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

I’m back. Have you missed me? C’mon, be honest….

hannah and mom

I’ve been gone for far too long and I’m sure there are folks out there wondering if our family has fallen off the face of the earth.  If you’re miffed I’ve been missing, by all means let me know.  Because sometimes this autism mama blogger needs someone to light a fire under her butt.  Might as well be you.

dancing on the beach

Truth be told, the past year has been a wonderful, crazy, rollercoaster of life events and I expect 2014 to be equally as amazing.  I am excited to tell you all about it!  I’ve done a lot of dancing.  My outlook and my family have expanded in wild, new ways and this year I know I’ll have an abundance of cool opportunities to take my writing and my passion for life to a whole new level.

So please check in, say hi, stay tuned and keep coming back.  I’ll be here.  Promise.

me and Hannah 2

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

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