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!!!

 

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.

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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

I Want Underwater Horseback Riding Lessons– NOT!

autism home rescue 10091202When did advocacy in special education become such a battle?  Where exactly did we lose the forest for the trees and start fighting each other over what all of our children (whether they are “special” or “typical”) really need?  Today I read a beautiful comment by a friend and special needs advocate in response to an article in Philadelphia Magazine titled:  “Where All the Children Are Above Average.”  The article, which touched on special education challenges many families and school districts face, totally missed the mark when it came to accurately portraying special needs parents.  And my friend Rachel told them so.

Usually I stay away from hot topics– as you, my faithful tribe of readers, well know.  I avoid them because I’m not about dissecting the points of view or fighting the political battles.  Sure, I have my opinions.  I argue with the skill of a seasoned attorney when the situation calls for it.  And I’ve been known to hire seasoned attorneys to do the arguing for me when the battle becomes too emotional or energy-draining for me to handle on my own.  But the Philly Mag article invoked a different feeling for me. Although I’m not always particularly happy with the current state of our own family’s special needs battles, today I’m not drained, I’m not angry.  I don’t feel entitled to any more than anyone else may be– and indeed I never have felt that way.  Today I’m simply curious.

How exactly did we get to the point where some parent advocates get private horseback riding lessons for their autistic children, while other parents get lost in the system and get nothing?  And more importantly, what can be done to bridge the gaps and bring us forward (not back) to a win-win-win solution so that all kids get what’s fair and appropriate to give them a good shot at a healthy, happy life as contributing members of a peaceful society working toward common goals for the good of everyone?

(Please note:  Not knocking equine therapy here, I think it’s a great tool and helpful for many kids– just trying to illustrate how far apart two families with supposedly equal access to resources can sometimes end up.)

Seriously, people.  It’s not about my motherly wish to give my precious child everything up-to-the-moon and back.  I don’t want the latest and greatest “cure” for autism.  I don’t want whatever is next in line touted as the new “miracle” therapy (underwater horseback riding?  seahorse therapy? … there’s a thought…)  What I do want is a chance for both of my children to get the basics and what’s fair and appropriate under the current systems we have.  And I want to keep dialoguing and opening up communication between parents and experts and teachers and society-at-large in the hopes that new ideas will spark and we will all become a bit more solution-focused and creative for the sake of our children who will shape the future.

autism home rescue 10091203I advocate because I did not make my children who they are.  They were given to me.  The universe blessed me with two amazing individual people who will grow up to have completely different lives, choices, opportunities and experiences.  Alex (with autism) will have obstacles that Hannah (who is typical) will not have.  And vice versa.  As another of my inspiring mom friends said once:

“The real challenge is to raise the children we’ve been given.  Not the kids we expected to have.  Not the kids we wanted.  Not the kids we were, or our parents were, or society expects them to be.  But the actual children who are here.”

I am as encouraged and enthusiastic when Hannah’s teacher says:

“She is struggling with xyz subject right now.”

as I am when her teacher says:

“Hannah excels at this-or-that.”

because through that feedback I learn another characteristic of the ever-growing entity with limitless potential that is my daughter.  Whether or not Hannah has mastered a particular skill or is behind or ahead of her peers academically doesn’t matter to me as much as making sure she knows I believe in her, she has all she needs inside her, and no matter what challenges she may face in her life, there will be some way she will get through them.

Should I care if Hannah gets into the best college one day, or goes on to become a successful fill-in-the-blank– entrepreneur? doctor? teacher? advocate?  Probably.  But I don’t.  It’s just not as important as making sure she believes in herself and keeps trying.  I advocate for her in school because I want her to have the same opportunities her peers have to learn and grow.  With each chance Hannah has to learn a skill, with each discovery her teachers (and her parents) make about her inner workings, how she learns and what motivates her, she moves one step further towards making the world a better place because she will be able to combine her faith, her passion and her persistence to contribute something positive.

I advocate for Alex in the same way.  Just because he communicates differently from his sister does not make him less intelligent or less able.  With each experience he has, with each piece of his puzzle I learn, he too moves forward to fulfilling his ultimate potential in the world.  (Please see the movie “Wretches & Jabberers” okay?)

autism home rescue 10091201I remember a day long ago when I “woke up” to the fact that the world will view my two children– who have the same biology, the same environment and the same family structure– very differently.  All of us were at the playground.  Alex was silently going through a “circuit” he had created, a ritual way of playing which involved climbing up one slide, going down another, running to the steps, across the bridge and down again.  He was absorbed in his repetitive cycle and happily moving through it.

Hannah was tiny and unusually verbose, chattering away using words far beyond typical two-year old capacity, talking to another child near the climbing wall.  The other child’s mother approached me and smiled at their interactions.  Then she said:

“Oh my gosh, your daughter is so intelligent.  Listen to her talk!  You must be so proud.”

I actually didn’t respond at first.  I felt a bit confused by her comment, then curious and defensive as her compliment sunk in.  She didn’t know either of my kids.  But her assumptions were based on what she could see and hear– my daughter’s ability to express herself with spoken words.  The realization struck me profoundly that in order to help both of my children live healthy balanced lives, I was going to have to advocate for each of them in different ways.

Because it wasn’t about teaching the rest of the world that Alex can understand and think the words, or that Hannah had the ability to create complex patterns and remember them as her brother could.  It was about making sure their inside potential didn’t get lost or run over or negated before they were big enough and brave enough and well-equipped enough to shout it to the world themselves.

Alex close upParent advocates are generally not selfish or entitled or asking for or expecting too much.  They don’t talk about their kids or make requests or push for resources because they are anxious or greedy.  They simply are doing their best to raise the kids who were given to them.

That’s important to all of us.  Because doing our best in good faith allows us to build better communities together.  As my advocate friend Rachel wrote in her letter to the editor of Philadelphia Magazine:

“Usually what is good for the individual child is also good for the group.”

Parents of children with special needs advocate because we have no other choice.  These are the tasks we’ve been given, the children with whose care we are entrusted.  None of the parents I know would change their children, but all would remove the obstacles their children face in order to give them the opportunity for a healthy, productive life.

Aren’t health, productivity and contentment key ingredients for a functional, peaceful society?  When will the day come when we don’t have to fight against each other or the institutions, but we can all work together to create the win-win-win for all of our children?

I will speak up for my children until they are big enough and brave enough and well-equipped enough to advocate for their own opportunities in the world.  Because one puzzle piece at a time, one chance at a time… one kid at a time who creates a new way to help, who finds a solution yet undiscovered, who inspires a positive change…  that is the only way the world is going to get better for everyone.

bigger, better, even more wonderful!

abundance of purple flowers

I am bursting with gratitude today and I have some exciting news to share!  Autism Home Rescue is expanding and we’ve connected with some awesomely inspiring writers who’ll be sharing their thoughts and insights right here on this very page.  Pretty nifty, eh?

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Stay tuned for our first-ever guest post on Tuesday 

by Caroline McGraw from A Wish Come Clear

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One of the greatest joys I’ve experienced since beginning this blog is the opportunity to connect and dialogue with other parents, professionals, caregivers and new friends.  This online community has not only given me hope when I’ve most needed it, but your stories, insights, support, humor and encouragement have sent good karma ripples out into the world and have helped countless other families like mine.  And as always, I am oh-so-grateful to you!

Caroline McGraw has a unique perspective on special needs and autism, and a gift for bringing the truth to light in her work.  Please stop back next week to read her very special post.

All best wishes for a peaceful weekend!

manifesting

… a fish in a tree…

 goldfish tree reflection

Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.

~ Albert Einstein

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About a week ago I saw this quote for the first time.  It struck me in such a profound way that an entire expanded blog post has been wandering around in my head since then, unpacking & rearranging & dissecting & analyzing & marveling at these words.

fish_in_a_tree_by_itsmebrownmindpopper-d2ztpxtA fish.  With a tree.  Climbing, not climbing.  Pondering the situation.  Wondering maybe why the heck someone would expect it to climb?  Maybe a slightly annoyed fish waiting for someone to recognize its fins are for swimming.  Like, duh!  … Or maybe a fish not really caring about trees, just being a fish and being content.  Not caring if someone else judged its ability at all, as long as it got the water it needed to live.  You know what I mean?

Or are you staring at the computer screen with your mouth hanging open, thinking maybe I’ve completely lost my mind?  Well, that would be okay too.  It’s all good, really it is.  See, it comes right back to the beauty of that quote in the first place:

We judge because our minds are constantly trying to make sense of our world.  Einstein’s quote is perfect to me because it clearly illustrates how ridiculous and imperfect our judgements of others really are, and then gives a gentle reminder of our silliness and sends us back out into the world to look at others through a new lens.

456088-sandy_cheeks_squirrel_largeDid I think that fish could climb a tree?  Did I expect it?  Was it fair?  Or should I set up a nice little oval aquarium and invite it to show me how it can swim better than a squirrel?

Can you see it?

I smile as I write this because I can see it, and I can feel it.  And just being able to do that brings a whole universe closer to me somehow.  I believe there’s a higher power who created the world, and I believe that everyone is special and important, every living thing has its place, things happen for a reason, and that we have lessons to learn in life.  Seeing that fish, imagining that tree, makes me realize the immensity of ALL of this.  I’m only one part, and me with my own judgements and ways of seeing the world…. well, maybe I have a lot more to learn, too.

Are you with me?  So to take this quote one step further into my life…

fish-and-monkey-jarsMy son is a fish.  He can swim like nobody’s business.  He loves the trees– all the typical stuff– but he’s not good at a lot of it.  For years I thought I’d find the “cure” that would change his fins to feet, would make him be able to survive without water, so that he could live in the trees with his little sister (whom I’ve always affectionately referred to as my “monkey”) and be happy.  Then I realized the key to everything, the key to really being a good mother (in my humble opinion) was to recognize his fishy-ness, to get him what he innately needs for the way he was created to live.  So that’s what I’ve tried to do.

But about a week ago, Albert Einstein reminded me that I missed another important part:

If in my world of trees, I had missed an obvious point entirely about the abilities of my little fish and about my own judgements of others, then what else could I learn from a fish?  What else was I missing about what fish *can* do?

flying-fish

As often happens in my life, an answer to these silent questions swirling around in my curious brain came to me in a truly beautiful and touching way.  Alex’s former ABA teacher Steph (of “Tigger Takes a Swim“) emailed me out of the blue yesterday:

“I’ve been thinking about Alex a lot lately… I just started doing consulting work and I’ve been going back over my years of doing therapy [with kids] and I keep coming back to him. … I don’t think [that’s] because of what and how we taught him during his [early intervention] days, but more about what he taught us and reminded us. …

“Alex taught me that answers aren’t always in books.  He taught me that patience and love get you a lot further than sitting at a table and doing things by the rules.  He taught me that sometimes you have to look beyond the obvious and search for the deeper meaning…  And even after searching if you still can’t find something, then just act goofy and laugh because laughter makes everything okay, at least for a bit.

I owe you a much needed thank you for allowing me to be a part of his life and learn from him.  I honestly believe it has taught me to be the best I can be in my job and that when A and B don’t add up, then maybe they aren’t supposed to so just move along!  I hope beyond hope that he is doing well in his new environment and learns all he can and continues to teach and inspire those around him.” 

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It seems my beautiful boy fish is already doing much more than I had expected — he is making impressions, teaching lessons, causing people to pause & reflect & remember.  And because of him, lives of other little fish have been and will continue to be changed for the better.

Thanks, Steph, for showing me the deeper meaning of my new favorite quote.  And thanks Alex, as always, for swimming to your own beat.

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… my thousand words for today …

… because that’s what this picture is worth:

alex on playground

This is Alex looking out over his new playground, content with his current circumstances, asserting his independence, looking more confident and comfortable.  This picture is my autism inspiration piece for today.  Although Alex still asks to come home, the residential staff and teachers report he enjoys living with his new friends.  I am grateful for that.

Residential treatment, introductory post…

Well, here we are folks.  December has been an eventful month.  When Alex was diagnosed with autism several years ago, I discovered a whole new world that was bigger than the “typical” world where I had expected our family would live.  A few years into “autism life,” when I would meet with moms of newly diagnosed kiddos, I often used this analogy while chatting together in my kitchen over a cup of tea:

  • A baby is born and there are all these expectations we have.  It’s like everyone is crowded into the kitchen, oohing and ahhing over the new addition, and happily chattering about how wonderful it is to be right here in the kitchen.  No one wants to step outside of the kitchen for some odd reason because they firmly believe *everyone* is living right in here. 
  • But if you think about it, deep down everybody knows there is a whole house surrounding that kitchen.  It’s just that new parents are afraid to step outside of it.  No one really does it on their own, until someone else pushes them out the door into the dining room.  And once that happens, once we get pushed through the door, we discover a whole house– essentially a whole new world– outside that comfortable kitchen.
  • And it feels better to have these other rooms to live in.  It’s more comfortable than being crowded into the kitchen with everyone else.  But there’s no way to explain that to someone who’s still living in the kitchen because they feel warm & comfortable & safe in there.  Someday something will happen in their lives to make them leave that comfortable place and explore their own house, their particular life circumstances.  And then they too will discover the whole world outside the kitchen of which they are already a part.

My new friends, and the people who looked to me for advice since I was just a bit farther along on my autism journey than they were, often told me they found that analogy comforting.  Well, guess what folks?  I’ve got something new to report:

  • Not only are most people not living in the kitchen, not only is there a whole comfortable house we families with special needs kids have to inhabit– but there are *entire villages* of people, whole communities beyond our homes and what is most familiar!

For the last few years, my family has lived essentially in crisis of one sort or another.  We always managed to find the next service, the next step, the new teacher, the better intervention.  But at some point, I began to feel sort of lost and my faith wavered.  My son’s autism journey escalated to a crisis point where I couldn’t clearly see the next steps.  And I got scared and felt alone.

On the other side of that, I recently discovered that what I really needed to do to re-frame our current family reality was simply to go back to the kitchen analogy.  I had stepped outside that comfortable room years ago, but this month I walked out of the whole big house.  And what I found was a village community safer, kinder and more loving than I could have imagined. 

I share my experience with you here in the hopes that if you or someone you love ever needs to leave all that is familiar behind and take a similar leap of faith, you will find comfort knowing others have relocated, re-established themselves & their families, and have found hope in unexpected circumstances.

Residential Treatment: 

Day 1:  I drive to the clinic to meet Alex’s Dad and transport Alex to his new living place.  I feel tears well up as my car automatically navigates to the hospital I’ve visited nearly every day for 6 weeks.  I think:

“I hope the next place is good.” 

I wonder if we’ve made the right decision.  Logically, I know it is the best course of action.  I try to keep my emotions in check, but as I pull into the hospital parking lot, I start to sob.  I park, grab my phone, and begin calling my “autism network” one by one.  No one answers until I reach my sister-in-law, Adrienne.

“Am I a good mom?”  I ask, my voice shaking.  “I mean, I know I’m a good mother to Hannah, but I don’t know how to do this thing with Alex.  I need to know– really truly– am I a good mom for Alex?  Am I doing the right thing?  This is so hard…”

Without hesitation, Adrienne– who is a supervisor for child protective services two states away and who has seen every family situation imaginable– replies:

  • “You are the best mother for Alex.  You are making the ultimate sacrifice and so is he.  You are giving up control to someone else so that Alex can truly get what he needs.  It’s not something you want to do, it’s the hardest thing a parent can go through– to let go of your child, to let go of the dream of wanting him at home– but this is the best way to get him the things he needs that will help him.  That makes you the best mother.  And stronger than you know.”

I hang up the phone and take a breath.  A voicemail has come in from Elsie, another mom on a similar journey:

  • “Alex has a higher power and this is part of his journey.  You have dignity & grace to be his Mom.  Think of Louise Hay’s message– she wants you to transfer love and healing to him, and that’s what you’re gonna carry:  love and healing.  Just pass that onto him, because that’s what he needs from his Mom right now.  And you have that from the universe because whatever you put out is what you’re gonna get back.  You put out the love, you’re gonna get love back.  And I love you, I’m here for you.  I’m sending you love, healing, warmth, serenity and peace.”

Another breath, I’m as ready as I’ll be.  I meet Alex and Daddy.  We drive in separate cars to the residential treatment facility.  Alex rides with his Dad.  Once at the facility, we’re escorted into a small conference room for the official intake.  As inevitably happens, Alex wants to roam and Dad goes with him to help him explore and acclimate.  I’m left alone with the very sweet social worker, nurse, and various other professionals who drop in to make introductions.

Everyone is nice, they smile and they are patient.  They answer my questions.  They take the piles of paperwork I’ve collected.  They copy insurance cards.  They ask many questions and seem pleased to get the information they need.  I think:

“This is my baby!  I want to tell you everything!  He is my life, my heart is breaking, please, please, please hear everything!”

But I try not to talk too much and to only answer what they ask as concisely as I can.  I try to trust the process, and to not cry.  I fear that if all the intense emotions I’m feeling come flying out, I’ll lessen my credibility somehow and when I really need them to listen, they may not hear what’s important.

Some of the questions are hard:

“If Alex is ever in a situation where he is touched inappropriately, would he tell someone?  Of course, we take every precaution to keep all of the residents safe, but this is important information for us to know in case one of the boys may unintentionally cross a boundary.”

I talk about Alex’s expressive language, what he is capable of telling us and the needs he usually does or doesn’t express.  I tell the nurse Alex does not usually tell us when he is hurt or hungry, but he will answer direct questions.  To the professionals I appear to be coping well.  Inside my head, there is a mother on her knees crying and pleading loudly:

“Please, please, please take care of my baby! 

…my baby, protect my baby boy…” 

Intake finishes.  We go to Alex’s new “home” and see his room.  As we walk in, for the first time I meet kids exactly like him.  Almost like the boys at Alex’s school, but with one difference– all of these energetic, enthusiastic guys are at the same place  for essentially the same reason:  They have needs that could not be met at home. 

Alex’s roommate Anthony is talkative & perceptive like Alex.  Another boy David melts my heart with blue eyes & a big hug.  Still another, Luke, bounces by telling a staff member about his family.  We play with Alex on the playground, we meet the staff members on the unit.  I start to feel okay, I think maybe this situation will become okay …  

Each person I meet really “gets” these kids. 

Day 3:  Aubrey, Hannah and I visit Alex for the first time.  We hang out together in a special family visit room.  Alex is his usual distracted self, I feel a little anxious.  Hannah sees a small bouncy ball I included with Alex’s clothes and toys.  She cries that it is hers and she wants it now!  I try to be calm and understanding, but I am less than patient with her.  I think to myself she has rooms full of toys, Alex is living away from home among strangers, let him have the ball for goodness sake!  But I know why she protests, and how much she has given up over the years.  I explain the importance of sharing some things, and then I keep quiet.  Aubrey helps Hannah feel okay.

Day 5:  I visit Alex on the evening of his birthday.  He is wearing comfy pajamas, his favorite movie “Alvin & the Chipmunks” is playing on the TV in the common room outside his bedroom door.  There is a Christmas tree with colored twinkle lights sparkling.  I am amazed at how calm I feel.  I tell the Treatment Manager who runs the house how reassuring this feeling is.  I am grateful. 

Day 8:  We visit Alex at his classroom and then go with the class to the gym building for their annual Holiday Bazaar.  I learn that the facility is active and involved in the community in many different ways and I realize that working together they are able to provide amazing experiences for the kids there, in ways I had never imagined.  Their work not only benefits the kids, but benefits many families around them who are living in the land of the typical.  My kid is part of a community that educates, empowers & makes a difference.  More gratitude.

Day 9:  We celebrate Alex’s 11th birthday at his new living place with Grandma and Big Pop.  We decorate the play room.  Alex is happy to be hosting a party for his new friends.  The best part for me is being able to share pizza and cake with all of the kids and staff.  I am so grateful Alex is in such a supportive environment.

Day 15:  We attend the annual Holiday Show.  Alex stands on stage, he participates.  My eyes well up as each class sings & performs.  No matter what their challenges, each individual kid’s strengths are highlighted.  I sit with other mothers who share the same scars as mine, who have the same stories, who are walking just a little bit ahead on the autism journey.  They say to me:

“Only two weeks?  You’re doing really well!” 

They offer their phone numbers, they give hugs as freely as their amazing kids whose smiles can capture hearts as easily as my Alex’s grins.  I don’t even know how to tell these parents how much this connection with them means to me.  But I suspect they already know.  I drive home cautiously optimistic and begin to envision a new year….

… to be continued…

“Honey, come quick before you miss this…

… it’s time for that show at the house next door!”

(Maude grabs popcorn, pulls up a chair for her spouse Donald to sit with her at the window, and settles down for the latest exciting installment of “Autism Home Rescue:  At Home.”)

The WordPress topic today, in case you haven’t already guessed, is:  Write a story about yourself, told from your neighbor’s perspective.  Oh boy, this should be a fun one.  I’m not sure I wanna know what our crazy household actually looks like in reality to our neighbors (whom we’ll call “Maude and Donald” for confidentiality purposes.)  So for your reading amusement today, I’m just gonna make this one up.  Ever see the movie “The Burbs” with Tom Hanks?  Well, picture kinda like that.  But, um, we’re not axe murderers or anything.

Maude:  “Come quick, I don’t wanna miss the beginning like we did last week.  I was all confused when the mail truck showed up twice in one day and Hannah climbed out the back.”

Donald:  “All right, all right, I’m hurrying.  Did the au pair arrive yet?”

Maude:  “No dear, the au pair left screaming, remember?  There are three new babysitters now.  Or maybe four.  Wait– someone is coming up the walk.”

lara_croft_001Maude & Donald wait and watch as Dacia parks her car in front of the house in Superhero Parking Space #1 at exactly 3:00 pm and glides up to the family home.  Dacia is gorgeous, confident and ultra-prepared.  A behavior specialist and autism-expert-extraordinaire with long brunette locks and a smile that could charm the most hardened criminal, she was brought in after the infamous “window-breaking episode” to kinda clean things up.  Picture Lara Croft only happier, minus the guns and the sarcasm.

Dacia unlocks the door just as Alex’s bus is pulling up.  The bus door opens and

**freeze frame & rotate to the side to see Alex in all his hyperactive, OCD glory in mid-leap flying off the school bus onto the walkway**

Dacia:  “Hey bud!

Alex:  (singing loudly)  “Daaaaashhhaa!” (as he runs past her into the house)

The door closes.  Alex announces “RADIO!” and in about 30 seconds loud gospel music begins pouring through the walls.  (Last week it was country music, the week before jazz and rock.)

Will-Smith-Men-In-Black-383341In the meantime, a black SUV zips expertly into Superhero Parking Space #2.  Cue spy movie background music & slow motion effect as TSS Jack (Wraparound Support Services Guy) exits his vehicle & whips off his sunglasses.  In a flash, he arms himself with all the tools needed for whatever he may encounter inside the Home.  Positive reinforcers in hand, Jack strides confidently to the door.

Alex opens the door:  “Jaaaaaack!!”  (at the top of his lungs)

The door closes again.

Donald:  Those two, they’re like the dream team.

Maude:  I know, right?  Last summer after that cliff hanger episode when the chair flew through the door I was kinda worried.  About time they brought in some extra reinforcements–  hey, who is that?

charlie_s_angels_ii_-_full_throttle,_2003,_drew_barrymore,_cameron_diaz,_lucy_liuAshley arrives and parks in Superhero Parking Space #3.  She’s the newest addition to the Team, beautiful & smart with a calm but fun outlook on life.  Picture Cameron Diaz in “Charlie’s Angels.”

Donald:  That’s the new one, right?  Think she just finished her Agent training at the University Campus downtown.

Ashley enters the house.  Even over the blaring music, Alex can be heard screaming “Ashweeeeeeee!”  Through the windows Alex can be seen zipping back and forth, moving lights and building supplies from room to room.  Before long, construction has begun on the largest Rube Goldberg contraption known to man.  Ping pong balls and marbles bounce around on ramps and spirals, flying from room to room, upstairs and down.  The three superheros move with Alex through the house with the precision of a team of ninjas as Alex screams gleefully “Marble run 3000!  The best marble run ever!  Donnnnn’t touch!!”

Mystery%20machine%20cartoon%20versionThe clock ticks 3:30.  A beaten up little 3/4 minivan swerves into the driveway on two wheels.  Mom hops out and runs up the walk, 27 bags in hand and 15 minutes late as usual.  Alex’s teachers from school, whom we’ll call Kate and Rachel, meet Mom at the door.  Kate and Rachel could be the 2nd and 3rd Angels to Alex’s “Charlie.”

Donald:  I don’t know how they do it, but whoever casts this show has some talent.  Did you ever notice how they all look like movie stars?  That little boy just surrounds himself with gorgeous women.

Maude:  (dreamily)  Mm hmm.. (mutters under her breath)  I kinda like Jack

Mom, Kate and Rachel enter the house.  As the door opens, more screamed greetings followed by Alex announcing “QuesadiwAAH!”

3232_Mexican_PuebloMaude:  Everytime this commercial comes on, I just feel like dancing.  (Maude & Donald chuckle as a lively Mexican theme plays and Alex ticks off the recipe)

*insert scrolling recipe subtitles here*

Alex:  Torteewas, chicken, cheese.  Lettuce shreds.  Salsa.  Beans.  …  Beans??  Dacia, get some refried beans please!  Go to store, get beans, okay?

Dacia:  Okay, bud.  Let’s write the list for Mom.

Alex and Dacia construct the shopping list, which now includes 3 more desk lamps, an 8-pack of lightbulbs, every item in the Mexican food specialty aisle at the grocery store, the “magic toy” (apparently a “classified” gizmo of which no one on the entire team has any knowledge) and gluten free cookie mix.

blue laser beamMeanwhile, Mom, Kate & Rachel conduct a Top Secret meeting in the next room where they are developing plans for the most Amazing Home Program known to man.  Papers shuffle, complex charts and graphs are passed around the table, heads nod.  A nifty 3-D blue laserbeam display hovers above the table for a minute, then disappears.

Kate:  And that.   Is how Alex will load the dishwasher after dinner.

Mom & Rachel high five as big smiles all around radiate an immensely glowing light out through the living room window.

cute_tiara_fairy_princess_poster-p228420657750043199t51d_400The door opens again.  Alex and his Team exit and make their way to the bus stop, then return a few minutes later with Hannah, who wears a diamond tiara and brightly colored princess gown over her school clothes.  They are joined by another Behavior Specialist who looks extremely serious and professional, kinda like an FBI agent.  Hannah carries the 17 new stuffed animals she has accumulated throughout the school day.  She updates Dacia on all the animal stats.

Hannah:  This one is Spot, he’s a dog.  And this one is Sneaky.  Here’s Snow White, Marshmallow, Gigi & Fifi.  Fifi is an ox, but her mommy is a Moose.  They got left in the toy bin, but Fifi climbed to the top– she’s a survivor– ohmigosh, she was so sad because her mom was still at the toy store until I rescued her and took her away from the pig.  Oh– and this one is Grand Central Spacement.  She’s a golden retriever….

Salsa_DanceMom opens the door and The Home Team disappears inside the house.  Lights begin to flash off and on, in a kinda bizarre morse code.  Alex sings, “Ready or not, here I come!” as another voice calls out, “Dinnertime!”  The theme song of “The Incredibles” begins to blend in with the radio, which is now blaring salsa music.  Mom, wearing her own sparkly tiara, can be seen dancing around the living room with Hannah.

A TV announcer’s voice echoes above the neighborhood:

“Will the home team unlock the secret of the ‘magic toy?’  Are there really enough quesadilla fixings to last the week?  Will Grand Central Spacement ever find her mommy dog in the bottom of the toy box?  Tune in next week as we hear Alex say, ‘Mommmm… I love you!’

Maude picks up the empty popcorn bowl and closes the mini-blinds.  She smiles at her husband.  

“Whoever would have dreamed we’d find such entertainment right in our own backyard?”

 

Today’s Gratitude List

DChitwoodGratitude

Today I am grateful for:

  • Snow.  Let me clarify this since I live on the East coast of the U.S.  I am grateful for new snow that falls in big pretty flakes at night & sparkles in the moonlight when I am home in my pajamas and don’t have to drive anywhere.  I am grateful for snow shovelers– like the amazing kid whom I met two days ago (see the next item on my list)– who become part of my village when they knock on the door and offer to take care of our home’s big corner sidewalks.  And I am grateful for all the snow-plowers, road-salters & transportation… um… “specialists” let’s call them, who help us get “back to the schedule.”
  • I am grateful for Adam, who helped to clear out the driveway & shared a cup of hot cocoa.  Adam, a neighborhood kid, knocked on the door & introduced himself.  We negotiated a price, he went to work.  The next day he was back to help again.  He mentioned he also babysits.  When I asked “Do you know anything about autism?” he replied, “I’ve got two disabilities myself” and went on to share some of his story.  Turns out his mom is one of my favorite special needs advocates, a woman with an amazing outlook on life who has encouraged me through some of my toughest challenges.  The world became smaller– and much more “walkable” — yesterday because of that encounter.  Thank you Adam!
  • I am grateful for the bit of flexibility my son is able to muster on days when his entire schedule is thrown off by closed schools, rearranged routines & upside-down family situations.
  • And last but not least, I am grateful for my new favorite piece of jewelry:  A homemade paperclip necklace that Hannah presented to me two days ago.  I bet if I made a whole line of these things, I could fund her college education.  But for now, I’m the proud owner of the one and only piece in this original “Paperclip Jewelry” collection.

paperclip necklace

What are you grateful for today?  Write it down & share it!

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