World Autism Awareness Day 2013

Today we light it up blue, my beautiful boy!

In honor of you, my beautiful boy!

Because you are loved and handsome and fine,

And because I am honored you’ll always be mine!

How will YOU light it up BLUE?

 

 

So how will YOU light it up blue?

Tomorrow is World Autism Awareness Day. 

It’s a chance for all of us who love someone with autism to tell the world who we are.  Even if you think it’s just another quirky theme day, please add a little bit of blue to your day somewhere.  Families like mine around the world will be grateful for the acknowledgment and show of support.

xoxo

Cathy K.

I WANT MY BOY BACK!

Mostly I write when I am inspired or feeling strong and defiant, ready to take on the autism-bad and replace it with hope and quirky-good.  To conquer fear, doubt, shame, guilt and win.  Today, however, I am writing to throw one big freaking temper tantrum.  Ready?  This is me screaming to the universe:

I WANT MY BOY BACK!! 

It is not fair, God!  Not fair!  I don’t know what you’re playing at or why you chose me, but I sure as hell am ANGRY at you today.

We have been flexible, we have been compliant, we are following the rules– insurance rules, treatment recommendation rules, societal rules.  Alex is now living at a new residential treatment facility.  His father and I have confidence in the new treatment team and the staff.  We are optimistic that with their guidance, Alex can learn to control his aggressive and violent behaviors and be able to live at home with us. 

Once again, we’ve made the transition to something new, something “better.”  We have taken the please-give-us-hope-because-we-are-beaten-down-and-we-don’t-know-what-else-to-do-for-our-precious-son option.  Yet again.

Things have gone well so far with the new place.  The treatment team cautiously advised that they will help Alex learn to control his behavior and aggression to a reasonable degree, we can’t expect perfection.  I stated I could handle anything about the autism, anything about the plan.  Just not violence toward me or his sister. 

Agitation?  Fine.  Screaming?  Fine.  Non-compliance that doesn’t lead to dangerous situations?  Fine. 

But not the violent lashing out, not the glazed-over rage and intense physical aggression.  No more blood, no more deep bruises that turn 17 colors before finally fading into a semblance of age spots on my hands and arms. 

No more.

We had a good visit on Sunday.  Alex was troubled earlier in the day by having to return to his dorm after his first overnight with his dad in a month.  He wasn’t particularly content when I arrived, but I could tell he was glad to see me and Hannah.  During the first two hours of our visit, I knew that Alex was at least comforted by our presence, and at least mostly enjoying our activities.  We talked and interacted, Alex listened to me and responded, we were allies.

After running around the playground acting silly, we returned to Alex’s dorm for a quick break so the girls could use the bathroom.  Another resident was crying and screaming:

“I want to go home, I want to go home.” 

Alex wants to go home too.  He reacted with screams.  When Hannah and I finished in the bathroom and returned to Alex, he was sitting relatively calmly with his staff.  It was clear he was still upset by the plight of his friend, but he appeared to be handling things okay. 

Without thinking, I approached him and leaned over close to talk to him. 

I said someone would help his friend, that the staff were all working to help his friend be okay, and that the best thing we could do was to have safe hands and be calm.  Things I’d said a hundred times before over the last year.  Alex listened, he leaned his head next to mine and seemed to breathe easier.  I kissed his hair.

I felt safe and confident, being so close, because I knew we were on the same page and he trusted me. 

I knew he was agitated, but I thought the worst was over.  I felt like the mom I’m supposed to be, the one kids turn to when they want to talk or when they’re confused or sad.  I kept talking to Alex in a reassuring voice.  We were together in this moment and our situation (the day, the living arrangement, the vibe) wasn’t ideal, but we were okay together.

I got that wrong I guess. 

Maybe everything was wrong and I didn’t see.  Something must have been terribly off about my perceptions because what happened next came out of the blue and was bad.  Alex stabbed me in the face with a pen just under my left eye.  He drew blood.  Another half inch higher and I could have lost my sight.  I had seen the pen on the table, but didn’t think twice about it.  I hadn’t been scared, I thought I knew he wouldn’t do anything to hurt me.  For the first time in a year, I had been so blissfully ignorant of the danger. 

I’d felt like we were back to the mother-son relationship we used to have– the time when I felt confident enough to tackle anything, when our daily circumstances could be less than ideal but we could be together and working on it and it would be enough.

Today I am sad, I am angry.  Today I hate autism.  I hate “intermittent explosive disorder” and every other name that childhood violence is called.  I hate feeling traumatized and out-of-control after a simple visit with my children to the playground. 

But what hurts the most is that I yearn to feel safe and protected, and yet I don’t want to be protected from this. 

I don’t want someone to “keep me safe” from my son.  I don’t want to have to watch for the pens on the table, to be an arm’s length away.   I want to be able to kiss Alex’s hair and talk gently to him and be where he is.  I want to do what I know how to do– to merge my “clinical” skills and my “mom” skills and just be the mother I was born to be to this one particular boy.  My boy.  I don’t want anyone to move me out of harm’s way. 

I want the autism to go.

I JUST WANT MY BOY BACK!

What cancer feels like…

 Having someone you love be diagnosed with cancer is an experience that is hard to describe unless you’ve lived through it. 

Last year on the anniversary of my mother’s death, I wrote “The in-between day” about my grief and my perspective from the other side of that 365-day transitional time.  This year I didn’t write anything.

February 28th came and went pretty much like a normal day.  Late at night, when the clock neared 12:15 am on March 1st, I started to cry but said nothing, wrote nothing.  I didn’t reach for Aubrey, I didn’t talk about it for an hour.  I just sat silently, trying to feel my mother’s presence, trying to hear her voice.  I couldn’t feel her and I heard no sounds that might have been a sign she was with me.  I felt lonely.

Now as I begin my third year of grieving, my thoughts are pulled back to the cancer time.  The diagnosis, the fear, the treatment, the hope, the reality and trying to figure out how to help Mom live and die in the way that was important to her.  As I reflect on those events, the images in my mind are of the ocean.

The cancer time, from diagnosis to death, felt to me like being on a small fishing boat just floating in the middle of the water. 

Unlike my sea-worthy mother, my stomach does flip flops on the ocean and it’s not a comfortable feeling for me.  But without any motion sickness drugs, I had to find a way to relax into that rocking sensation and just stay on the boat deck and be present.  Sometimes the ocean was choppy, the waves were high and threatening, and I felt like I would sink and drown.  But I never did.

On good days, if I was present and I stayed on the boat, I could enjoy the sunset or notice how beautifully the lights reflected on the water.  My family could talk about the day they saw the dolphin, or how amazing it felt to nap in the sun on the deck that one afternoon. 

On the bad days, I rode out the storms that came and kept telling myself that no matter how bad it got, the boat would not sink, I would not die from crying, somehow my life would carry on.

Having someone you love be diagnosed with cancer feels frightening and out-of-control, and it is just that.  The overwhelming grief and fear can throw your boat around on the sea and leave you bruised and battered. 

The only thing you can really do is to hold on, remember you will not sink, and be present enough to experience the joys you’re not expecting to happen. 

Because when you get to the third year of grieving, your boat ride may be the only part you can remember for a while. 

And there is great reassurance in remembering that you did not miss the sunsets.

Weekly Photo Challenge: LOVE

In our home, love means being so comfortable with each other you can fall asleep in one big snuggly heap.

In 2013, I want to make this place your home…

The song in my head on this New Year’s Day:

I know this song was not written about autism or me and my son.  But when I listen to it, it touches my mama heart in a unique way.  I hear the words and I envision a home where Alex can live happy, healthy and safe with the people who love him most.  I remember how our family worked hard to make the world okay for Alex, to enable him to enjoy everyday experiences, to show him new things.  I think of the anxieties and sensory issues that are so challenging for Alex and so many kids on the autism spectrum.

Thank you, Phil Phillips, for writing a song that inspires this mother to think once again about creating a real, functional home for my son. 

For inspiring me to believe it’s possible for Alex to come home to us, and for helping me to see the detailed pictures of that transition in my head. 

I am grateful for your poetry and your beautiful music.

~*~*~*~*~*~*~*~*~*~*~

“Hold on, to me as we go,
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.

Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.”

~ Phil Phillips

What I Did in 2012.

Just a few of the things on my big list of 2012.  Stay tuned for 2013.  It’s gonna be a great year.

In 2012, with a guardian angel watching over, I …

• Took pride in my new home.
• Planted things.
• Helped people on the phone.
• Advocated.
• Journeyed with Alex to residential treatment.
• Re-discovered the connection I have with my son.
• Packed a lot of boxes.
• And unpacked them too.
• Sold the first house I ever bought.
• Framed Hannah’s artwork.
• Created an awesome room for my first/second grader.
• Adopted another gecko.
• Traveled.
• Lived a whole year without my mother.
• Said goodbye to my mother’s house.
• Started cooking dinner again.
• Wrote a lot.  Wrote poetry too.
• Cried a lot.
• Started running again.
• Finalized a divorce.
• Made new friends.
• Went to the theater.
• Invested in things I care about.
• Made contributions.
• Gave gifts.
• Fell more deeply in love with an amazing woman.
• Fell in love with her two chihuahuas.
• Got engaged.
• Celebrated Thanksgiving with Alex and Hannah and Aubrey.
• Reclaimed my family’s collection of Christmas ornaments.
• Added new ornaments for my new family.
• Expanded my vision for the future.
• Started planning a wedding on the beach.

For all these things, big and small, I feel very grateful.

Best wishes for a Happy Healthy New Year dear readers!

Daily Prompt: Immortalized in Stone

On December 14, the day of the Sandy Hook Elementary tragedy, the WordPress Daily Prompt was “Dear Mom.”  Today, on what would have been my mother’s 69th birthday, the prompt is “Immortalized in Stone.”  The picture in my head is her gravestone, although the WordPress prompt was not about death, but about commemorating a life and carving out a symbol of significance.

And so here I begin….

~*~*~*~*~*~*~*~

Dear Mom,

Throughout this last year and nine months since your death, I have felt your presence in big and small ways nearly every day.  The fact that you gave birth to me 40-some years ago is not lost on me.  I continue to be Susan’s “Little Chip” as you loved to call me– a “chip off the old block” minus the “old block” part.  We have matching hands and I have always been grateful for that because every time I look at mine, I can see yours.  It is like a window into your life, a connection to a perspective I couldn’t otherwise have.  When I look at my hands at the age I am now, I can flashback to the two of us together when you were my age.  I remember who you were to me, and I can see myself through your eyes.  I know what my hands will look like 20 years from now, and how my daughter will hold them and watch them.

Hands are for doing, for holding, for shaping and sculpting.  You were my sculptor in so many ways.  You helped form the woman I am now and everything I know about being my true authentic self began to grow from ideas you instilled in me as a little girl.  My spirituality, my parenting, my creativity, my persistence.  The way I create a home, the way I work, the things that make me giggle with pride.  I am humbled to see your hands– your busy, graceful, purposeful life– through my own and to know that I am helping to guide my daughter’s life as you did mine.

What have I wanted to say to you but haven’t been able to?

Nothing.

There is nothing I left unsaid at your death.  There is no joy or sorrow or secret you did not know about me while you were alive.  I only wish that you could see my hands now, wearing a ring that Aubrey and I had specially made with Grandma’s diamond in the center.  I wish I could show you and giggle with you about how it sparkles in the sun as we walk to the beach from your house.  I wish you could meet Aubrey and make a fuss over her and serve her dinner on your porch.  I wish we could wedding plan together.

Aubrey and I will be married on the beach down the road from your house.  Our names will be painted on the side of the wedding shoppe you always liked.  Your best friend in the ministry has said she will “channel” your spirit so that you can once again lead my wedding ceremony.  (Please make this easy for her, Ma, and remember there’s no need for dramatic sweeps of wind or rain during the ceremony, okay?  I promise I will know it’s you.)

The sculpture you began when I was born is a work in progress, ever-changing.  By the time I see you again in heaven, there will be another set of little hands drawing and sewing and carving out a life of her own.  Perhaps she will be wearing my ring and thinking of the generations of women who started out before her, and the generations who will come after and what mark they will make on the world.

I miss you every day, Mom.  I remain proud to be your daughter and humbled to bear your resemblance.  And I will always be grateful for our matching hands.

With love,

S.L.C.

~*~*~*~*~*~*~*~

Daily Prompt: Immortalized in Stone

Your personal sculptor is carving a person, thing or event from the last year of your life.  What’s the statue of and what makes it so significant?

Daily Prompt: Dear Mom

Write a letter to your mom. Tell her something you’ve always wanted to say, but haven’t been able to.

Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

What to tell your school districts about autism and violence

Dear Readers,

My friend Jill, who writes at Yeah. Good Times. has given all of us a tremendous gift.  In response to the tragedy at Sandy Hook Elementary, she has written a brilliant letter explaining autism to her local school district and she has invited us to share it.

Jill’s entire post can be found here.

In the meantime, I feel so passionately about distributing this information to every teacher, counselor, parent, family, human being that I’m re-posting the entire letter below (with permission from Jill of course!)

Please, please, please share this.  Don’t do it for my Alex, don’t do it just for your kid or neighbor or student.  Do it for ALL kids everywhere.  Because every step toward greater understanding is a step toward peace.

Thanks for reading,

Cathy K.

~*~*~*~*~*~*~*~*~*~*~*~*~*~

Dear (school) community:

There has been much discussion online and in the news about the connection between the Connecticut school shooting and the fact that the shooter may have been diagnosed with autism.  As our families and our community discuss this issue and try to find a reason for this heartbreaking tragedy, I feel that it is very important to remember the following:

There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind.

Autism is not a mental illness; it is a developmental disability.  Many autistic people may have emotional regulation problems, which are impulsive expressions of frustration and anger, that are immediate and disorganized.  They may lash out with threatening statements or behaviors, but these behaviors are impulsive reactions, they are not deliberate or organized plans.  Once the situation has been diffused, the behaviors will stop.

What happened in Connecticut required methodical planning of a deliberate and tremendously violent act; this is not typical behavior of an autistic person.

Right now we are all struggling to find a reason why this kind of atrocity would happen, and we can speculate about the mental state of the shooter; about gun control laws; about the current state of our country’s mental health system, or about whatever else might help us make some sense out of this.

Please know, and please tell your children, that even if the shooter was autistic, autism is not the explanation for this tragedy.

If anybody has any questions about autism, please do not hesitate to contact me.

Thank you very much for your time,

Your name here