Beautiful Hannah Rose

MinnieHappy Birthday my dear sweet Hannah Rose! 

Eight years ago today you came into the world at 11:10 pm on your actual due date, making you the first female in our family to be on time for anything.  Dr. K. said it was the most perfect birth he had ever witnessed, and I *knew* that God was right there in that room with us.  When you were born, Dr. K. put you in my arms and you raised your little head and looked straight at me.  It was the happiest day of my life!

I love you more today, eight years later, than I could ever have imagined then.  You have brought a magnitude of hope and sunshine into our family.  I admire the way you see the world, your sense of humor, your gratitude and appreciation for life.  I am honored that I was chosen to be your mother and I just want you to know I so enjoy the life we have together.

This morning I noticed the note and picture you left on the fridge.  You drew yourself with me, Alex, Aubrey, Dad and three little dogs, and wrote:

“I love my family each and every day.”

hannah ballerina

Ditto, beautiful Hannah Rose– we love you too!

Why I Love Being an Openly Gay Autism Parent

When I was asked to contribute a piece to Lesbian Family on what it’s like to parent a child on the autism spectrum as an out lesbian, I was so honored I actually giggled.  To be able to be in a place in my life where I can be open and out and tell the truth about my family, and to share all that with such a supportive community…. well, that just makes me wanna sing!

… Which I won’t do here, but if you were standing in my kitchen, you’d get an earful of show tunes from the woman my future sister-in-law calls “the happiest gay person ever!” …

four of us 2

For me, parenting a child on the autism spectrum feels not so different from my coming out experiences.  The lessons I learned on each side seemed to be all about truth-telling and living life authentically.  The more aware I became as an autism parent, the more I began to live in that space of being ready for anything, open to life, comfortable in my own skin.  Not because I initially wanted to learn about myself or change necessarily, but because I had to.  My son challenged me to connect with him exactly where he was and use whatever resources I had to stay in the moment and accept whatever came next.  It was the only way to parent him.  I had to tap into my intuition and my heart, and throw away all the “what to expect when you’re parenting” books.

The more time I spent living in that open space, the more I wanted all the parts of myself to align, for everything to feel right in every aspect of my life.  I had to find my own “truth” and go from there.

Coming out as a lesbian later-in-life was so easy because I’d already had my preconceived notions about the way my life “should” or “would” be shattered during the early years of being a special needs parent.  I no longer needed to try to create an image of love based on what society-at-large had to say about it, I could recognize love where it existed naturally.  I didn’t need to do anything– relationships, work, parenting, art– the way anyone else thought it should be done.  Nothing anyone else touted was necessarily “truth” for me and once again I had to find my own and live as honestly as I could.

autism home rescue 1121201201

My son, like many kids on the spectrum, cannot really lie.  And now thanks in large part to him, neither can I.  So in the spirit of celebrating our truth and our families and our relationships, I present to you the…

TOP TEN REASONS I LOVE BEING AN OPENLY GAY AUTISM PARENT

10.  Acceptance where it counts, baby!  I didn’t have to come out to my autistic son.  He understands what it means to love someone exactly as they are.

9.  Hearing my 7 year old daughter tell everyone at our polling place:

“I’m voting for Obama because my brother who has autism watches Elmo.  And also because I want my Mom to be able to marry the woman she loves!”

8.  RAINBOWS— one of nature’s greatest light displays!  Eternally captivating, shiny and colorful.  An awesome sensory experience.  And they always seem to come *after* the much-too-loud thunder-booms.

7.  I can relate to all the coolest autism professionals.  Of course I’m not saying all the cool therapists and teachers and autism staff are gay, but you gotta admit that in order to be effective in working with kids on the autism spectrum, you have to have a pretty open heart, a flexible mind and an awesome, inclusive, curious attitude.  Wouldn’t you agree?

Which brings me to the next reason….

6. An ever-expanding network of creative connections!  The bigger the village, the stronger the community, the more sanity for autism parents, the brighter the future for our kids.  And once again I’m back to big beautiful gay rainbows all around!

(… here come the show tunes dancing through my head in a huge street-scene coordinated dance number …)

5.  Plenty of practice forging my own path.  How did I come to be marrying the woman of my dreams?  The same way I came to accept myself as the parent of my utterly unique children– through a lot of hard work.  Even though it didn’t feel comfortable at first, everything in my life was by my choice.  It was tough to be at the beginning, and the journey is constant, but I love, love, love the place I’ve come to now.

4.  Twice the MOM love!  Last year my son officially changed my name from “Mom” to “Mom-Aubrey.”  That said it all.  Plus, the whole is definitely greater than the sum of its parts.  We’re expanding the family unit.  Not just Mom, not just Dad.  “Lesbian Dad” and “Second Mom” and “Mama Cat” too.  Kids need more, not less– more love, more hugs, more positive experiences.  So do autism parents.  (Refer to the village comment in reason #6.)

3.  The chance to SHOW my children– especially my autistic son who is a visual-experiential learner– that true love comes to those who believe in love and follow their hearts.  The chance to be a living example for them of what partnership, respect, acceptance and cooperation really are.

2.  Inner Peace!  You’ve heard the expression “If Mama ain’t happy, ain’t nobody happy” at special needs conferences and IEP meetings, right?  Well honey, let me tell you– this Mama is happy.  In every way.  In ways I couldn’t even have imagined ten years ago.  And much to my surprise, the happiness just keeps on expanding to everyone in the family.  Can you say “trickle down effect?”

And the number one reason I love being an openly gay autism parent…

1.  Because I’m convinced I was put on this earth to do something.  Many days I’m still confused about how exactly to do whatever it is I’m supposed to do…

But when I look at the back of my car with the “Coexist” sticker, the Autism ribbon, the Rainbow peace sign and the Human Rights Campaign logo, I have to smile and breathe a little easier because it all just goes together and somehow I know I must be on the right track.

Guest posting on being an openly gay autism mom….

To celebrate my birthday today, I’m guest posting at Lesbian Family

So please hop on over there to read the …

Top Ten Reasons I Love Being an Openly Gay Autism Parent.” 

I’m so proud of this piece and completely honored to be able to openly share my life with you, my wonderful community of readers!  My family is blessed beyond belief because we have a worldwide village of relatives, friends, helpers, teachers, angels, encouragers and problem-solvers.  We are all very grateful for that.

So what are you waiting for?  Go read my post— go now!

xoxo

Cathy K.

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

When I was asked to contribute a piece on what it’s like to parent a child on the autism spectrum as an out lesbian, I was so honored I actually giggled.  To be able to be in a place in my life where I can be open and out and tell the truth about my family, and to share all that with such a supportive community…. well, that just makes me wanna sing!

… Which I won’t do here, but if you were standing in my kitchen, you’d get an earful of show tunes from the woman my future sister-in-law calls “the happiest gay person ever!” …

For me, parenting a child on the autism spectrum feels not so different from my coming out experiences.  The lessons I learned on each side seemed to be all about truth-telling and living life authentically. …

Read more of this post

World Autism Awareness Day 2013

alex blue shirt 2

Today we light it up blue, my beautiful boy!

alex something to say

In honor of you, my beautiful boy!

alex always loved

Because you are loved and handsome and fine,

mom and alex

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

How will YOU light it up BLUE?

 

 Big Guy

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!

the mom i was

What cancer feels like…

abandon all doubt 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.

boats and rocksNow 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.

boatOn 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.

tulips close upHaving 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.

tulips

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