to talk, and then suddenly not talking at all. And I don’t have any recollection of my parents being moody, or sad, or angry during this time, although I’m sure they must have been. Greg wrote on my homework; all babies did that. I would have to be more careful to keep my projects out of his reach. We both loved music. We played my parents’ oldies mix tapes on the stereo; I did jazz squares and Greg spun in circles on the rug.

As Greg and I grew older, the differences between us became more obvious to me. He was a picky eater, a problem complicated by sensory and digestive issues common in children with autism. But what I understood was that while I had to finish every bite of my pancakes, Greg was allowed to leave the table with half of his uneaten. I couldn’t raise my voice, because Greg was extra-sensitive to noise, and the sound of my yelling could spark a huge temper tantrum. If Greg punched my arm—a stage that, luckily, he grew out of—I couldn’t punch him back. “It’s not fair,” became something of a mantra. Many an afternoon ended with me listening angrily as my parents explained again that Greg was different, that he couldn’t understand some of the things I could, that some things in life just weren’t fair, and they were sorry.

But I was also thrilled by how easily I could launch Greg into hysterical laughter by bouncing him higher on our backyard trampoline. I blew bubbles for him to pop. I raked leaves for him to jump into. On the rare nights that my parents went out, it was me, not the sitter, who sang Greg lullabies, reassured him that Mom and Dad would be back, rubbed his back when he cried, and sat up with him until he fell asleep. I appointed myself Greg’s go-between, charged with making the world make more sense to Greg and making Greg make more sense to the world.

We’re a lot older now. Greg has just turned twenty, and at twenty-four, I am a newly-minted speech pathologist specializing in working with children with autism. Growing up with him has informed most of the major decisions in my life so far: where I live, how long I’m comfortable being away, what I do for a living. I consider Greg and I to be very close, although it’s certainly not in a conventional way. We play tag in the public pool near my apartment. We belt Broadway lyrics on the phone. We give a lot of hugs. He tries to get a rise out of me by quoting from kids’ movies he knows I hate. I tease him good-naturedly and get a thrill when he asserts himself and tells me, “Natalie, stop bothering me!”

It’s not that Greg’s diagnosis wasn’t heartbreaking news. It was. It’s not as if he functions like any other twenty year-old these days. He doesn’t. It’s not as if I don’t spend time worrying about what will happen to Greg when he ages out of school, or when my parents grow too old to care for him, or when I grow too old to care for him. I do. But day-to-day, Greg is a happy person. He smiles, he sings, and he is almost always laughing. I couldn’t be more proud of how hard he tries and how far he’s come, of how far he and I have come together.