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.

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!” …

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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.

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.

autism home rescue 1115201202Thank 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

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thirty days of thankfulness.

Thanksgiving is one day, but this year I was challenged to declare my thankfulness for each of the 30 days in November.  Here is my list so far (which will continue to update until December 1st):

autism home rescue 1122201201Day 1:  I am thankful to know such amazingly creative people who share their great ideas!

Day 2:  I am thankful that Halloween was “postponed” so Alex could go trick-or-treating with his sister.

Day 3:  I am thankful for music & how great songs endure for generations.  This morning Hannah was telling me her favorite singer/dancer is Michael Jackson & we were singing songs I loved in high school!

… pretty young things repeat after me, say na na na…

Day 4:  I am thankful for the people who “get” my son & know how to best take care of him.  And I am also thankful for being able to have patience & not bite the heads off the people who are clueless in that area. … sigh…

Day 5:  I am thankful for “dream catchers.”  Since I got one from the craft store for Hannie, all her dreams have been peaceful.  But more importantly, I am thankful for all those “good luck charms” and “magic things” that somehow help when I need a little extra faith.

autism home rescue 1122201202Day 6 (election day):  I am thankful I live in a country where I can speak my mind & I can vote.  I am also thankful for my 7 year old’s compassion for others.  On the way to the polls this morning, she said:

“If anyone asks, I’m gonna tell them I’m voting for Obama because my friend Ethan (who has autism) loves Elmo.  And also because I want my Mom to be able to marry the woman she loves!” 

Amen.

Day 7:  I am thankful all that fuss is over.  Now onto the business of making the world a better place for the kids!

Day 8:  I am thankful for forgiveness.  As in, all those little moments where someone we love forgives our crankiness or frustration & inspires us to try again.

Day 9:  I am thankful for choice.

Day 10:  I am thankful for childhood friendships which endure across the years.  Being able to “share my happy” with my dear friend & kindred spirit Linda today made me feel so lucky & blessed!

autism home rescue 1122201203Day 11:  I am thankful my body works more or less the way I want it to & I am healthy.  I am thankful I can run, eat, laugh, stretch, play and enjoy it all.  And I’m also most thankful to have found someone to share life with who appreciates the same things!

Day 12 (veteran’s day):  I am thankful for the folks in the military, past & present.  All the time I am discussing, debating, advocating & throwing my opinions around, I am well aware that without their service, I might not have even the freedom to write a list like this.

Day 13:  I am thankful for the innocence of children.  This morning while I was digging through a closet to find something, an old note to Hannah from “Santa” fell out of a bag of decorations.  Hannah picked it up, read it and asked with wide eyes:

“Is Santa Claus REAL??”

I paused… then asked, “What do you think honey?”

Hannah replied:

“I think he’s real and he’s AWESOME!”

autism home rescue 1122201204Day 14:  I am thankful for technology.  When I finally got up the guts to check my financial tracking software program this morning, I learned that I’m way overbudget.  But not as overbudget as I thought I actually was.  And for some reason, I’m totally cool with that.  So cool, in fact, that I hopped right on over to Facebook to tell 832 people about it.

…hmmm…  Maybe I’m actually thankful for caffeine and therapy…

Day 15:  I am thankful for my daughter’s perspective.  This morning while I was running around like a nutcase getting ready, Hannah asked:
“Mom, if you were a fairy, what kind of fairy would you be?”
Me (loading dishwasher, making lunch & repairing picture frame simultaneously):  “Huh?”
Hannah (patiently explaining):  “You know– like you could be a water fairy, or a season fairy or an earth fairy … Mom?”
Me:  “Umm.. I guess I’d be a stress fairy.”
Hannah (taking a deep breath):  “Okay, Mom.  You can’t be a stress fairy because stress fairies don’t do anything.  So you can be a water fairy who’s kind of stressed out, okay?”
I think my daughter is trying to do a Solution Focused Consultation.  I just love the heck outta that girl!
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autism home rescue 1122201207Day 16:  I am thankful for healing touch.

Day 17:  I am thankful for do-overs.  As in, the second chances granted by the bigger kids when we were the littler kids and messed up during a game.  I discovered do-overs come in handy in lots of situations… relationships, parenting, careers, cooking, homes, haircuts… you name the flub, I bet you can change it with a deep breath and a compassionate do-over.

Day 18:  I am thankful for Sunday afternoon down time with nothing to do but snuggle in bed.  Day 19:  I am thankful for caffeine on Mondays.

Day 20:  I am thankful there are alternatives to Saran Wrap.  Seriously?  You’re gonna rip right in the middle, stick to yourself & make me cover the bowl with six pieces?  But you can’t ever stick directly to the bowl now can you?  Grrrrrrr….

autism home rescue 1122201206Day 21:  I am thankful for the kind of love that is simply being present.  Yesterday I began the heartbreaking process of having Alex classified as a “disabled child.”  When my anxiety peaked after a long day of paperwork & questions & trying to figure out Thanksgiving preparation, it all tumbled out on the phone with Aubrey.  Instead of fixing or rationalizing or explaining, Aubrey simply asked:

“Do you want me to go with you tonight to see Alex?”

I am so thankful for that kind of loving kindness.  Aubrey’s presence in my life just makes everything better.

Day 22 (thanksgiving):  I am thankful for holiday celebrations with my children.

Day 23:  I work above a major department store which is famous for its animated holiday light shows.  We can only hear the music from certain parts of the office.  I am thankful that for the next month every time I use the closest bathroom to my desk, I’ll be able hear the Nutcracker Suite and Julie Andrews’ voice loud & clear.
I am thankful for this because it is really hard to remain stressed out at my job when I’m hearing Christmas music every time I pee.
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Day 24:  I am thankful for good hair days, inside jokes with my daughter, old classic cartoons, good coffee, breakfast in bed, playful chihuahuas, a great run on the treadmill, kid sleepovers, date nights, stolen kisses & lots of random laughter.  Basically everything that makes a free Saturday perfect.
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Day 25:  I am thankful for trust.  The kind of trust that comes when someone else says, “Everything will be okay” and you believe them.
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autism home rescue 1126201201Day 26:  I am thankful for photographs which capture routine, everyday moments.  I know that years later, those pictures will become important pieces of the puzzle of our family life and future generations will appreciate them more than I can imagine right now.
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I have trouble with transitions….

… and a thousand other things.  But it’s all good because I’m human and I deserve to be loved for the individual, quirky person I am.  Which brings me to the topic at hand:

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Today I am grateful for:

Acceptance

Plain and simple. 

So simple, the beauty of it made me cry. 

We were away for the weekend.  When it came to Sunday morning, my anxiety was peaking.  I woke up and said to Aubrey:

“I’m feeling nervous and out of sorts.  I don’t know why.”

She put her arm around me, gently kissed my head and replied:

“You always feel that way before a transition.  It’ll be okay.”

I felt the tension I was holding in the back of my neck release ever so slightly and a tear escaped.  It is true.  I have trouble with transitions.  I have anxiety about making changes, doing new things.  That’s just me.  

But the relief I felt from her acknowledgement was like that feeling of soothing a sore throat with a cup of tea, or settling an upset tummy with a peppermint stick.

To be known…

to be accepted…

to be validated for the quirky, challenging, difficult things…

Indeed, to be loved for them as part of the whole person I am!

… well, that is priceless and beyond the words I have. 

It’s everything…

it’s safety…

it’s love…

it’s freedom… 

It is, simply put, just the best.

So Aubrey, thank you for knowing me like you do, and for helping me transition.  You are better than peppermint.  I am grateful.

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Weekly Photo Challenge: INSIDE

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When I think of the word “inside” I often think about what it means to “go inside oneself” and where that is exactly.  This week’s photo challenge seems fitting because for the last several days  I’ve been inside my head pondering the many changes that have happened in my family recently and wondering what lies ahead for us.

When I snapped this picture two years ago, I simply asked Hannie to show me her best “yoga pose.”  We had finished our first family yoga class, but even before she had been officially introduced to yoga or learned the name of a single pose, she seemed to innately understand that yoga involves mindfulness, closing one’s eyes and going “inside.”  Indeed, the reason I felt a push to take her to class was because there was so much chaos going on in our family life then, I was reaching out for any way I could help her begin to learn how to connect to her “inside” place.  Little did I know that inside her 5 year old mind, she was already making those connections.

When I showed this same picture to one of Alex’s teachers at his specialized school for kids with autism, she also fell in love with it.  She printed a beautiful color copy and drew lines underneath for Alex to write a story about it.  He wrote:

“Hannah is my little sister, she is great. 

She is sitting down for yoga map.”

He wrote “map” for “mat,” not fully understanding why people use yoga mats or need anything special to help them sit like that.  But I think he also kinda “got” something else about the picture– that his little sister was tapping into a resource, something inside, that was helping her.  Thinking about it that way, maybe sitting for “yoga map” is fitting– because a map is supposed to help us get where we’re going, isn’t it?

The picture, with Alex’s neatly printed summary, is framed in Hannah’s room.  I hope that as she looks at it over the years, she’ll be reminded of all that is inside her that she can access any time to help with whatever is happening in her life on the outside.  And also that she will remember her brother (and the people who love her) recognize how special she is, whether she is interacting with the world, or going inside to find her own strength.

Finding this photo and writing this post has actually helped me feel more compassionate toward myself today.  I tend to be self-critical when I retreat inside and hide in my turtle shell.  But maybe this week, going inside has just been my mind’s way to connect with my map and move to where I need to be.

angry words and the mountain.

angry words and sharp comments
confusion, escalation, debate
misunderstanding stings
I feel shaken,
whipped around by the tones in your voice
 
heart racing and leaping
grasping at words as they fall away
down the sides of the mountain
that sprung up between us
it’s all wrong, my words twisted & thrown
… not what I meant, not what I mean…
 
frantic I try to put thoughts back together
and find my way back to the core
 
voices quieter now.
tears and a nod
a hug but it’s hollow
and panic is lingering
lonely and lonelier still…
there’s nothing to do but let the tears come
and stare out the window
watching the sky
 
… please help me come back …
…are you there? … are you gone?
 
it’s crushing, fast breaths
grief floods the insides
words scroll through my mind,
and I realize …
I’m talking out loud to myself
 
I try & I cry & I’m hopeless at this
fumbling, throwing out thoughts
nothing helps …
but I pound my fists on this mountain
as I cry & I try
desperate to find you again
 
the words lay in heaps on the ground where I sit
and the mountain looms large in the fore
I miss you, I’m broken
but finally listening…
I can find my way back to you now
 
I return with hands open, with words set aside
to hear your heart beat and your breath
my fingers tangle your hair, I let go and I soften
to feel the end of the journey apart
 
my back to the mountain
I breathe slowly once more
and give thanks that the climb didn’t break us
we found our way through, can we always do that?
I am grateful to simply be here.

A Lemon for my Water

autism home rescue 07131201Sometimes it’s the simplest things that make the most difference.  I’ve been trying to drink more water and the thought occurred to me our filtered office water might taste fresher with some lemon juice.  So I walked past my favorite coffee shop on the way back to my desk and asked for a lemon.  My girl Kristin over there, who’s always quick with a joke and a sly teasing comment about how high maintenance I can be, handed over a perfectly wrapped little lemon slice and said, “Hey that’s wrapped gold right there!” with a wink.  It was perfect.

To know and be known.  I think that’s what everyone really wants in life.  For people around to notice you, to consider you with kindness, to genuinely care.  I’m aware that I can be high maintenance and very particular when it comes to important issues, but really the things that make me most happy are so little.  A slice of lemon is truly gold to me today.

I’ve been thinking a lot about why it means so much to me to be known lately.  Perhaps it has to do with the space my mother’s death left in my life.  She certainly knew me better than just about anyone else, yet I often felt a tug-of-war for her attention.  She was busy and involved, running around experiencing life, traveling, doing good out there in the big world.  Sometimes I felt I had to jump up and down to get her to slow down and take notice of me.  And when she did, it meant everything.  Like the time she scolded me about parking in the neighbor’s space and I threw a little fit and left to run an errand.  When I came back, I was still tense and cranky, but trying to let the feeling go.  Mom hugged me immediately—she didn’t even wait until I put the groceries down—and said, “I know the parking space isn’t most important, the most important thing is we are here together.”  My crankiness melted away.  She knew me.

In everyday life, maybe it’s not just about feeling known, but also about my own perceptions of the quirky little things that come naturally to me.  If I see someone wearing earrings I like, I’ll comment on them and tell her so.  If I have questions about a product or service, I’ll ask.  If someone offers to help and I need it, I’ll try to let them know what would be most helpful in that moment—because I take for granted the fact that people are basically good and most folks aren’t apathetic, they actually want to know how to get involved.  I certainly don’t think I’m alone in what I notice or what I need and want, but I may be in the minority when it comes to the ability to open my mouth and comment, ask, or talk about elephants in the room.

Another one of my coffee shop friends, Amanda, made me an amazing cup of Hawaiian Coconut coffee this morning with just the right amount of soymilk and Splenda, exactly how I like.  I thanked her and commented on how good it feels to be known to someone else.  As she carefully pressed a white coffee cup lid onto my favorite ceramic mug from home, she replied that all her life she has wanted to be a “regular” at a local coffee shop and be able to walk in and have someone know just what to serve her.

And you know what?  For the rest of the day, I’ll be thinking about that and wondering what small part I might be able to play in giving her that feeling for just a minute.  Because sometimes that little “slice of gold” just means everything.

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“God bless our whole life together”

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Today I am grateful for:

  • Hope.  Plain and simple.  Sometimes I don’t realize that I’ve lost touch with hope.  I have all these quotes taped to my computer (“All is well, out of this experience only good will come” and “Optimism is the faith that leads to achievement” and “Leap and the net will appear” etc.) and sometimes I think I do have optimism and faith and I am trusting and leaping freely.  But then I realize somewhere along the line hope has actually slipped to the back of my mind, that I’m not as free as I had thought, there’s something heavy in the background sitting on a small but growing patch of anxieties.  When hope appears again, the relief I feel is like a cool breeze from the ocean on a hot beach day– I don’t realize how I had missed it or how sheerly *good* it feels until it comes again and reminds me.  This week I saw the movie Wretches & Jabberers for the first time.  It brought that feeling of hope back to me.  Not because of the story or the specifics, but because as I watched this film another window opened in my mind.  My proverbial “house” where God closes doors and opens windows became bigger and through the new open window created by these filmmakers came a gentle ocean breeze which awakened hope again in me.
  • Rainbows & nail polish.  I painted my toenails last night, each toe a different color like a rainbow, because Aubrey & I will be attending the Pride festivities in San Francisco.  Why something so mundane on a gratitude list?  Because I like pretty toes, because I can afford five different bottles of colors (cheap colors, but colors nonetheless!), because I like sandal weather.  And most importantly, because I live and work in a place where I can be open about who I am and I can show it on my toes.  How grateful I am for openness and acceptance!
  • Bedtime prayers & Alex’s words.  “Wretches & Jabberers” had a profound effect on the way I see the whole autism world.  One of the two main characters in that film, when asked what people with autism are like, responds:  “More like you than not.”  I know that.  Of course I know that.  But deep down that line stirred something in me.  It brought all the advocating, writing, fighting, learning, stretching, wanting, waiting, worrying, trying & planning & crying & wishing I do for Alex back to the realm of typical mother.  I do all that because I am mom, not because the autism needs to be solved.  The communication gaps need to be bridged, the awareness needs to rise.  But my beautiful boy is still– definitively– more like me than not.  Looking through this new, hope-full window last night, I cuddled up with Alex for bedtime prayers.  We said our usual stuff, we said thank you, we asked God to keep the people we love happy & healthy & safe.  I told Alex I am proud of him & I know how smart he is, that I’ve known it all his life, I have always believed in him and always will.  Then I asked if he had anything else to add to prayers.  He paused a minute, looked at me thoughtfully and said:

“God bless our whole life together.”

Amen.

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:~) Quote for the Moment (~:

autismhomerescue11241101“Through the practice of deep looking and deep listening, we become free, able to see the beauty and values in our own and others…”

~Thich Nhat Hanh

Can you see a fish in a tree?
How about the world through a child’s eyes?

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