Autism – Unexpected Milestone

Aug8

Disabilities do not diminish the capacity to love or be loved. I often think those who face the challenges that come with disabilities, can have a greater understanding of love and acceptance than those without them. Perhaps we are the disabled when it comes to matters of the heart . . .

This particular shoebox memory was written late into the night following an unexpected milestone in my son’s life.

He is a good man; he will always be a good man. I can see that so very clearly. His disabilities have become his abilities. They have helped form this perfection I see before me. I thank God for him. I can’t help wishing I could hold on to him forever, but now I think I can let go just a little.

I never doubted this day would come, but I wasn’t expecting it just yet. He lives in an autistic world of his own, right along the borders of mine. The world expects a social reciprocity he’s not yet able to fully give, the world expects certain behaviors and conformity he may never be able to grasp. It’s a world he is slowly beginning to explore.

When the time came, he wasn’t the nervous one, that was me. She wasn’t the nervous one either, that was her mother. He waited patiently while her mother unloaded the wheelchair and helped her buckle in. He noticed she hadn’t a jacket and made certain to let her mother know if she caught a chill he would gladly give her his.

We may have embarrassed them just a bit by taking the picture; you would have thought it was a prom instead of a date at the mall. Neither of them will ever go to a prom though, and this was not simply their first date together, it was the first date for both of them.

He is eighteen, she is sixteen I believe, I was so excited I neglected to ask. I had to fight back tears as I watched them reach the top of ramp and disappear into the mall. They were off to see a movie and have a bite to eat. They planned to take a picture in the photo booth. I wondered how they would work it out, her strapped in a wheelchair and he a bit on the awkward and clumsy side now and then. I prayed they would have fun. I prayed they would be safe.

I worried they would be treated unkindly by the cool kids we passed by as we left. He is very much the target on his own and I’m certain she’s had her fair share of the ugliness this world has to offer. It was my hope the two together would remove the proverbial target which tempts people to shoot nasty things their way.

It was a month to the day they first met. Both students in a program to help special needs kids . . . my apologies, young adults, find jobs and gain work experience. Life experience really. When she wheeled her way into the room the only one to make eye contact with her was the one boy who rarely makes eye contact with anyone My boy. He was seated at the end of the first row; she maneuvered her chair next to him, the best spot in the house.

He smiled at her, I’m not sure if she smiled back, I couldn’t see. She seemed to look around, as if trying to catch someone’s attention, perhaps simply to say hello. Most pretended they didn’t see, some just obviously ignored her. He noticed. He waited until she looked his way again and told her he thought her wheelchair was nice. I’m sure she smiled because I saw a smile light itself upon his face.

They began to talk, listening when it was time to listen, talking when it was time to talk. He was called to the front of the room to pick his job; he carefully maneuvered himself around her chair and lumbered up to the front of the room. He could hardly contain his excitement; he received the job he’d so badly wanted. He returned to his seat with twinkling eyes. Literally twinkling. She said she would like to work there too, he suggested she ask if there were any other positions available. She nodded her head and they said goodbye. “It was nice to meet you, maybe I’ll see you again sometime.” he said. She nodded, this time I did see her smile.

It was a toy store, the job he chose. He’d been working for three weeks when they met again. She’d requested a position at the toy store as he’d suggested. Neither knew they worked together until she missed a day of work and had to make it up with a different shift, his shift.

He wasn’t sure at first who asked who out; he later said he remembered it was she who suggested doing something together when the weekend came. He came home from work that evening and told me something strange had happened. I was almost alarmed, but by the look on his face the feeling turned quickly to curiosity. He said he met someone at work and, well, they sort of had a date.

I was more than a bit taken aback. Granted, he was eighteen years old, but I’d only recently begun processing the many emotions accompanying the achievements in life he’d recently made. He’d begun to ride the city bus on his own and was a working man. Now, he tells me he has a date. I fought off a fit of schoolgirl giggles and mommy tears. I managed to hold it together enough to ask what they had planned.

They’d decided to take a photo in the photo booth at the mall. I asked if they talked about doing anything else . . . nope. Just the photo booth. Such innocence is a welcome respite from the real world. He said goodnight like it was any other night and went off to bed, my tears fell and the giggles escaped before the door clicked shut.

Before the end of the week, after a couple of phone calls and a few well placed suggestions, a movie and a bite to eat was decided on. They would visit shops in the mall and talk. Saturday came too quickly for me. I hadn’t realized he was already dressed for his night out when he came to me, I told him to go get changed for his date. He didn’t quite understand the importance of slightly more polished attire. We settled on a pair of nice, muted black and gray cargo pants and a black tee with a dragon on it, his favorite. He combed his thick, long hair back into a ponytail and sprayed on his best smelling deodorant. I even got him to brush his teeth. He decided to forgo the shave; we’re still working on that one.

I imagine it may be hard for others to imagine the importance of these seemingly ordinary and perhaps even mundane moments, but to me they were anything but ordinary and far from mundane. There was a time I wondered if he would ever have a friend, and here he was readying for his first date.

The time to go was drawing closer with each beat of my heart. I saw the first glimpse of nerves showing in his eyes. He assured me he was fine. We arrived at the mall just as her mother was preparing the wheelchair he’d complimented his date on only a month before.

Her mother had the same look in her eyes I know I must have had in mine. I imagine she wondered if this day would come for her daughter just as I wondered if it would for my son. I was so lost in the moment I forgot her name as soon as she introduced herself. We talked for a time after they left us to ourselves and our emotions. It was a relief to see she felt as I did. She asked me about him, I asked her about her daughter. I felt comfort seeing the small tears forming at the corners of her eyes, I wasn’t alone.

I spent the next hours talking to my husband about how surreal the whole thing was. If I wasn’t saying, “I can’t believe he is on a date right now”, he was saying it. It consumed our thoughts and our conversation. We were already back at the mall when he called at nine o’clock. “The date is over.” he said. As we pulled up to he curbside, her mom was already helping her into the car; we listened as our son told us of their evening while she carefully placed the pieces of the chair into the trunk like she’s surely done a million times before. Somehow, I don’t think she usually did this with such a soft smile on her face.

He told us the movie was great, he said he had a hard time holding her hand like she wanted, not because of the chair though; he said it just doesn’t seem like a natural thing to do unless you are sitting down, maybe, he added. I heard her giggle from the car. He pulled out the new wallet he bought and proudly showed me each feature; the next thing from the bag was a cap gun and little plastic rounds. He’s been waiting for years to get one.

Lastly, he showed us the photo booth pictures. Four in all. He showed us which one she liked best even though her hair was back in a braid and she wasn’t happy with the way she looked. He said he thought she looked just fine though, another giggle floated from the open window of the car. I couldn’t help but imagine how he helped her from the chair to the booth and back. He said, “Well, goodnight.” and began walking from the car. I carefully suggested he say goodbye to his date before making his exit.

He went to the window, said goodnight and turned to go. Another giggle is all I heard after that. We said our goodbyes to her mother; I knew she was anxious to talk to her little girl about her first date. We walked slowly back to our own car. Further details were few, I took what I could get, once again fighting off tears and the urge to giggle just a little.

He said they’d had fun, he said they were quite opposite. He didn’t like the stores she wanted to visit and she didn’t like the ones he wanted to visit. He didn’t understand how she could ask him to leave a store he enjoyed and then ask him where he wanted to go next. He said he told her the night was about her and what she wanted, so he found himself in the most girly of shops.

He said they have plans for another date and they will share their dinner break at work on Monday. I don’t know if he understands the whole concept of dating. He has referred to her as his girlfriend since she first asked him to go out. I have fear for him and I have hope for him. Such hope. I don’t know what this milestone is like for other parents, I somehow think it carries different emotions for them. Of course, I’ve no way of knowing.

I found myself staring at him this morning. I couldn’t take my eyes off him. I saw my baby and I saw the man he has become. I think part of me wanted to feel a little sad, but I’m not sad. I feel something I haven’t yet found a name for. I am so proud of him. He was a gentleman, just as he has always been. He is a good man; he will always be a good man. I can see that so very clearly. His disabilities have become his abilities. They have helped form this perfection I see before me. I thank God for him. I can’t help but wish I could hold on to him forever, but now I think I’ll let go just a little . . .

When I pulled this from the shoebox tonight, it brought tears to my eyes. Seven years have passed since his first date, there has yet to be a second. They were the perfect couple to share this experience, the rest requires more than either of them were able to understand. My son still says he is unsure if he will ever understand women, I assured him he never would. She was demanding and required more social interaction than he was able to give. When he tried to explain this to her, she called him names and threatened to run him over with her wheelchair.

Regardless of how the story ended, this was a monumental milestone I will never forget.

Crystal R. Cook

Is it really the least restrictive environment? Special education vs Mainstream

Aug8

*The following is based on personal experience and observation both with my own children and those I have advocated for in the past. I realize there are indeed success stories involving a smooth and beneficial transition from a special education setting to a general education one. Unfortunately, there are many more examples of the system failing.

The methodology behind mainstreaming special needs students into the general education classroom is too often poorly thought out and implemented. It takes too broad of an approach to the special educational needs of many students, and in doing so, only serves to hinder, not help.

Special education was created for a reason. For a population of students with different needs than many of their peers, different abilities which sometimes require a separate and unique forum in which they can learn, an environment better suited to meet their needs. The school system has been caught up in a whirlwind of state standards and testing, coupled with the need to be politically correct, it spells disaster for many of our children.

Over the years I have seen many school districts systematically take away the services our children need and are entitled to. Parents have to fight and go through due process hearings and mediation to get their children the educational services they are by law entitled to receive. The need for socialization has replaced the need for academic achievement. There are many ways to find a social balance between the mainstream and special education programs.

The term least restrictive environment is thrown around quite liberally to loosely justify taking aspects of special education away. The least restrictive environment is supposed to be just that, an environment in which a students social, emotional and educational needs are met without depriving them or restricting them from growth and development at their own pace.

In reality, what many educators are deeming to be the least restrictive environment for a learning disabled or mentally challenged student is, in fact, often the most restrictive and detrimental environment they could be placed in. The very best general education teacher will not be able to meet the needs of a student or students who require a different approach, one they most likely haven’t received the training required to teach. This only leads to frustration for the teacher as well as her students.

Many classrooms themselves are simply too overwhelming for the special needs student. The room may be too colorful, too noisy or have too much movement. The fluorescent lighting itself can cause havoc for a student with sensory integration disorder. 1 in 68 children have been diagnosed with an autistic spectrum disorder. Just those few things I’ve mentioned can be too much for them to handle.

If a students learning challenges are mild enough to be placed in the general education setting and they are thriving, then they are in the right place. If they are not thriving however, if they are overwhelmed and cannot keep up, or they are ostracized because of their differences, then they should not be forced to endure it for the sake of satisfying those who have jumped up on a soapbox of denial. We cannot make them fit in or adjust. The misguided notion which says we are preparing them for the real world by trying to assimilate them into a society that may or may not accept them, only proves to make the transition even more difficult for them.

Many mainstreamed children with special needs leave school feeling ashamed of who they are, feeling they were not good enough. How is that going to help them in this real world everyone keeps talking about? More and more students with special needs are failing to reach graduation, they are held back or worse, many drop out of school entirely. They are not being given the opportunity to learn many of the things they could be, and should be learning in a proper educational setting.

I find it odd that gifted children are given their very own society. There are advanced placement classes specifically for those with academic prowess which surpasses their peers. Why are they there? Because they learn things differently than the other students. Because the regular education setting did not provide them with enough of what they needed to maintain and challenge them. Why do we justify the segregation of these children while forcing others to remain in settings not suited for what is best for them?

Special education should be special education, separate and different from the mainstream, but there should be a bridge for those who are able and ready to cross over it.

As a mother of four children with varying degrees of special needs I have been involved in this debate for years. Since my oldest was two and half years old to be precise. He is now nearing 25 years old. I was trapped on the special education roller coaster for many years, and I must say, I did not enjoy the ride.

I think it best if the last word comes from someone other than myself, I would like to share with you the opinion of a brilliant, young autistic boy . . .

“It is not easy to be placed in a classroom full of kids that are not nice to you, who are sometimes actually mean. They don’t do it when the teachers can see or hear them and for some reason they are believed when they deny the deed. It is not easy to learn from a teacher who does not know how I learn and does not have the time to learn how to teach me. It is not easy to be in a classroom that is filled with colors and movement and noise and bright lights and constant changes.

A classroom best suited for me and many other students is one that is calming. One that does not display too many decorations and the lights don’t hurt my eyes or my ears. The fluorescent lighting in most classrooms make sounds that not everyone can hear. I need a classroom that has stability and structure and I need a teacher that knows the unique way I learn and has the time and training to teach me. I need a teacher that will tell me if there is going to be a change like a substitute or if the furniture will be arranged differently. These things are more important than being put in a classroom that I shouldn’t be in because someone who does not know what it is like to live with these things says I should be.

I resent the idea that these experts are trying to integrate us in with normal kids. Neurotypical does not mean normal. There is no such thing as normal. I do not truly care about what an expert thinks is best for me, I care about what really is best for me and for others just like me. I was in a regular education class and it was like daily torture. Thankfully my mother saw very quickly that something needed to be changed and starting fighting for those changes. I was able to go to a school with teachers who knew how to teach me, that were trained in the different abilities of their students.

There is room for socialization outside of school if we want it. That is something experts do not seem to understand. We DON’T always want it. You look at us walking alone on the playground talking to ourselves or stimming, you see us eating alone at lunch and think that we must be sad and lonely. Don’t you see that it is a choice for many of us? The schools need to stop taking away the freedom of kids like me. I will graduate from high school this year and I plan on continuing to change the way the special education system is structured because it is flawed. Thank you for your time.”

Wilson Cook

My son was 17 years old when he wrote this. He was completely removed from mainstream education in the 9th grade, he attended a special needs charter school through graduation. I attribute much of the success we have had to those special education teachers who took the time to really help him. My son was non-verbal as a child. I was told he would never learn and now he is the one teaching the lessons.

Crystal R. Cook

Sensory Overload

Aug3

I see sounds
and I taste colors
I feel words
like grass beneath
bare feet
I feel your touch
beneath my skin
Always aware of
everything round me
Unheard noises
reverberate inside my head
I feel them in my bones
they flow through my veins
I sense the movement
of air as it surrounds me
It never quiets
never stills
Sometimes
it is all
too much

Today is too much

Crystal R. Cook

Did you know you can change the world?

Aug3

The power to give and help and bring change is within us all. I am not unique; I try to do what I can when I can as do thousands of others everyday. I’ve seen people reach out, perhaps without even realizing they are adding value to humanity. The man who helps an elderly woman empty her groceries in the checkout line at the market has added value to humanity. The woman who extends her hand in friendship to someone without a friend has added value to humanity.

When I was a small child my mother would tell me I was going to make the world a better place and I believed her because she was one who made the world a better place. I learned well watching my mother as I grew. I learned to value others, to share what I could and do no harm. She was selfless, not a martyr by any means, but there were many times she went without for the sake of another. I remember thinking she was an angel. She hid her wings well.

She taught me to value life and love and freedom. She taught me to share and care and have faith. She looked me in my eyes and said she believed in me. She really did think I would make the world a better place and I have tried every day since to do just that. The values and the morals she taught me have been with me all my life through, I’ve always tried to be true to them, in doing so I was being true to myself and honoring my mother. I knew I needed to be an example, I knew if I wanted others to learn the lessons my mother had gifted me with, I had to do more than simply live a good life.

I was open with my faith, never afraid to be witness through both word and deed. Actions often speak louder than words and I wanted to be heard. As the years passed I did what I could to help others, but it wasn’t until I had a child of my own did I truly understand everything my mother had said to me. When I looked at him, I simply knew he would one day change the world. I raised him and taught him as my mother had taught me and he grew to be a good man. I saw the same thing in the eyes of each of my children. They are my greatest contributions to humanity. They showed me a world within our world. I never knew such a place existed until I saw it in their eyes. Two of my sons are challenged, bright and wonderful, but challenged with ups and downs of Autism and Bipolar.

I was told they would never do the things they can do. They have surpassed expectations once had of them and overcome limitations once placed on them. Together we use what we have learned to help others. We volunteer our time and our hearts to not only the autistic community, but the world. Eradicating ignorance is their platform. I spend my days educating, helping and healing parents who are where I once was. They spend time mentoring their children, showing them the potential they have, teaching them to accept themselves and be strong and proud of who they are.

I share all I have learned while learning more still as I continue along this amazing journey. Sometimes I admit to tiring of it all. Answering questions and trying to undo damage and misunderstanding caused by an uniformed world isn’t always easy. My heart has hurt and my tears have fallen, just when I think I cannot make a difference, when that little voice whispers into my heart telling me I’m wasting my time, telling me I am fooling myself to think any of it matters I’ll open my mail to a heartfelt thank you from someone my words have touched.

There was a day I almost quit; divine intervention had other plans for me. I received a letter from a mother I’d helped through a difficult time in her life, in the letter she thanked me and thanked my son. She said everything had changed since we’d last spoken. They found what we had found and she was thanking me for it. In closing, she wrote the words that have kept me going during those moments I’ve found myself wanting to quit. At the bottom of the page it was written, “You and your son have changed our entire world and made it a better place,” I held the note and heard the words my mother once spoke echo in my heart, “You are going to make the world a better place.”

I know this was only one person but if I have helped even one then I have done something worthy in this life. I will never stop doing what I do as long as I am able. I give my time, my heart and my voice. I don’t ask for payment, the thanks and the changes I see are payment enough. Knowing my children are learning how to give of themselves through the example I set for them, the same one my own mother set for me makes me rich in comparison to many. Any gifts God blessed me with I try to use to his glory. My words I gladly give, my time I gladly share, and if there is anything within my power I can do for another I will try.

It is rather odd to say I believe I have added something of value to humanity, but it is what I have spent my life trying to do. I don’t feel deserving of recognition, I don’t feel as though I’ve done anything better or more than any other, but I must admit I feel a satisfying peace within me knowing I have done all I could do in this life to better the lives of those around me.

It doesn’t take an effort of great magnitude to do something of great magnitude. Something seemingly small to us may be of grand importance to another. Donating clothing and blankets, volunteering in the hospitals and shelters, cleaning messes along the walk left by others . . . all these things add immense value to humanity. Everything we do accumulates and becomes a part of our life legacy. I want to look back when I reach the end of my life’s road and know I accomplished something. I want to feel pride in what I have done instead of feeling sorrow for things I could have done and did not.

The value I’ve contributed to humanity will be my crowning joy on that great someday when I stand before the Lord, knowing I am deserving of being in his presence. The value I’ve added to humanity is the contribution I’ve made to the future in the lives of my children. It is my hope they will take all I have tried to teach them and carry it on, teaching others as they themselves give value to humanity.

Perhaps there is more I could do, more I should do, I know I do all I am able. I know I’ll not stop until I must. My mother told me I was going to make the world a better place. My contribution may be a small one in the grand scheme of all things, but it is a contribution nonetheless. Every one of us has immeasurable value to add to humanity, when we think of all just one person can add it is inspiring, when we think of all we can add together if we try it is miraculous. I believe we all have the power to make the world a better place.

Tomorrow I will rise and try to do something good, I will make my contribution and rest my head on my pillow when the night comes and know I tried. I want to look back upon my yesterdays and know they were not wasted. I have been blessed by the many things of value others have given to better humanity; I simply want to give back. My mother is wise and she is wonderful and I will forever be grateful for the example she set for me. My children and their children will be better for it.

I offer my heart, my knowledge, my faith, friendship and understanding. I offer my compassion, my devotion, courage, empathy and my time. I offer myself. My contribution, is teaching my children to value and respect life, to care for the earth and show kindness in all they do.

My contribution to humanity is simply contributing. There is value in trying to do something good to better humanity.

Crystal R. Cook

He is changing the world every day.

Aug1

On page 26 in the book Chicken Soup for the Preteen Soul (Published in 2000), you will find a little piece of my son’s heart. It is his perfect ending to the statement “If I could change the world for the better I would . . . “

He found the call for submissions on a website and sent his thoughts in. His quote was chosen for inclusion and he received an autographed copy of the book and a check for twenty dollars, he was on top of the world, published and rich at 9 years old.

So, on page 26, right below Justin Timberlake and a little girl named Scarlett, you will find these words describing how my son would change the world for the better . . .

“Help people realize that people like me who learn differently and do things differently than them are still really the same underneath it all. We want to be liked and smiled at.

Wilson Cook, nine

This was the same year he received his official diagnosis of Autism. I hope his wish for a better world comes true.

Wilson Wisdom – Autism, spoken VS written word, & anxiety.

Jul29

When Autistics speak, we need to listen . . .

Being autistic, it is sometimes hard for me to put my feelings into words using my voice, but with the written word I can say things much easier since I can see what I say and correct anything that I misspoke before anyone else can see it. Sometimes things that are bothering me I won’t talk about because I can’t put it into spoken words, if I try to, my point either comes off as not as I intended or it is misinterpreted because of the words I used.

To put it in a way easier to understand, when I speak it’s like a game of Scrabble, but instead of letter tiles I have word tiles, if some of the words I need are not available and I have to use similar words to get my point across it can lead to confusion. When I write I have access to all the tiles at once and it’s simple for my thoughts to come out, I still make mistakes, but not as much.

If I feel anxious I tend to deal with it on my own and tell no one since it is even harder to say what I need and I only bring it up when it is either resolved or when I really can’t do it on my own and I need someone else to help me.

When it comes to autism, the people around those with autism need to be vigilant about the mental state of the autistic person. With me, I can handle most things on my own and have an understanding of how my anxiety works (Some forms of my own anxiety require me to let it run its course when none of the other methods I have learned to use work or make it worse) but others may not have this understanding and cannot get through without help, mine comes from years of having to deal with it and with the help of my Mom (Crystal Cook) teaching me methods and helping me through them.

Some younger autistics have not yet learned to put such information to use so it is up to those around them to notice these moments of anxiety and help them through it, if you’re close to someone with autism I am sure you know the signs, I would list some, but not everyones signals are the same. For me personally it is just an anxious feeling or the feeling of dread or just full on confusion, each one has its own type of “Cure” and sometimes I just have to wait it out. If a person hasn’t figured them out on their own it is up to you to teach them to identify and conquer them.

For the past week I have had an anxious feeling that have been growing little by little each day. I believe it is cause by a mixture of changes happening around me and some just regular random anxiety that comes with the disorder I have. I have done every one of my usual “Cures” (Including talking to my Mom) and none of them have worked, that leaves letting it continue running its course and try again later if it continues to long.

Remember what I have said about keeping an eye on an Autistics anxiety tells, if you don’t help them discover them and learn how to conquer them they might never learn on their own.

Wilson Cook

I’ve never cared for roller coasters.

Jul24

I 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 . . .

Jul19

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?

Jul18

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.

I 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.

Jul11

* 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.

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