Tag Archive | Autism

I’ve never cared for roller coasters.

imageI wrote what will follow this when my son was fifteen, it is a snapshot of a particular day in our lives – he is now twenty-two years old. There was a time I feared we would not make it this far together, I feared I might not be enough. There were days I was certain I wasn’t. I took each moment as it came, holding on to hope for the next and praying for the strength I so desperately needed.

It was suggested he be placed in a residential treatment home after his third in-patient hospitalization at the children’s psychiatric hospital. My heart broke at the thought. My heart has felt the shattering of despair many times over the years.

He was my second child, as perfect as his brother. I knew very early on that like his big brother, he was going to need some extra care. He began early intervention services at two for developmental delays. He began speech therapy at three because he was not learning to speak. He was provided with occupational and physical therapy to help his body assimilate to his surroundings, to try to help his sensory functions work with him rather than against him.

At three he was enrolled in a special needs preschool. At five he finally began to speak. In kindergarten they diagnosed him with ADHD and OCD, and he was very much both of those things, but there was more, something yet to be named.

By second grade he could no longer deal with the constant changes and expectations of a mainstream classroom and was moved to a special day class for what they called the emotionally disturbed kids, it was right across the hall from the regular special ed classroom.

This was the year of his first hospitalization. He was diagnosed with Bipolar Disorder and Autism by sixth grade, the same year he finally stopped soiling his pants. The medications they gave him helped . . . some. Middle school regressed him, it turned his world inside out, that was the year of his second hospitalization, the next year brought a third.

Done with doing it their way, I fought until he was placed in a special needs high school, the same one his older brother already attended, there he flourished educationally, but Bipolar is an insidious parasite we had to battle each and every day. We still do.

I look back on those years and remember how dark they often were, I remember wondering if we would ever come up for air. He has worked hard, he is an unbelievable young man. He no longer cycles as manically and as rapidly as he did in his youth, but he still has his many ups and downs. His life is not easy, navigating through the world with autism can be tricky enough without your own mind turning on you periodically in the process.

He amazes me. There is so much to his story, details I wish I could forget but know I mustn’t. I have to record them, hard as I know it will be. I want to share our journey so people will see the hope and the determination that can change a life when there are those who say it cannot be done.

There is always, always . . . hope.

This morning, before the sun began to shine he told me I ruined his life, and then he said he loved me.

When I thought he had calmed I said good morning to him, he said I purposely say things just to make him feel crazy, and then he said he loved me.

After he’d eaten his breakfast he told me it was my fault he is the way he is, and then he said he loved me.

He told me he’d rather be anywhere than here, and then he said he loved me.

This morning, before my day had a chance to begin he told me he never should have been born, and then he said he loved me.

This afternoon he threw a fork at his brother and then helped him clean his room. He screamed and he yelled. He cursed and he sobbed. He raged and he rested. He threw his shoes at me and then he asked for ice cream.

He had a fit of laughter followed by a slamming door. He said he was going to ride his bike off a broken ramp down the road, it’s dangerous I say, he replies, I can do it, I won’t get hurt, nothing can hurt me. I prayed for angels to keep close watch as he walked out the door.

Tonight he hugged me, and then he said he loved me. He said his prayers and he closed his eyes. As I walked from the room he said, “Mommy, today was a good day wasn’t it? I smiled through my tears and said “Yes. Yes it was little man.”

I never know what tomorrow will bring. Some days I don’t know what the next minute will bring. My fifteen year old son is bipolar. He cycles rapidly, the roller coaster that is his life never ends, it slows every now and again, but never does it stop. I hold his hand as we ride up and down and back again. Sometimes I want off. I want to plant both feet back on the ground but I can’t let him ride alone, I won’t let him ride alone.

He has mood swings and he rages. He is happy and he is tormented. He sees things and hears things that aren’t real. When he is happy he jokes and laughs and tells me he loves me half a dozen times each hour and I feel like I am walking on air, but I don’t know if that same boy will walk through the door after school. Will he hate me? Will he hide somewhere and stick safety pins into his fingers? Will he throw things at us or will he be able to smile still? I don’t know. I never know.

He is such a great kid, so beautifully and perfectly great. He has the sweetest smile and his laughter can melt hearts. I close my eyes each night in prayer and I open them each new morn with hope. I try not to think of what the future will bring, I just want to get him safely to tomorrow. Some days are better than others.

I do what the doctors say; I try what the therapists say to try. I grow weary, I do, but one day I know I will rest, one day I know he will as well. I have hope and I have faith and I have a son I love more than anything else. He is a good boy.

An angel with a broken wing, learning how to fly . . .

Crystal R. Cook

 

He was dying . . .

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I am often asked if it’s true autistics are incapable of empathy, affection, love, compassion, etc.. I try not to let it get to me, knowing there are so many people out there who believe the myths and the misinformation regarding autism. I try to fight these notions by encouraging and educating those I can.

One of the most powerful tools I have at my disposal is experience.

This morning I spoke to my son, he was feeling sad, he and his grandma had come across a dying bird in the back yard. He posted this status update to his Facebook profile this evening ~

He was dying, my Grandma found him in the backyard, we picked him up and held him as he passed, I stroked his head making sure his final moments were of love and not of fear. We put him in a box with some tissues and some socks so he could spend his final moments in comfort, it was sad we couldn’t save him and we didn’t have him for more than a few minutes but I feel better for having been there for him. I made a difference in its life, albeit in the end of it.

Yes. Autistic people can feel empathy, deeply. They may not always be capable of expressing their feelings, every individual with autism is unique, they have strengths and weaknesses just like everyone else. There are many people not faced with the challenges my son faces who are incapable of the level of empathy my son felt today, holding that little bird. He is a good, good man.

Crystal R. Cook

Social Anxiety or Self Defense Mechanism?

My Anxiety Is Not Disordered by Cynthia Kim 

The article above provides some thought provoking insights regarding social anxiety and those on the Autistic Spectrum . . .

I found I could relate well to her assessment of certain individuals with social difficulties. If you know me, you obviously know I have social peculiarities. I don’t often care to be around people, I prefer talking via typing rather than gabbing on the phone. I don’t mind going for coffee with a friend, but I don’t particularly care to go to their barbecues, the nights out on the town, the movies, or the mall with them. I don’t know if I necessarily have social anxiety or if I am simply teetering on the edge of some misanthropic cliff, deciding whether or not to jump.

imageI find spending time with others to be draining, emotionally taxing, and generally uncomfortable. Even with people I love dearly, I need breaks. Decompression. I often feel I should say to them, “It’s not you, it’s me.”

The difficulty comes in explaining why. I just do. I am not afraid of people, well, most of them. I simply do not care for the vast majority of them. I don’t understand them. I love to watch them, study them, dissect them in my mind. I liken my people watching to the desire to take apart a clock to see how it ticks.

Social pretenses are somewhat lost on me, expected norms of interaction don’t come naturally whether it is within a group dynamic or one-on-one, I often feel a certain discomfort. I like being alone, I relish my solitude, but I also enjoy the company of loved ones, I just can’t seem to enjoy it for extended periods of time.

I am not anti-social, selectively and cautiously social is a better descriptor. There was a time I suffered through it all, when my fight or flight triggers were tripped I ignored both options and forced myself to muddle through, seeking and finding release and relief was not something I allowed myself.

Now though, I say no when I know it will all be too much. I steal away and take a few minutes to regain my center when I find myself in a situation involving others, only returning when I know I am able. I feel a certain level of comfort simply knowing I can do so, sometimes just knowing I can is enough to keep my composure.

As this blog article says, it is a self-defense mechanism for some of us. It’s a way of maintaining balance to a fragile portion of who I am. I know what anxiety is, I have social obstacles certainly, they can lead to anxiety if I do not address them, but I think the anxiety is a consequence of the social quandaries I face, not a cause . . .

Crystal R. Cook

Credit where it’s due.

* Update – The page owner responded kindly, offering to remove or give him credit. I want his words, his message out there . . . I just don’t want someone claiming them as their own. Her response left me feeling a bit better about people, I suppose part of me was expecting the resistance or rudeness I have encountered trying to remove his work from other sites, one even selling his design as their own. She was very much the opposite and I am thankful for it . . . 

My sweet friend, Kathie, sent me a link this afternoon referencing an image someone claimed to have created, a very familiar image to most anyone who knows us. It was among the first creations of what was to become Wilson Wisdom.

I realized this kid of mine had much to share with the world, a message of acceptance and understanding for the autistic community, so I started transcribing his words, sharing them wherever I could. We eventually began putting some of his insights and wisdoms on CafePress in hopes of spreading his message.

It worked. Labels Are For Soup Cans, Autism Is A Diagnosis, can be found in many places around the web, unfortunately, unless you type it into a search engine you wouldn’t know who said it. You can enter Wilson Wisdom or the Qwiet Muse with the word autism and you’ll find it though.

Hindsight is 20/20, cliché, but factual. We didn’t put his name, or Wilson Wisdom on some of those first little tidbits we shared with the world. Now, sadly, I have seen several used on websites, even some used for profit, without giving my son the credit he so very much deserves.

People who claim ownership for something clearly not their own should be ashamed . . . It’s sad, but an unfortunate reality.

At least we know his words are out there, hopefully touching and changing hearts and lives.

I shared the following in a previous blog post, I feel compelled to share his analogy once again.

Wilson Wisdom

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

Here we go.

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 . . .

Can you tell me?

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.

So many questions

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

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http://www.cafepress.com/wilsonwisdom

Labels go on soup cans, autism is a diagnosis.

image

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

The day he was diagnosed – Autism

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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

They said . . .

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When they told me
he would never talk,
I taught him to sing.

I mimicked his little sounds
until he began to mimic mine.

When they told me
he may never walk,
I taught him to run.

I put his little hands in mine
and helped guide his feet
toward our goal.

I fell to my hands and knees
and raced along
the floor by his side.

When they said
he would not read,
I began showing him words
and teaching him sounds.

When they said
he would not write,
I gave him a crayon
and said you can,
and he became a poet.

When they said
he would live
in his own world
I opened the doors to mine
and waited for him to enter.

Now when they say things
I raise my voice to the heavens.

God hears me
and gives me strength
to help him overcome
the limitations
they say await him.

Crystal R. Cook