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.

Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

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I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

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.

for all mothers in less-than-ideal relationship situations

Some days I just feel compelled to throw out an entry in what I call my “required reading” category.  Today’s topic:

D.O.M.E.S.T.I.C   V.I.O.L.E.N.C.E

Big, bad, ugly words.  We like to think that those words don’t apply to us or to people we love because big, bad, ugly things happen in other families, right?  It feels better to believe– on this side of things– that we are somehow protected from crazy or impossible situations that we see happen to other people out there in the world.  If we thought “that could happen to us” every time we watched the news, then we’d be too fearful and anxious to survive daily life.  Makes sense to me.

Still, there are many, many people around us who are in difficult, destructive or dangerous situations.  Some are aware of their circumstances, their resources and their options.  But many are not. 

Because I am a woman and a mother, I’ve decided to address this post specifically to other women like me.  But domestic violence can happen to anyone, male or female, single or married, gay or straight.  Please be aware that although I’m writing woman-to-woman here in the interest of simple readability, whatever situation you– or your loved ones– may find yourself in, there are resources for you too. 

Here’s the truth about domestic violence in the United States: 

One in four women in the U.S. will experience domestic violence in their lifetimes.  It takes the average woman 7 times to leave an abusive situation.  Domestic violence affects women from all walks of life, all education levels, all socioeconomic backgrounds, all races, religions and sexual orientations.  It affects parents of typical kids and parents of kids with special needs. 

See:  The National Coalition on Domestic Violence (NCADV) fact sheet here.

Domestic violence is not just physical.  When one person exerts control over another, when someone is  threatened or harrassed or isolated from friends, when one person in a relationship controls all the money in the bank account, for example, or won’t let the other person leave the house when they want to, that’s domestic violence too.  Just because nobody physically harmed you, doesn’t mean harm hasn’t been done.

See:  Information from NCADV on psychological abuse here.

 

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Over the years, both personally and professionally, I have encountered many helpful mantras for coping with less-than-ideal relationship situations.  I share some of them with you here in the hopes that if you find yourself needing encouragement or wanting to help a loved one, something may resonate with you and encourage positive outcomes.
 
  • In healthy relationships, people don’t get punished for being who they are.
  • Just because someone yells and screams or makes statements in a loud, authoritative voice, it doesn’t mean they are right or that they are telling the truth.
  • Just because someone says, “This is the way it is!” does not mean it has to be that way.
  • When someone is being mean or abusive and telling you it is your fault they are angry, it is not your fault.  No matter what you do, you cannot control their behavior or reactions.  Even if you do “everything right” they may still be angry because their anger has to do with *them* not with *you*
  • Children are smart.  They know who really loves them, who has it together and who doesn’t.  No matter what someone else tells them about you, if you take a deep breath and focus on being the best parent you can be (and not feeding into the negativity coming from an abusive person), your kids will know what’s true.
 
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If you suspect a child or teenager is being abused or mistreated, call 1-800-4-A-CHILD or go to the Child Help website.

To find domestic violence resources (including shelters if you are in danger or support groups if you are concerned) in your state, click here or visit the Feminist Majority Foundation.

If you are seeking LGBT resources for domestic violence, click here for the Rainbow DV page devoted to information, links and support groups.

Local hospitals or women’s centers often have free counseling and/or support groups for women who have been victims of domestic violence.

Other helpful websites:

Eve Foundation: Ending Violence Everywhere

National Coalition Against Domestic Violence

 1-800-799-SAFE (7233) will connect you to safety resources in your area.

If you or someone you love is in a less-than-ideal relationship situation, there is hope for things to get better.  Please reach out for help, you are not alone.

Portia%20Nelson

:~) Quote for the Moment (~:

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In any given moment, the universe is primed to give us new life, to begin again, to create new opportunities, to miraculously heal situations, to change all darkness to light & fear to love.      ~Marianne Williamson

Sharing a few autism journey miracles

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…

Today’s Gratitude List

gratitude-rainbowspiral1

Today I am grateful for:

  • Enthusiastic people.  The kind of folks who see something happy & smile, who celebrate the big & small triumphs of others, who derive as much– if not more– joy from helping other people win than from winning themselves.  Kudos to all of you!
  • Gluten-free pizza from our local pizza parlor.  Yummy thin crust, tomato-basil with super fresh mozzarella… mmmm… ’nuff said.
  • Soy mochas.  My new favorite.  Served, as always, with a smile by my favorite coffee shop buddies.  I think I mention coffee often on here. … But then again, I’m not sure… Could you go check the archives for me please? 😉
  • A day where nothing particularly extraordinary happens.  Just a basic get through work, get through life, one-thing-at-a-time kinda day.  How grateful I am that I’ve nothing particularly extraordinary to write about!

manifesting

 

What are you grateful for today? 

Did you remember to remember it?

 

 

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