|
In the spring of 2009 it became clear that my experiences
with my autistic son, Alex,who was now eleven was a story that
just needed to be told. One fateful afternoon I sat down and started
writing... and two weeks later a book was born. Although it is
still in production at this time, we thought you would like an
opportunity to see into the wonderful world of autism through
the eyes of a very special boy and his moter.
Adventures In Autism
A mother and son’s journey to peace
By
Connie Wisesan
It is my experience that parents of an autistic child can be
a little shell shocked. There is so much pain and denial, and
sometimes plain horror. I know these places well. I have lived
these places. I, unfortunately, have wished both myself and my
child dead because of these places. Luckily that never happened.
Instead we embarked on a journey of love and self understanding.
This book is about hope, this book is about unending love and
miracles -- miracles that can happen in your life too. This book
is about laughing with each other about the crazy world we live
in and the crazier world our children live in. Written here are
words of compassion, exasperation and kindness -- of what it means
to be human and what it means to be a special mother raising a
very special kid. But beyond that I think it speaks to all parents
and the human condition in general. It speaks to the powerful
divine aspect that lives in all of us -- the force of our own
creative powers.
May my experiences and the experiences of my son Alex support
you in loving and may they support you in finding peace. It is
a wonderful adventure after all!
In this book I talk a lot about God. But I am not attached to
that word. I could have just as easily said the Universal Life
Force Energy, The Goddess, Jehovah, Krishna, The Creator, the
Tao, any of the beautiful human words to describe the many faces
of God that are used. In the world of Alex and me they are all
the same. They refer to something bigger than us -- to something
beyond our understanding. So please know that if I had known your
particular word for this very sacred energy I would have used
it in support of you. Alex and I bow our heads in devotion and
gratitude for all that is.
What is a book but simply a collection of experiences into ourselves.
By reading this book you are inquiring into my special point of
view on life. Thank you for taking this journey with me. Originally
I started writing this book out of pain. After a particularly
difficult day with Alex where I had tried everything and nothing
was getting through, I remember getting in the car from the pool,
tears forcing their way up to the surface and saying to myself.
“I am writing a book. I just can’t keep this to myself
any longer. This is an absolutely unbelievable experience -- a
note-worthy journey. I need to relate it in support of all the
loving parents out there that are struggling with the same things.”
Somehow I felt if nothing else, there is support in recognizing
your situation in another. We are not that different, I believe,
and we are all in this together.
In that moment a book was born. I started to write and I couldn't’t
stop. Within the first seven days I had written 103 pages. I wore
the same clothes every day of that week because I couldn't’t
waste one ounce of creative energy on choosing something different
to wear. One of my close girlfriends joked that I was going to
wear that skirt and blouse until it rotted off my body. I didn’t
care, I had so much to say, who would have known? I woke up every
morning at 5:30 am filled with words and I typed until I was empty.
And I would think, “O gosh, has the muse left” But
oh no, it happened again the next morning, and the next.
Nothing here is doctrine, it is just one mother and a little
boy relating their adventures and their unique perspective. Thank
you for joining us in them.
All that said, hold onto your socks we are in for a wild ride
together. “We ain’t in Kansas anymore, we are in the
wonderful crazy world of Autism.”
Shatter my heart so I may have room for limitless love.
And from further along in the book the story of the night Grandma
Sylvi died:
I will never forget the night my mom died. Yes our dear Grandma
Sylvi had been diagnosed with cancer when Alex was about 3 and
had passed away in a year. It had been a rough month with my mom
sick and all Alex's dad had decided to take us for
an overnight to Monterey and the beach which had always been a
very healing place for me. He was always very good about scheduling
fun and adventurous things for Alex and I. Alex's dad was a wonderful
anchor in a sometimes stormy sea. (That was of course when he
wasn’t creating his own storms.)
Alex by this time had already been diagnosed with autism and
we were just then learning how to cope as a family with some of
his bizarre behaviors.
He had made the shift from a normally developing child fully
engaged at 18 months to a completely shifted non verbal autistic
child by his diagnosis at age two. Six months. It took six months
of gradual decline to completely loose him. It started with the
MMR, the vaccine for Mumps, Rubella and Measles that the Doctors
at that time lumped all together all in one.
After the shot within 3 hours he was completely covered with
hives and almost immediately stopped breast feeding. We were so
distracted by the welts on his skin, we hardly noticed that he
had stopped talking to us. At first we thought it was just because
he was so itchy all the time. We thought he was normally distracted.
We tried everything to get rid of the hives. The doctors were
convinced that it was an allergic reaction, so I started systematically
eliminating things from his diet and environment to curtail the
outbreaks. Nothing matched up. I was so busy manipulating aspects
of his life and so filled with fear, I didn’t notice that
he had stopped looking at us. I did notice that he had started
biting his hands frequently and very hard, sometimes drawing blood.
But again I thought this was because of the itching. Finally he
started having trouble breathing and we were rushed to the hospital.
He had been diagnosed with pneumonia and we were admitted.
There is nothing funny or good about this part of the story.
I can’t even tell it in a “Well, this is what we learned
from it” kind of way.” One of medication they gave
him in the hospital cleared up his lungs and the hives. I don’t
know what it was, but we left the hospital with a healthy child.
At least that is what we thought. Time would show us that something
was still not right.
Alex really has never had some of the more severe characteristics
of Autism. He never has spun, or been into hand fluttering. He
is obsessive compulsive but in very small unobservable ways. He
is obsessed with rocks and water and can send hours throwing sand
into the air. But for the most part he looks fairly normal until
he speaks, and then it is another matter. His words or I should
say sounds are more in alignment with a one year old. We were
just getting used to some of his strangeness when time took us
to our wonderful weekend in Monterey.
Getting back to that story. All day long we had soaked up the
sunshine, frolicked by the ocean and played in the sand. Alex
had always loved sand and water. He could stand for hours throwing
sand up in the air and watching it make interesting patterns in
the sky and surf. The patterns felt like prayers. He would give
a little jump with his body to enhance the action as if to say:
“There, that is done.” To this day I have not ever
really understood this repetition behavior, but it didn’t
matter.
We were happy we were free. I had come to a certain peace around
losing my mom. She was very sick and all the family agreed that
it was OK if she felt she needed to go. She had lost interest
in this life and that was OK.
By the time we got back to the hotel from the beach and dinner,
we were tired. I thought we had worn Alex out and had given us
all a really beautiful day with the sun and the surf. Time for
a story and bed. By 10 o’clock Alex was still awake and
we were taking him for walks around the hotel compound. By 11
o’clock he still wanted to watch Little Bear, his favorite
video on the TV. (thankfully his dad in his wisdom had brought
a portable VCR player.)
By midnight Alex was jumping up and down on the bed and making
whale sounds which was appropriate for the local of Monterey,
but not appropriate for a hotel. We had people both above and
below us and on each side. We were afraid management would kick
us out. Now you have two exhausted parents, the threat of eviction
and one very over stimulated overactive 3 year old who just wouldn’t
listen to reason or even mild threats. Every time we would turn
off the TV, he would scream… scream like we were committing
bloody murder.
Not good. Not good at all in a swanky high end Monterey hotel.
At some breaking point I said to Alex's dad we must put him in the
car it is the only way. And it was agreed. “No, no,”
I commanded, “no time for changing our clothes from pajamas
we are in a crisis. And besides, no one will see us. It‘s
one AM .”
Now I must say that Alex's dad loves drama as much as I do and we
were in the thick of it. We grabbed the diaper bag under one arm,
Alex under the other and started our trek out to the car. Because
it was such a high end resort we had had to park the car way across
the compound, out through the lobby, and over a small grassy area
to the outer limits of the parking lot.
Thank god we didn’t encounter many people. What would they
possibly think! Two fully grown adults sporting miss- matched
pajama attire holding a laughing, giggling 3 year, old making
whale sounds at the top of his voice, in the dark at a unbelievably
expensive and ritzy hotel at one in the morning. If the hotel
security wasn’t going to get us, the fashion police were.
As it turned out we were going to be in much more trouble than
that. Finally we found the car, strapped our little whale into
the car seat and tumbled in. “Do you want to drive?”
my husband asked.
“No, you do it. I will sit in back with Alex.”
Ah, the blissful confinement of our own SUV. It was something
familiar something we knew well. All of our moods picked up. Well,
Alex was already beyond happy and entertained, but we were feeling
better. We felt more in control. We got on the road.
“Well since we were out and on an adventure where do you
want to go?” Alex's dad asked. “Let’s drive along
the beach. I am sure the moonlight will look wonderful on the
water.” Yes we actually had learned to be romantic even
with a 3 year old whale in the car.
I remember it being a full moon that night. I remember looking
at the light on the water and thinking how peaceful. I bet there
are whales out there and maybe my very special 3 year old is communicating
with them. Everything was so dreamy.
We came to a fork in the road and Alex's dad said, “which way?”
“Right, go right.” And the ride was just as beautiful
that way. We were driving through some lovely tall trees. Dreamy,
so dreamy, so peaceful.
All of a sudden three things happened at once. Alex let out a
loud sound of joy, the car hit a big bump and there were red police
lights in our back window. I can assure you we were back to earth.
It was 2:10 in the morning.
“Honey! I think there is a police car behind us. What could
it want?” “Stop the car!” And we pulled over
and brought the car to a standstill. We all became still as we
watched an officer with flashlight approach the car. Oh how exciting!
Just like in “Cops!”, a very famous tv show.
“Bad boy, bad boy, what you going’ do? What you going’
do when they come for you?” “What could he possibly
want?” I said. Maybe the hotel called them. The officer
approached the window. “Sir are you alright?”
Hmm a sensible question. It is 2 am. And we were alright, sort
of. We were sleep deprived, exhausted, a little intoxicated by
the moonlight and this indescribable lovely peace. “Have
you been drinking?” Well no, but a drink right now does
sound good. “Yes sir, I am alright. And no, no drinking,”
Alex's dad mumbled.
And Alex started with the whale sounds again. “Is your
child OK?” Oh wow, what a question. How to answer? He has
just recently been diagnosed with autism. He refuses to sleep,
he refuses to let us sleep. He thinks he is a whale, and he appears
to be one of the happiest, most loved kids on the planet.
“Yes,” I said. “We are just having a hard time
getting him to sleep so we are driving him around a bit.”
“Well sir,” the officer started with his most serious
manner. “Do you realize you are driving on a golf course?”
Oh my goodness. Somehow we had left the road way back there and
we were in the middle of one of California’s most famous
greens.
I think I had seen this place featured on the rich and famous.
Did that make us one of the elite?.. Oh I wish I was wearing something
more appropriate for the occasion. Maybe my little peach sundress
with the delicate cream sweater and cream high heeled sandals
to match and white pearls, yes definitely pearls, the ones from
our wedding. No, no time for that.
My husband, I kid you not, turned his head and pointed to me
and said: “She made me do it.” With a completely serious
and intense look. Now of all the sneaky, double crossing, dirty
tricks. Here I had to carry Alex in my womb for nine, count them,
nine months and my husband is blaming his driving on ME!
“Officer,” I started.
“Never mind that,” he interrupted turning to Alex's dad.
“Sir, I need you to very carefully, very slowly follow me
out of here. When we get to the main road, I will point you in
the right direction of your hotel. Where are you staying?…
At that time I want you to go directly to your room and stay there
for the rest of the night. I want you to get some sleep. Do you
understand?”
Yes, yes, what a lovely idea! A Great idea. And he dutifully
escorted us in the right direction. “What a nice caring
man! I bet he wouldn’t blame crazy things on his wife.”
Before we hit the main road Alex was asleep. We transported him
to the bed, and we all slept through the night well into the morning.
I remember just before my head hitting the pillow issuing my last
order of the day: “Be sure to call for a late checkout!”
The next morning the red light was blinking on the phone and
we were greeted with a message from Aunty Liz. Grandma Sylvi had
passed at 2:10 that morning. Did Alex know? Was he celebrating
with Grandma as she transitioned. We will never know for sure,
but I think yes. I think we all felt it, even the whales. It’s
possible he was singing his grandma to the other side. The peace
that passes all understanding was with us.
|
