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He was nine when he wrote it – This is how autism sometimes speaks.

 

Compassion comes in many forms, I think on this day, my son’s capacity for compassion and empathy and understanding of a world we so often take for granted shone bright in its innocence and purity . . .

imageThere are those who say autistic people do not have the capability to feel empathy or compassion or relate to the emotional world around them. I know this to be untrue, they may express these feelings differently than others, but they are more than capable of feeling them.

When my children were young we spent many afternoons in the park. Sometimes, when I drive past it, I can almost see them playing there, I hear their innocent laughter between the beats of my heart. One of these outings stands out in my memory, it was a beautiful and brisk autumn day, the perfect kind of day for something special.

Two of my four children are autistic, one is quite social and loves to run and play, the other is very much the opposite. He prefers to be still, watching, listening, taking in everything around him. While his brothers and sister quickly ran out into the open field to play, he spent the afternoon with his arms wrapped around a tree, he wrote this poem when he got home, he was nine years old.

VOICES OF NATURE

The wind chills me
as I walk the path
through the park

I hear a small voice
that is heard with my heart
It says “come to me”

I search for the source
of the mystical voice
there is only a single tree
ancient and weathered
roots exposed to the sun and the rain

The voice draws me nearer
and I see tiny little ants
crawling about
in search of food

I knew it was not them
that called out to me

I look to the top of the tree
the bare branches sadden me
I touch the tree
and feel enormous pain

Somehow the tree had spoken to me
maybe it is my gift

I sit next to the giant trunk
and speak to it for a while
it forgets its pain

I wrap my arms around it
as far as I can reach
I press my forehead
against the bumpy surface
and I think it’s thoughts
and I feel all that it feels
and it is thankful

Wilson Cook

1000 Voices Speak for Compassion

My Badge of Honor – Still Wearing It With Pride

Badge of honor . . .

 

I am at that stage in parenting when most, or at least many, mothers are trying to decide what to do with all the space in their emptying nests. Maybe they’re gathering stacks of books they’ve put off reading, turning a now empty bedroom into a home gym, or my personal dream, a library. Maybe they’re thinking about taking up knitting or skydiving or writing the novel they’ve always wanted to write . . . I don’t know, my nest is still quite full and my little birdies are currently inhabiting any spaces that could one day become my library.

Three of my offspring are now what the world technically refer to as adults, and the youngest is mere months away from the legality of this reality, but as of yet, only one of them have spread their wings and flown away. I’m not ashamed to say I am content and okay with my nest being slightly more crowded than perhaps it should be at this point, but still, I very much want to see the beauty of them soaring one day.

It’s sometimes hard to believe I have children old enough to be considered all grown up. I remember when I thought if I heard *Mommy* being shouted throughout the house, the store, or the playground one more time I was going to change my name. I remember so clearly . . . mostly because it was yesterday. Literally. With the exception of the playground, it was in actuality, yesterday. You should see the looks I sometimes command at the supermarket.

Yep, my grown up kiddos still call me Mommy. They are bigger than me, bigger than their father, and they call us Mommy and Daddy. They likely always will and to be honest, I love that. I love it so much. I wear that name like a badge of honor.

Sure, we get odd glances and some behind the back comments every now and then, but it never bothers me, it never has. Maybe if people knew why these giant creatures we created call us mommy and daddy they wouldn’t snicker so much, maybe they would think it’s as precious as I do.

The oldest two of my former house trolls are bright, brilliant, and beautiful young men who came into this world with a few challenges. Those challenges have gone by many names over the years: developmental delays, speech delay, sensory integration dysfunction, ADD, learning disabled, PDD, OCD, ODD — the list is long. They were both eventually and properly diagnosed with autism and many of the extras which often accompany it. The younger of the two has an additional diagnosis of bipolar just for fun. It’s not really that fun.

Those boys are my heroes, without a doubt, truer than true heroes in my book. I used to think I would one day have children and I would teach them all about life and love, but it turned out they were the ones who taught me about those things. My children, all of them, have taught me more than I ever imagined possible.

I was abundantly blessed to have these amazing children who have grown into these amazing people, who strangely to some, still call me Mommy. You see, speech came late for those first two boys of mine, and when it came, they called me Mommy and they have called me Mommy every day since. To them, it is my name, it is who they first came to understand I was and they saw and still see no reason to change that. Their younger sister and brother followed their lead and I am blessed with the honor of being called Mommy.

While I do long for that someday library, I am happily okay with waiting for their wings to grow strong enough to carry them.

Crystal R. Cook

Product Promises, Broken iPad & a Blessing

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My dear friend Cindie recently had what could have been a terrible, awful, and heartbreaking incident happen with her sons iPad mini, BUT, Walmart did something wonderful, something another company could have easily, and perhaps should have done themselves.

Cindie’s son is an adorable 9-year-old boy who dropped his iPad, breaking it. Now I know some of you might be thinking, why does a 9-year-old have his own iPad? Or something along those lines; the difference between Cindie’s son and an arguably overindulged 9-year-old with an expensive piece of technology is this, he is autistic.

This particular little boy uses his iPad to communicate, it is his voice. Like any responsible parent, Cindie did her best to protect her sons ability to communicate with the world. She purchased a protective case she was led to believe was pretty much indestructible.

Problem is, the case itself does fulfill the indestructible portion of its claims, but not so much the protective part. It fell short in its ability to protect what it was meant to protect, leaving Cindie and her son with an intact case on a broken iPad.

I realize we can’t blame a product for its hype or effectiveness, well, we can, but reality is, things happen and sometimes we just have to suck it up. I understand Cindie’s frustration with the product in question, I also understand that companies do not have to go out of their way to help us out when something goes wrong, but they can. Some do. Especially in circumstances like the one I’m sharing.

Thankfully, a company did step up, it wasn’t the one she’d expected.

The following is the message which prompted me add my own two cents worth of words . . .

PLEASE SHARE! From a note I wrote . . . I never write things, but I feel very strongly about this. 

iPad smashed — The Good, the Bad, and the Ugly 

The Bad — My 9 year old son dropped and shattered his iPad mini at school. It had a Griffin Survivor case on it. My husband called Griifin and talked to customer service, and to their supervisor and to their supervisor (you get the picture). Well there is nothing they can do for us “But if the case is broken we will replace it.” 

WHAT!!!! The case is not broken. The iPad it was supposed to protect is. http://store.griffintechnology.com/survivor-case-for-ipad-m… 

The Good — Our local Walmart in Coventry, RI, upon hearing that R needed a new voice, has donated one to him! Yay Walmart! http://www.walmart.com/store/2283/

The Ugly —I’m feeling really ugly, mad, and hateful towards Griffin Technologies. Military tested! And it broke! Now I totally support our military, but, yeah, ummm Griffin you dropped the ball. How’s about Autism Tested?

That last bit there is a pretty good idea, I propose ALL products be autism tested as the new standard of durability!

Kudos to Walmart for extending such compassion.

I’d love to hear your suggestions, experiences, and advice in regard to what you feel is the best protective cases on the market, I’m sure Cindie would as well . . .

Crystal R. Cook

In regard to functioning labels – Autism

Autism

Functioning Labels & Autism

When we use functioning labels, we’re telling the world a half truth, and our children are often held to certain standards they cannot always rise to meet, or held down by expectations set too low.

I used to use the term high functioning when talking to people about my boys, both at varying degrees on the autism spectrum, until I slowly began to realize I was setting them up for certain failures and disappointments in doing so.

High functioning does not mean their lives aren’t difficult and confusing in many ways. It does not mean they do not struggle, in fact, it minimizes their struggle.

The term low functioning in regard to others on the spectrum can lead people to expect less than they should from them. The term low functioning does not reflect how capable someone may be, in fact, it minimizes their capabilities.

In my mind, I was trying, in the simplest terms, to tell people my children had many abilities some on the spectrum may not. They speak, though neither developed spontaneous, conversational speech until they were around five years old.

They are able to express themselves beautifully and articulately, but it took a lot of hard work before they could, and while they still struggle at times with the semantics and pragmatics of speech, they have a voice.

They struggle with sensory issues and learning deficits, they battle anxieties and obsessive thought patterns and routines. Years of special education, speech, occupational, and physical therapy have filled in many of the gaps and given them tools to self regulate and maintain what they have learned. Most of the time.

While they can remember complex ideas they often need reminders and help to accomplish the simplest of tasks. Some days they are high functioning. Some days they are in the middle, and some days they are low.

Autism is a spectrum in the broadest sense, encompassing all levels of functionality for every individual diagnosed, there is a vast spectrum within each one of them.

My boys are now adults, amazing, wonderful, young men with many gifts and abilities, but they are not yet capable of being on their own. They may never be fully able to without some sort of assistance, maybe they will. I do know that when they spread their wings I am not going to clip them by giving them a label that tells the world they can soar when they are just learning how to fly . . .

Crystal R. Cook

You Ate My Garlic Bread

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You ate my garlic bread. I was saving it, for me . . . and you ate it. Not cool. I was actually looking forward to that little piece of garlic bread. I placed it in a plastic bag and hid it beneath the zucchini and the mushrooms in the bottom drawer of the fridge.

I know you didn’t just stumble upon it while searching for baby carrots to snack on, you opened the drawer looking for that garlic bread like a sneaky thief in the middle of the night. That’s just rude. It reminds me of the time my slice of pizza disappeared, and the time that corner piece of cornbread I squirreled away mysteriously vanished.

I am fully aware the cornbread incident was two years ago, but it wasn’t the first missing morsel of yumminess you’ve stolen from me and it certainly wasn’t the last, I have a list. A long list.

It’s not like I’ll starve to death because of what you’ve done, but it bothers me, a lot. It hurts my feelings, pisses me off, annoys me, and disappoints me. I wish I knew how to make you stop.

The thing is, when you take something you know is not yours, even something as insignificant as a tiny piece of garlic bread, it’s an awful thing. It’s sneaking, it’s stealing . . . and then when you deny your misdeed it’s lying. Three things I thought I taught you not to do, three things you only seem to do to me.

My sweet boy, you are a man now, and your choices are your own, I need you to understand this is about so much more than stolen garlic bread.

I really did want that garlic bread.

Listening With Your Heart – Autism Sings

Listening with your heart - Crystal R. Cook

He walks to the beat
of his own little drum,
the rhythm sometimes
gathers a crowd.
Some people sing along,
others simply
walk away.
There are those
who scoff,
they can’t hear
the sweet music.
Sad souls
listening
without
hearing.

My heart . . . it dances.

Crystal R. Cook

Reality Check

Going through the shoeboxes again . . . I distinctly remember the day I wrote this. I was tired. So, so, very tired. The week had been a whirlwind of medical appointments, two IEP meetings, my husband was out of town, my blood sugars were high, and my energy was low.

Autism was in charge and it’s sidekick Bipolar was running amuck. I was outnumbered and out of my mind – Thankfully, a little reality check pulled me back.

Seems like only yesterday sometimes

Seems like only yesterday sometimes

I remember reading something once about about people with unsinkable souls, I believe I am an unsinkable soul. I simply must be. If I weren’t, I certainly would have drowned in whatever sea of muck souls sometimes sink into long ago. I’ve felt myself being pulled under a few times, but I always manage to pull myself up for air. Sometimes, I even manage to find dry land.

I recall one particular night when my toes were just about to reach the bottom of this proverbial, soul-sinking pit, and I was ready to throw in the towel, search out a nice little cave and see if it was possible for a human to hibernate. Ultimately, I decided it sounded like too much work and made one last attempt to free my sinking soul from the murky depths by reaching for my pen.

Miraculously, I managed to pull myself up and I began to write. I was going to pour my heart out on the page. It was going to be a gloomy piece, a somber and sad work of words. It’s often said writing is a healing art. I’ve never doubted it to be anything but true, but I may have taken it for granted now and then.

On this night, as my tears fell to the yellow pad beneath my hand, transforming my words into water-color patches of blue, I was reminded of the awesome power writing holds. I did not pen a masterpiece that night. I did not create an epic tapestry of words that would go down in poetic history. It was not my best writing, nor was it the worst.

It was also not what I thought it would be when I began. It turned out to be something that dried my tears, made my husband laugh, and my children smile. Writing is a healing art.

Peace and quiet . . . Solitude and rest,
someone else to cook the meals, someone else to clean this mess.
Someone else to do the laundry and mediate the fights,
someone else to sweep and dust and get up and down all night.

Oh, for just one day, I need a little break,
I need someone to give, instead of take, take, take.
Let me have a little nap, for just an hour or two,
a rejuvenating rest sounds like a wonderful thing to do.

I’d love to take a shower till the hot water is all gone,
I simply can’t imagine staying in there for that long.
I could actually take the time, to shave my legs tonight,
and I’d love to go to bed sometime before midnight.

I could paint my nails or polish up my toes,
I could curl up on the couch and catch up on some shows.
I could read a book and maybe have a cup of tea.
I’m not trying to be selfish, I just need some time for me.

REALITY CHECK

The kids say they are starving, they are on the brink of death,
you can’t make it down the hall unless you watch your step.
The dryer keeps on buzzing and someone just got punched,
I don’t think I’ll get to take that nap, but that is just a hunch.

I’m sure I’ll get to shower, sometime late tonight,
when the kids have given in to the sleep they like to fight.
The hot water will be gone between dear hubby and the dishes,
so I’ll keep that dream close to heart with all my other wishes

Maybe I’ll just shave my legs tomorrow or the next,
I’ll wait for a new razor, I think this one has been hexed.
Most my nails are broken so I’ll pass on that one too
the other stuff sounds nice, but I’ve got too many things to do.

Like drop from sheer exhaustion and drift off to sleep and dream,
of perfect little children and a house that’s always clean.

REALITY CHECK

The morning sun has risen, a new day lay ahead,
and there’s a morning snuggle bug curled up in my bed.
I wrap my arms around him and hold him near my heart
I cannot think of a better way for a brand new day to start.

I really can’t imagine someone else to take my place,
and chance missing a precious little smile on a dirty little face.
The housework’s not that bad, not compared to other things,
like the joy and love and laughter having a family brings.

Crystal R. Cook

Argh. My crazy might be showing.

A little OCD

It’s just a touch off center,
the lines aren’t lined up right,
so much is so uneven,
everyday this is my plight.

Too many things are skewed,
unbalanced, wrong and off,
I cannot help but notice,
I cannot make it stop.

Labels are always crooked,
cushions are slightly turned,
stupid slanted bumper stickers
cause unwarranted concern.

Tell me why it’s so damn hard
to replace the toilet paper right,
when someone rips a sheet in half
it keeps me up at night.

It’s positively crazy,
ridiculous and insane,
it’s not a conscious effort,
just something in my brain.

I try to look away,
and think of other stuff.
I tell myself it’s silly,
but it’s like I’m stuck.

I’m not obsessively obsessive,
I just notice little things,
you’d completely understand
if you were slightly OCD.

Crystal R. Cook