Love works every. time.

alex and me

Wanna know the power you have in the universe?

Wondering if a village can move a mountain?

Unsure about whether every prayer and intention is truly heard and answered?

Read on and wonder no more:
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ALEX IS STAYING AT HIS CURRENT RESIDENTIAL PLACEMENT!!
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We did it! 
All the love and support, prayers and good vibes you all have poured into the world over the last few months have worked.
Mountains have moved, obstacles have vanished. 
The decision-makers and clincians involved have been inspired to find better, more creative solutions than moving Alex, because keeping him near his family is simply the right thing to do.
I am so grateful to you and to everyone at Alex’s placement.  
Thank you, thank you, thank you for believing in my boy and giving him the chance to create his success story in the environment that can make it happen!
WOOHOO!
God is GOOD!!!

 

High enough to see beyond horizons….

20140606-174432-63872514.jpgToday I went to the bank to get my passport out of the safe deposit box.  I figured it was probably time to renew it, even though we don’t have any specific international travel plans right at the moment.  As I rifled through the box looking for it, I came across the baby journals that I wrote for Alex and Hannah.  These are books I started long before they were born, when I first learned I was pregnant.  I continued to write in them until each kiddo was in preschool.  Alex’s journal is full; Hannah’s stops halfway through, but she is the second child and admittedly, I did kind of have my hands full by the time Hannah became a toddler.

Tucked into the front of Alex’s journal, I found a small note.  It’s a copy of a letter I sent to my best friend in San Francisco and although it isn’t dated, I believe I sent it in the summer of 2006.  My friend at that time was preparing for his yearly trek to Burning Man, “an annual art event and temporary community based on radical self expression and self-reliance in the Black Rock Desert of Nevada.”  As part of the Burning Man community experience, each year they designed and constructed a beautiful non-denominational Temple where people could write and attach notes to loved ones, prayers, wishes, thoughts, hopes and dreams.  At the end of the week-long event, the Temple was burnt down, after which everyone would pack up and head home.  I had been wrestling with my guilt over Alex’s autism, trying to connect with my higher power and stay strong as Alex’s mother.  I wanted to send my tangle of emotions and resolve out into the universe, somehow point it all directly towards the heavens, and let it go.

My friend did me a great honor that year by carrying the note to the Temple on my behalf.  He taped it high on one of the walls and took pictures so I could see exactly where it was attached.  Then he videotaped the burn.  I watched and cried as my words rose in ashes straight up to the sky.  I made my promises to my son, and let go of what I couldn’t control.  And I felt something heal inside me.

Through all the challenges we have faced recently, and despite all the pleading prayers and focused intentions on which I’ve steadied myself, I had forgotten something important.  It is not my place to determine Alex’s life.  He is a child of the universe, and as such he is always cherished and protected and lifted up.  My job is simply to do the best I can to take care of him while he is here on earth, and to respect the life he was born into for reasons more important than right now, and a greater purpose which I in my basic human-ness may never fully understand.

Reading the prayer of my younger-mother self today was a timely reminder of all of this.  I am grateful to be able to share it with you:

 

20140606-174431-63871606.jpgDear Alex,

I love you and I am proud of you always.  I feel I was born to be your mother. 

You are bright and capable and you will make great contributions to the world.

I bring this prayer here because I want to let go of my guilt.  I know I did not cause your autism.  But when I see you struggle with your words and scream in frustration, I wish more than anything I could make it better, make it easy for you, take away your challenges.  Yet I know the easy path is not the one you’ve chosen, you chose this life for its lessons.

I pray for strength.  I pray for compassion.  I pray for hope. 

I know that we are stronger together and that God has blessed us with each other.  I promise I will never give up on you.  As these prayers go up to heaven, may we both be lifted high enough to see beyond horizons.

Love, Mommy

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Thank you for all your prayers!

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I am so grateful for all the blessings we have in our lives! Our family has been loved and supported in the most amazing way over the past few months since the craziness started with Alex’s placement and talks of moving him. I am so grateful for all of your prayers and good thoughts!

The update is that in just about every aspect Alex is doing better. The high intensity aggression has come down, medications have been adjusted to the point where we think we’ve got the right amounts to help just where he needs it, and he is overall a happier, healthier kid. Alex’s direct staff seem pleased in general.

But on Friday, one of the administrators called me to “touch base” about my trip to New Hampshire to see a possible placement (a trip I’m leaving for now). He said plans are still moving forward to make Alex leave his current placement– the only place that has made serious progress towards helping him get home to us. When I asked why that was still the case given all the positive progress we’ve seen (which has eliminated doubts of their being able to treat him) I was told they’ve got a “quit while you’re ahead” type policy (my words, not his).

So I need your prayers again. Please pray that all of the people involved with my beautiful boy will see clearly the importance of keeping him near his family, and will advocate in every way possible to make that happen. Pray that I will know the right questions to ask in NH to get the information I need to advocate for Alex. And please pray that God will open the hearts and minds of any naysayers so that they can clearly see there is a win-win-win solution out there and we can find it.

This is not about a mother’s sadness at the prospect of missing her son. It is about the deep knowledge I have of what makes Alex tick and what will truly help him. I refuse to allow him to be punished by taking away the one thing that is most meaningful and rewarding to him– family contact.

Thank you for being here to listen.

xo

Please pray for Alex.

the best man

Our family needs your prayers.  We have just been told by Alex’s residential treatment staff that unless his aggressive behavior significantly decreases in the next two weeks, he will have to leave.  This may mean my baby– my heart– may be sent to another facility several states away.  I will do everything in my power to make sure he stays at his current placement and near us, his family, but I need your help.

Please, if you are part of any kind of prayer chain or community, add Alex’s name to the prayer list.  Pray that his high-intensity aggression vanishes, that he remains calm and safe at all times, especially with the residential and school staff.  Pray that a higher power will influence all the decision-makers in this case and will guide the hearts and minds and hands of those who care for Alex.

And please pray that Alex will know he is not alone and all the people who love him, clinicians and teachers included, will stick by him and advocate for his well-being.  Alex needs to know his situation will change for the better if he is safe, and that the people around him believe in him even though he struggles.  No other place has been better for Alex than where he is now and we still believe they can help Alex get to the point where he can come home.

If you feel so inclined, please share this message with as many people as you can.  My goal is to have at least 50,000 people sending out prayers and good thoughts by tomorrow.  Thank you, we are grateful for your help.

hannah and alex

Love After The Storm.

Dear Electricity,
While you were away I had a lot of time to think. And now that you’re back, well… the thing is… I love you.

It might sound hokey and you’re probably thinking, “You say that to all the forces of nature after an ice storm.” But baby, I’m serious.

I know I haven’t appreciated you for all the little things you do, like running my dishwasher and lighting my front porch– and the night lights! man how I love those little things….

But I promise to pay more attention to you, and to be more grateful and not overwork you or curse at you if you run up my credit cards at PECO buying new currents or transistors or whatever you girls are into these days…

Hey wait, come back, that was a bad joke, sweetie, don’t be mad.

Anyhow, I know we’ve been on and off for a while. But I’m ready to take our relationship to a whole new level…I want you to stay. Permanently. Please tell me you’ll stay.

Love,
Cathy

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Never Assume Anything

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Today I am grateful for:

  • A slow ride down the expressway to work.  I was traveling behind a green sedan driven by a heavily tattooed, grandfatherly man in a hometown baseball cap.  On his bumper were several stickers including “Marine for Life” and “Purple Heart.”  And in the back window?  The cutest collection of stuffed animals ever assembled—including several critters from Hannah’s personal zoo on her top bunk bed.  It reminded me that no matter how much we may think we know about the world or about anyone else, we should never assume anything.
  • Aubrey, my beloved.  As I type this, she is at Children’s Hospital with Alex who is undergoing a fairly routine GI procedure.  She’s texting me the “play by play” and reassuring me that Alex is doing just fine with all that’s going on.  No matter how much time goes by, I remain forever grateful that she has come into my life, that she has glided so expertly into the role of second mom to my kids, and for the mutual love relationship that has developed between the three of them.  I could never have wished for anything more.
  • My mother, who in dying gave me the gift of knowing permanence.  She is still with me every day.  And she still gives me the opportunity to know her better.  As my life moves on, I think about her in new ways, I feel her presence and I see the signs she sends me.  I miss her as a living being I can hug, but – at least in my times of calmness and clarity—I understand without a doubt that she lives on and that one day I will meet her again.  Two years ago I had no idea I would come to this place.  And I’m sure the journey will continue.

I am grateful for…

the chance to live without assumptions…

the freedom to experience my life…

and the opportunity to learn from it over & over again.

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.

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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.

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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

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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!

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