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

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.”

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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.

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

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

Weekly Photo Challenge: LOVE

true puppy love

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

Alex, honey, let go of the door… there’s no dog in that one.

kids halloween 2010

Remembering Halloween two years ago.
Read about our really special neighborhood.

“Be Like Buddy” launches this week!!

I’m going to keep this short & sweet.  Once upon a time in the land of autism families there lived a Dad.  An ordinary Dad, who was married to an ordinary Mom, who had an ordinary… well, not so ordinary Son.  When he discovered his son wasn’t living in the land of the typical but was going to lead his family in a new direction because he had Autism, this Dad did something extraordinary.  He put his desire to give his son the chance to experience the world in the most full, real way possible ahead of his regular Dad worries.  And he created “Be Like Buddy.”

One video, one skill, five minutes.  These are new, but they are already making big changes in the lives of ordinary families with extraordinary children.  And you can get yours for free at the online launch party this Thursday and Friday.  There will be tons of free stuff on the “Be Like Buddy” website (you can learn more on their facebook page or by following them on Twitter, too!)

Being an ordinary Mom myself, I know how many “new things with possibility” float by our desktops & kitchen counters every day.  Yeah, it’s a lot, it’s true.  But trust me– “Be Like Buddy” is one of those things you’ll want to have and sharePlease help me spread the word and tell your ABA therapists and teachers and family members about “Be Like Buddy.”  Then come to the online launch party and get the videos for yourself!

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Dude, where are my preconceived notions? No, seriously, dude…

autism home rescue 0526201201Okay, it’s my first official love post.  Gag all you want, I’m writing it anyway.  I am so blown away by what an amazing relationship the universe has given me that I just feel the need to gush about it sometimes.  Mostly that happens behind the scenes, but today it’s front and center, home page news.  Read on if you wanna discover a few of the many reasons I fell in love with my girl.  Or if you’re feeling more serious today, flip back through the blog archives and read about autism diagnoses or divorce or residential treatment.  Personally, I’d stay here to catch some gossip.  But it’s really your call.

Still with me?  Wow, cool.  Okay then.  I present to you the…

TOP TEN REASONS I LOVE MY GIRL

10.  She can use the word “dude” in context & appropriately in a clinical setting in her job as a physician.  As in:  Young & healthy but nervous patient:  “Doc, you gotta help me, I think I’m having a heart attack!”  Aubrey:  “Dude, you are not having a heart attack.”

9.  She can get Hannie out of a snit faster than anyone I’ve ever known.  She never backs down from the Taurus bull horns until my baby bull daughter is smiling.  I don’t know exactly how that works, but I love it.

8.  She lets me take her picture (get your mind out of the gutter, this is a family show) even though she hates being photographed.  How much does she love me?  She bought me a camera for Christmas.

7.  She can be tough as nails when she has to be, but when it comes to her chihuahuas she’s as sappy as the most sentimental mama.  Her high pitched “doggie voice” is so sweet that even the geckos gaze lovingly when she talks to them.

6.  She says she’s shy, but I’ve never noticed.  … Okay, I’ll wait for that one to sink in– read it again… and…. did you get the word-behind-the-words?  … There you go.

5.  She lives deliberately, makes choices thoughtfully and solves problems ethically, for the good of the people she cares for.  I have a tremendous amount of respect for her.

4.  She is impossible to place “in a box.”  To know Aubrey is to abandon your preconceived notions, because she’ll just blow right through them anyway.  An ex-military flight surgeon who’s afraid of mice?  A tattooed chick with a motorcycle who drives her fancy SUV with her tiny dogs perched on her lap like Paris Hilton?  A critical care doc who can run codes in the ICU, but who cried at the preview of “Chimpanzee?” *  Trying to capture her with a limited world view is like trying to measure the movement of an electron– the more you try, the more she’ll open your mind in the process (google “Heisenberg Uncertainty Principle“).

3.  She is committed to learning & growing, she is willing to try again.  And she’ll never give up on the people she loves.  Ever.

2.  Alex and Hannah both love her.  Not because she’s in a relationship with their mother.  But because she’s taken the time, had the patience and made the effort to get to know them, to find out the individual, beautiful people they are, and to build a connection with them on their terms.  If you’ve read *anything else* on this blog about Alex especially, you’ll know what kind of person that makes Aubrey.

and the number one reason I love my girl:

1.  Her love and acceptance have brought a secure, peaceful feeling to my life that I’ve never known before, and when I think about our future together I just feel so darn HAPPY!

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*  Click here to find out how to help chimpanzees in honor of my girl

A prayer for the new people in our old house

The last two months have been a tidal wave of housecleaning.  Literally.  On April 27th, the first house I ever owned, 3300 square feet which my ex-husband and I chose 13 years ago as the place we would raise a family, the home where both of my children were born, became the property of another family.  Then on May 11th, my mother’s house was sold, leaving another empty space in what I had always envisioned of my life plan.  These two transitions felt like major losses and big changes on one hand.  But on the other hand, they each brought unexpected moments of peace and triumph.

Our family home went not just to a mom and dad and two little kids, but also to a church family.   A nearby Presbyterian congregation purchased it to use as a parsonage.  This fact brought such calm to my heart because it was an assurance that there would finally be a whole village of people– an entire community– to repair all that had been broken.  A new group had come to fix up a place I had loved but hadn’t been able to care for.  The broken windows, the cracked stair spindles, the doors off hinges (mostly the result of my son’s rages) would be replaced, repainted, remodeled.  For nearly a year, every time I had come back into that house, I felt the pain and loneliness sting.  It was as if the house itself was a child I had once loved but abandoned.  When I looked at bits of peeling wallpaper I had long since given up on smoothing over, part of me remembered gently taping and cleaning and making better little parts of this house the way a mother washes a scraped knee, puts on a bandaid and makes everything better with a kiss.  Even Aubrey felt it the first time she came there with me.  She said she understood why I cried about it and why it was so hard, but that cleaning it out and selling it would be like opening up a wound to wash it out.  At first it would feel really raw, but in time– and soon– the wound would heal and it wouldn’t hurt so much.

For months I tried to sort through the things left in that house.  As much as I tried, I could never bring myself to organize a plan to clean it out completely.  I just couldn’t face the ghosts in that home because I had nothing to tell them.  And I didn’t know how to explain my departure and close it up.

The week before settlement, Aubrey and her family helped me move key pieces of furniture to storage.  Then the day before it sold, Dan and I brought a truck to get the rest.  It took hours more than I expected.  Everything was heavier than I had anticipated.  We worked from 9 AM until 11 PM and were not even finished.  Throughout that hard day, I wracked my brain trying to figure out how to get closure, how to transition the house and myself in a way that felt good.  I felt much the same way about getting closure with this home as I had about writing my mother’s eulogy– I had one chance, it was going to be a challenge, but I would never be able to take a do-over on this one.  If I wanted to do it in a way I felt proud about, I had to do it now.

Feeling depleted and out of tears, the morning of settlement very early I went back to take a car load of donations to the thrift shop and say goodbye.  I vacuumed each room for the last time, closing the doors as I went along.  Then I loaded the car and went back inside.  I decided to honor the house by saying a prayer in each room, much the way my mother and her friends had done for a house blessing years before.  But this time I added a new twist.  Stepping through each doorway, I recounted all the things I felt grateful for in that room.  And then I asked the universe for special protections for the new family.  I don’t remember my exact words, but the gist of this prayer of passage is below:

Dear Lord,

Thank you for this space you helped me find & create

Thank you for the fun we had here, for the chance to see my kids learn to walk in this home,

for the meals made in the kitchen, for the holiday celebrations.

Thank you for the doors that welcomed so many people, for the nooks & hiding places my kids explored. 

Thank you for that feeling of calm & shelter when the weather was bad or the night was too long.

Please, Lord, bring the new family joy as deep as that in this house.

And God, please, please no mean words in this house.

Protect the new family from conflicts that have no resolution, keep them safe from harm,

strengthen the walls, the windows & the doors so that they may not break or slam.

When they feel sad, bring them comfort.

When they feel angry, let this home become a soothing place that calms them.

Make this house a place where love & respect & peace & tranquility can live.

And no matter what, through everything that may happen in their lives,

please help them to know

they will always be protected and loved.

I cried through it all, I repeated myself and stumbled over almost every word.  I must have sounded like a blubbering idiot, talking to the house as if it were alive, reassuring it that this change was good and things would get better.  Even from a clinical perspective, I still haven’t figured out what all of that was really about, or how it helped.  But it did.  When I left, I walked out the door for the last time feeling like I had accomplished the task I set my mind to.  I left flowers in a pot on the foyer table, with a note for the new owners which read:

“We tried our best to clean everything, but we know we missed some things (hence the clean out service).  The last few years were rough for our family, and many things kinda fell apart on us– including this house.  But before that hard time, this home was a place full of laughter & joy.  We hosted family celebrations, huge Christmas tree trimming parties and ‘drive-in’ movies in the back yard, and the house was always filled with people.  We hope that you find as much joy here as we once did.”

I felt tired and run-over as I followed Dan back to the truck rental place, thinking about the overwhelming number of boxes I had just added to my new garage.  As we drove back to our neighborhood, Dan remembered the letters from Alex’s bedroom door.  I dropped him off and went back to get them.

When I knocked on the door– on my own front door which wasn’t mine anymore– another mom who looked as familiar as family opened it and invited me in.  She was kind and soft-spoken.  Her son (age 4) and daughter (age 2) played around her as we talked, giggling and running around in circles from the foyer to the breakfast room to the kitchen over and over like my kids used to do.  She told me my note really touched her.  She invited me to talk about the house.  And she listened.  When I couldn’t hold back my emotions and the tears welled up, I told her about my prayer and she offered a hug, which I accepted.  Finally, I realized the closure.  It hadn’t come through an ending, but rather through a new beginning– which in this house was hers, not mine.  The new mother in my old house allowed me to share in her beginning, helping me sense the security I needed for a transition much too big for words or rituals.  And the second time I said goodbye to that house, holding A-L-E-X in my hands, I finally felt the healing begin.

Sisters + Happiness = Hannahappiness?

autism home rescue 03081201A while back I joined a group in my area called “The Happiness Project.”  In one of their email newsletters, they referenced an article on sisters and happiness:  Why Sisterly Chats Make People Happier

I thought the article was really interesting, and it started me thinking about my little girl and her relationship with her brother and all the intricacies of their sibling situation.  The article was focused on adult relationships, but of course my mind kept going back to language and kid conversation and the difference between Hannie’s communication and Alex’s communication. 

Last week Aubrey and I visited Alex and took him out for a round of mini-golf.  On the car ride there, I babbled and commented and babbled on– as I usually do.  Alex sat quietly, watching the road (he is so big he can sit in the front seat now, believe it or not!) and listening.  At one point I paused and said:

“Moms talk a lot, don’t they?”

which elicited both a smile from Alex and a laugh of agreement from Aubrey in the backseat. 

autism home rescue 0308201203Moms do talk a lot.  Apparently, this starts when we’re kids.  And if we’re sisters, the talking– just the stream of everyday conversation– can be reassuring and helpful to our siblings because of more than just the content of the words.  The routine chatting, describing, talking about the weather, so to speak, in itself can create connection.  Maybe it’s not the words exactly, but the word-behind-the-words or the feeling of “sharing life together” we get when someone talks from their own perspective about what’s going on out there in the world.

I mean, c’mon– that’s the reason you read my blog, right?

autism home rescue 0308201202I like to think that Hannah’s little conversations, the sound of her voice, her questions, the way she says “I love you” will be important to her brother as they grow up not just because of what she says, but because the sisterly babble will remind Alex of the lifelong connection they’ll always share.

What do you think?

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