Here we go.

Jul8

Alrighty friends . . . Please whisper a prayer for safe travels as my son heads off on his first adventure, by himself. I am so proud of him, and nervous. Mostly proud. I remember how anxious I was when he took the city bus for the first time, I may have needed a Xanax when he hopped on the trolley by himself for the first time. Okay, the first several times. Today as he boards the plane, I may need two!

I know he is a man, almost 25 now, but this is monumental. It’s hard to even describe the well of emotions this stirs. I know some of you will relate on a level only a parent with an autistic child can relate, I know you understand the hugeness of what is happening today.

In this moment, I haven’t yet found the words to describe the magnitude of what is taking place, I’m not certain I’ll ever be able to accurately convey the depth of this occasion.

Whisper a prayer for me as well . . .

Holding Hands With Joy

Jul2

Acceptance is the greatest gift we can give to those who may be different in some way. I was fortunate to have learned early in life to accept those who were not just like me, I was also fortunate to be accepted by them in return.

My mother taught me well, I played with children who were different and they played with me, I never knew others shunned them or judged them until I was blessed with a life changing event, a moment in time which cemented my resolve to help and advocate for those others would not.

I’m not certain just how old I was, perhaps twelve or thirteen, right around the age I felt I was too old for Girl Scouts but wanted that last badge. My girl scout troop was invited to a place called Hope Cottage. It was a home for physically and mentally disabled people. It was an emotional day for all of us; it would be years before I grasped the full meaning of all that transpired during our visit.

From the outside looking in, it was a building like any other, nothing fancy, maybe even a little run down. When we stepped through the doors, we entered into a world we never even knew existed. As I looked around, I noticed a young man, sitting alone. He seemed to be having the most wonderful conversation with someone only his eyes could see. Not too far away sat another boy, rocking to melodies only he could hear. A girl, older than me judging by her size, was seated in an adult sized high chair of sorts, being spoon fed by one of the care givers.

Her name was Joy and I will never forget her. As our guide was introducing us, one of the girls in my troop noticed Joy had on a rather large diaper peaking just above the waistline of her pants and began to giggle and whisper about it to her companion. They were both taken from the room immediately. Joy just smiled an innocent, unknowing smile and turned back toward her meal.

Our guide explained Joy had been shaken when she was an infant and even though her body continued to grow, in her mind, she was still the playful baby she’d once been. One of the girls in my troop began to cry and was taken from the room as well; Joy looked toward the door and with a mouthful of oatmeal said “Hug?”

Suddenly the room began clapping for her! “Good word Joy!” She beamed, she absolutely beamed. I couldn’t help but smile even as a tear fell from my eye. I was asked if I wanted to leave, but I didn’t, I couldn’t.

I remember looking around the room at the drawings decorating the walls. Some of them could have easily been drawn by toddlers while others were amazing works of art. It was as I looked upon one of these portraits, a young man whispered, “That’s mine.” I smiled as I told him it was a beautiful picture. I had no idea then it was his, a glorious work of art created by a boy who lived his life somewhere along the autistic rainbow.

Joy began to cry as the oatmeal was being wiped from her chin, I found myself by her side offering words of comfort. Her big baby hand took hold of my arm, the woman firmly said “Be soft Joy.” She was. She smiled at me; she truly was a beautiful baby.

Before I knew it, we were being rounded up to leave. I think part of me did not want to go and the other part of me wanted to run and never come back. I experienced many emotions in the days and weeks to come. I felt sadness, confusion, pity, perhaps even anger.

Soon, my sadness faded as I realized they were not sad. I’d not seen frowns on the faces of those children, I’d seen beautiful smiles. My confusion vanished with the help of my mother’s wisdom. I realized I had no right to pity them; they did not want it or need it. Any anger I may have felt was fleeting, it was more of a helpless type of anger. The sort you feel when you think you should be able to change something you know you cannot.

Years later I drove past the run down home and saw a mansion. I looked past the unkempt grounds and the peeling paint and saw a mansion. Through the window I saw angels. I have always wondered if they were the children who resided in the cottage named Hope or if they were the care givers who kept watch over them. Maybe they were all angels, simply here to teach us and touch our lives.

That day changed my life forever. Maybe it was that day, as I looked into the eyes of Joy; God decided he would bless me with children who would require a little more than most. Children who would hear melodies I could not. Children who would live in a rainbow of colors I would not always be able to see.

I often think of the young girls who laughed and I hope they learned something from their experience, I hope they took something home and taught it to those who should have taught it to them. I think of the girl who could not stop her tears from flowing and I hope she found peace and understanding.

Our world is made up of more than color and social status, more than what we see with our eyes, we have to look with our hearts as well. We owe it to our children and their children’s children to make the future a place where all are accepted and never will there be a need to ask if children should be exposed to angels . . .

I will never forget that day. I will always be thankful I was given the opportunity to stand among angels, holding hands with Joy, in a place of Hope.

Crystal R.Cook

Subjective Variation . . .

Jul1

I have pretty honest kids, I really do. It’s fairly rare I catch them being untruthful . . . one of them though, he blurs the line between honesty and deception every now and then. For instance, my coconut waters go missing, I find the empty containers in his room.

Me: “Stop taking my drinks.”

Him : “I didn’t.”

Me: “I found the empty cans in your room!”

Him: “Those are old.”

Me: “Old as in yesterday?”

Him: “I didn’t know they were yours.”

Me: “They are always mine.”

Him: “You didn’t say that this time.”

See, he gets me on technicalities. Empty cans from yesterday, technically old. I put them on the shelf without specifying they were mine (even though they always are) so technically, I didn’t tell him they were not for him. He is a master word weaver, if I could afford it, I would send him to law school. He would make a great lawyer.

When he was in his mid-teens I busted him mid-fib, I no longer remember what he was trying to deny, cover-up, make light of, or get out of, but what he said in a last-ditch effort to worm out of the situation was epic . . .

“It wasn’t a lie, it was just a subjective variation of the truth.”

My son, the smart, witty, and wonderful troll he is, succeeded. I lost my composure and started smiling. At least it was an almost admission he was practicing the art of deception, just a little.

Can you tell me?

Jun29

My two oldest boys, both autistic wonders, did not develop conversational speech until they were each around 5 years old. I know all kids go through the thousand questions a day stage, but with them, especially my oldest, it was more than curiosity, it was a need to fill every ounce of themselves with knowledge, facts, and understanding of everything around them . . . they have never stopped asking, searching, and learning. I doubt they ever will.

Why is blue
the color of sky?
Do you know the answer?
Do you know why?

Why is grass green
instead of yellow or pink?
Do you have any idea?
What do you think?

Why is night dark,
instead of the day?
You really must tell me,
now what do you say?

There are so many things
I just need to know.
What makes the birds sing?
What makes the trees grow?

Who made the mountains?
Who put cold in the snow?
I wish someone would tell me,
I’d sure like to know.

Do you know the answers?
Will I ever find out?
Can anyone tell me,
what life is about?

What are clouds made of
and why do birds fly?
I’m just so curious,
I wonder why?

These questions were asked
by my inquisitive son,
from the moment he woke
till his day was done.

If I said just a minute
he would ask me why,
If I said I don’t know
he’d say can’t you try?

If I said nobody knows
he’d say can’t you guess?
I tried so very hard,
I tried my very best.

He followed me here
and he followed me there,
now don’t get me wrong,
I wanted to share,

but I needed a break
for my mind was weary,
I just couldn’t take
even one more query.

I looked at my son
and I beckoned him near,
I knelt down and whispered
so soft in his ear,

My sweet little man,
Mommy’s not mad,
but be a good boy
and go ask your DAD!

Crystal R. Cook 1995

Acceptance is the key

Jun18

http://www.cafepress.com/wilsonwisdom

Labels go on soup cans, autism is a diagnosis.

Jun17

I have yet to find a downside to what so many refer to as a label. It is, in fact, a diagnosis, something many tend to overlook. My oldest son will soon be twenty-five years old, he is most likely the wisest person I will ever be blessed to have known in this life. He lives his life on the autistic spectrum; he has a thing or two to say about labels . . .

“Labels are for soup cans, diagnoses are for people, but they both serve the same purpose. They tell you what is inside and how to properly prepare it. If you have five cans on a shelf and one does not have a label, you are going to use the four cans that are labeled first because you know what they are. You know if they will need certain ingredients or special preparation. Sometimes the can missing its label never gets used. You put new cans in front of it and it remains there. When you do finally look inside to see what it is, you’ll see that it was something you really wanted, but it’s too late to use it. It will never be what it was supposed to be.

Now instead of a soup can, imagine a child who is different from the others, but no one knows why. The child gets overlooked and ignored because no one knows what to do with him, how to teach him, how to prepare him for the future because the diagnosis, or label that should tell everyone how to do these things was never given to that child. So they remain in the background becoming more and more lost. When they get older and someone comes along and decides to find out what is going on inside that child, it’s too late. The education and the therapy they needed were never given to them and they will never be what they were supposed to be.”

Wilson Cook

When my son wrote this I was in awe at his insight, he was eighteen at the time. I know if I’d been afraid of that proverbial label, he would not have become the amazing young man he is. I was told he would never talk, never learn. I listen to him speak and I read the words he writes and I know I did the right thing for him. The one little word, autistic, on a simple piece of paper changed the course of his life for the better.

Two of my children require very specific labels if they are to get the services they need and deserve, both have been blessed with the gift of a proper diagnosis. One of my children faces many, many challenges. Before I had names for those challenges he was considered a problem child. He was thought to be rude, lazy and was accused of ignoring his teachers. They told me he didn’t want to learn. The truth was, he did want to learn, they just didn’t know how to teach him.

Children do not receive the occupational therapy, speech therapy and specialized education they may need simply because we ask for it. Even if all involved agree, services are still withheld for lack of a professional diagnosis. Call it a label; call it a diagnosis, in the end all that matters is your child. You want the best for them; you want their futures to be bright and filled with possibilities.

Many children never reach their full potential because society was too afraid to label them.

Wilson Wisdom can be found at http://www.cafepress.com/wilsonwisdom

Geez, melodramatic much?

Jun17

I can be just a teeny melodramatic sometimes. Well, really only in the wee hours of the morning after I’ve tossed and turned all night. I am not one for drama. Those nights though, when the day has been rough and sleep refuses to visit, I take it out on the page. I am fairly certain if too many of my silent midnight ravings were to be set loose, I would quite possibly find myself locked securely away somewhere.

Thank goodness for the sanctuary and release of words . . . Usually, I find these bits of craziness tucked into my nightstand months after they were written, I generally have no idea what led me to write them. This one though, this was after a particularly rough IEP meeting, fighting the school, again, for the services my son required and deserved. I got them, but the battle wore me down. Everything was wearing me down.

I always feel better after I spill my lunacy upon a page, the therapeutic power of the pen is magical.

Things
in my mind
are not
fit to be
thought.

Aberrations
of normalcy,
detached
from
reality,
if there
is indeed
such a
thing.

Purging
and
pouring
into the
abyss of
what used
to be.

Filling
to the brim
with bile.

The bane
of simple
existence
too much a
burden upon
battered and
bruised
shoulders that
have carried
more than
their share
of suffering
never meant
for them.

Bones crush,
hearts break,
spirits begin
to cry out
for mercy
that will
never come.

Their thirst will
never be
quenched,
hunger will
never be
quelled,
not even
when there
is nothing
left of me
to feed upon.

Darkness
will cloak
me in
the fear
I no longer
have strength
to fight,
I no longer
care to fight.

Respite and
retreat
are what I
long for now.

No more
battle,
no more
victory,
no more
defeat.

Leave me
to my misery
until the light
beckons me
to rise
and face
the battle
once again.

Crystal R Cook

The day he was diagnosed – Autism

Jun15

I sat for what seemed like hours staring at the small stack of papers the doctor had given me. My tears had already stained many of the pages. I stared at the word Autistic, it stood out among the rest. I ran my finger along the printed word. Autism, Sensory Integration Dysfunction . . . the tears rained down.

We’d waited so long for a diagnosis, so long for someone to listen and understand. The tears I shed were not in sadness or despair, I was happy, near euphoric quite honestly, I was excited about what this long-awaited diagnosis meant for my son.

He will be 26 this year, I knew the moment our eyes first met there was something special about him. I realize all mothers could make that claim, but somehow I knew something was different. As time passed, it became more and more apparent there was more to my feeling than just a feeling. He was not meeting the milestones he should have been meeting. He was so different from other babies his age.

Twenty-plus years ago the Autistic Spectrum didn’t seem to exist. The word Autism kept coming to me, but the doctors dismissed the notion. When he was two, he was enrolled in a special needs preschool through early intervention. He was diagnosed as learning disabled with Sensory Integration Dysfunction. Later they added Pervasive Developmental Disorder – Not Otherwise Specified. He began speech and occupational therapy and I saw change and growth, but there was still something there, right beneath the surface.

He began speaking shortly before he was five years old, before that it was mostly echolalia sprinkled with random words and phrases he was learning. When he began grade school his services stopped. They said he did not have a qualifying condition to merit the services such as continued speech and occupational therapy he so badly needed. PDD-NOS was not specific enough.

He was listed as learning disabled and placed in a mainstream classroom with modified work. I watched my son slip away and I began to fight. All the while, teaching him and working with him as I always had, but I fought the school, I fought the district and finally, in the fourth grade he was placed in a special education class and he began to learn.

It wasn’t enough though. They didn’t understand him. They forced him to make eye contact he was unable to make. They forced him to suffer through an ever-changing and unpredictable schedule and punished him when he would retreat into his own little world. I once again brought up Autism. He can talk they said, he doesn’t have Autism. He is smart they said, he can’t possibly be Autistic.

My younger son was having many of the same difficulties and was beginning speech therapy. The school psychologist suggested I had Munchausen’s by proxy and urged me to seek help. I was furious. I made an appointment with yet another doctor and within a week my prayers were answered. By God’s grace we walked into the office of a young doctor who had recently attended a seminar about Autism.

He knew there was a spectrum, he new about Aspergers, he knew how to diagnose my son and he knew what we needed. In my heart I knew he was autistic, now someone else finally understood. I broke down in his office. I tried to hold it back but the flood of emotions I’d so long waited to release could not be contained. I praised the Lord right there in that office and have been praising him in thanks every day since.

With this new and proper diagnosis my son was placed in the perfect classroom setting, he was given back the therapies he needed and deserved. He began to grow and learn once again. There would be more battles with the district through the years, but I was relentless in my quest to see he had everything he needed to thrive.

I eventually fought to remove the Aspergers diagnosis in favor of Autism, technically, he fit the diagnostic criteria regarding speech development for Autism, it proved to be a magical word and the educational and therapeutic doors which had remained closed until that point, suddenly opened.

He is a wise and wonderful young man, intelligent and witty. He most definitely walks to the beat of his own drummer and he is perfect, just as I always knew he was.

The day my son was diagnosed with autism was one of the happiest days of my life. Two of my four children have autistic spectrum disorders, I have been blessed beyond measure, it is an honor to be their mother . . .

Crystal R. Cook