It had been a long day home alone with the kids. School was canceled hours before the snow had begun to fall.  RM had been stimming excessively for days as the barometric pressure dropped and she took to grounding herself over every single task.  I was mentally exhausted as any parent would be. Carrying a nearly 60-pound child to the bathroom when they refuse to go takes a bit of energy.

SGM was released early and on his way home by 4pm.  [Side note: That has NEVER happened before, so I thank the heavens for this small miracle. Usually, he is gone for days whenever severe weather strikes the state.]

I went about my ritual of tidying up around the house knowing I had just over an hour before SGM walked through the door.  Same as every day, I use three Clorox wipes to clean the bathroom sink, knobs and toilet.  Then I replace hand towels throughout the house with fresh ones, I empty and refill our humidifiers, I put my coffee mug and spoon in the dishwasher, I brush my teeth, and if there is enough time remaining before SGM gets home, I put on a little makeup.

Because the roads were already slicked up, it was taking SGM a lot longer to get home.  This was hard for me.  Not because I worried that he wouldn’t make it home safely, I never worry about that, but because it was straying from my expected timeline of events.  It was very agitating.  I knew that I needed to find something calming to do before I got too upset.  So I bundled up and went outside thinking some shoveling would be a quick session of heavy work to calm my nerves.  As I was starting the first run of the shovel across the asphalt, I caught a glimpse of our neighbor next door.  Instant panic set in because I knew a conversation was coming but I hadn’t seen or spoken to this neighbor in more than a month.  What would he say?  Would he want to catch up?  Could I just keep shoveling and maybe he won’t say anything at all?

He yelled over, “Hey there! How’s it going?”  I cannot describe the wave of nauseous terror that washed over me in that instant, and I like this guy.  This is a neighbor I feel very comfortable around.  Some nights in the summer he comes and sits out front with SGM and me and we all chat and have a few glasses of wine.  But this, this is different.  This is unexpected and one-on-one with no buffer to carry the conversation when I don’t know what to say.  It was ugly.  I won’t bore you with the conversation, but it ended on a note of whose snow blower is bigger.  Awkward!

After the exchange, I quickly shoveled the two inches of snow that had fallen so far on the driveway and sidewalks.  It didn’t take too long, the snow was light and the heavy work was just what I needed to regulate my nerves.  I felt much better.

Not long after, SGM came home and we made it through the dinner hour.  RM was doing ok, but The Boy was chattier than usual and I just felt completely overloaded with noise for the day.  So, regardless of a blizzard or hurricane or tsunami washing over the Connecticut shoreline, I was going for a walk alone no matter what.  With my weighted vest. Damnit.

Watching me prepare for a nighttime walk in the snow would drive anyone to drink.  I noticed SGM had a glass of wine going at this point.  I need so many small items that I have a difficult time gathering everything up and getting ready to go.  I try to leave most items in the same place together, but things like my iPod and headphones are quickly separated throughout the day.  Finally, armed with my weighted vest, iPod, headphones, headlamp, balaclava, gloves, reflective sash, inhaler and cell phone, I headed out into the blizzard. Well, almost. I forgot to grab my boots.  On Take 16 or so, I set about into the night.

There was about six inches of snow when I left the house at 7:05pm.  Plows had not made it to most of the streets lining the neighborhood.  I have particular routes I like to take, especially at night.  I like the quiet at night.  I like that there are no faces to see.  Even passing cars in the daytime you can see the faces, and I always have to look at the faces.  But at night, I am free from that.  No one else about.  Just me, my thoughts, and my music.

The first few moments alone, in the dark, feeling the gentle squeeze of my weight vest and the compression of my thermal base layers against my legs and arms, I feel weightless. I liken it to space-walking.  As the minutes go by and I wander further from home, I think to myself how magical it must feel to just lie down in the deep pillows of the crisp, white, sparkling snow and just be.  Wrapped in nothingness and silent. Just for a spell.

Then the soft trickling of a nearby run-off catches my attention and I follow its song.  I come upon the edge of the water and I stare.  Even in the darkness I can see every twist and fold of the water as it slides over the frozen rocks below.  And I think how soothing for those rocks.

I am jealous.

But it is time for me to keep walking.

My cell phone rings.  SGM wants to know I am ok.  It has been more than an hour.

The snow is now nearly a foot deep now and my beautiful family is waiting for me to come home.

Blizzard Nemo, self-portrait.

Embracing autism is an evolution, both personally and throughout humanity.  It isn’t something that renders complete and total understanding in one diagnosis, one conversation, one book, or one autism community resource.

My daughter RM was diagnosed three years, six days ago with PDD-NOS/Autism Spectrum Disorder by a child neurologist who had known her for more than two years.  Her doctors had not suspected autism prior because RM had so many other medical and developmental disabilities due to her chromosome deletion (4q).  We simply needed more time to put the pieces of her puzzle together.

While in many ways her autism diagnosis (while my husband was serving his second deployment to Afghanistan) was painful and filled with bewilderment of what the future would bring, it was the defining discovery that would lead us to getting her the very best care and learning to accommodate all of her needs, not just medically but holistically.

In time, as parents, we evolved from wanting to fix her autism to instead understanding and accommodating her as an autistic individual.  And it did take nearly three years to get there.  But now, we understand that we are not to define her by limitations or weaknesses or labels, but to encourage her individual strengths and grow her tool box for her life ahead.  While doing so, our number one priority is that she knows without a shadow of doubt that she is LOVED for who she is and she is WORTHY of everything this life has to offer.

She shall know that each day here in this house, the Welcome Mat is out.  When she goes out into the world each day, whether to school or on an exhausting trip to the grocery store, she shall walk through our front door and KNOW she is coming HOME to her family who loves her for every bit of who she is from head to tippy-toe.

Because isn’t that what we all deserve?  What we stumble around this earth looking to find for ourselves?

Yes.

Well, my friends, I have some news.

I am also autistic.  I have Asperger Syndrome.

And when I went to my husband and the flood gates opened and I could finally verbalize all of the things I had struggled with throughout my life, let me tell you this man could have drowned.  But he didn’t.  He listened to every word.  He nodded.  There was a lot of nodding.  He braced us both through every wave of my self-awareness as they crested over us threatening everything he knew about his wife, his life, his family.  And when this storm of new information had passed, with a smile and a hug he threw down the Welcome Mat and said, “Welcome home.”

I hope that as I share more about this journey to Asperger’s through my series “Coming Home”, you will come along and put out your Welcome Mat, too.

I hope that you will embrace me as an autistic person who has discovered my own struggles and unearthed my own strengths.  In kind, I hope this helps others understand autism and autistic persons with more clarity and a broader lens.

I hope that you can support me as I take this new piece of the puzzle of me and celebrate how it fits.

I hope StimCity remains a place where we can welcome each other HOME, always.

Love,

Rachel

This is my daughter.  She is autistic. And let me tell you, she is F-ABULOUS.

Every day, she steps outside this door into a world that doesn’t quite understand her yet.  Where stares and whispers and outright insults assault her everywhere she goes.

Like the R-word. Retard.

She can hear you.  She understands every crinkle of your nose, every look of pity and she knows that your condescending tone of voice is more about your insecurity and discomfort than it is about her communication barriers.

Seriously.  The F-word is so much more appropriate.  Does this child look anything other than F-ABULOUS?

She may have challenges that are unique to you and I, but she isn’t complaining.  She is overcoming.  She hears the conversation and she is saying I AM WORTHY.

It is autistics like her that are changing the world every day with their determination and their spirit to change our perception of autism.  With a single smile this child commands that you respect her heart, her intelligence, her inner fabulousness that shines brighter every day.

RETARD.

That word cuts deeper and inflicts more pain than any other weapon possibly could.

Unlike a bullet that rips through flesh, that word shreds the soul leaving the kind of scars that never heal.

Each day she steps outside our door and into the world, she is asking you to embrace her.  She is expecting greatness of heart from you.  She is expecting nothing less than what we all yearn for on this earth.  Love and acceptance.

She deserves to live each day being FABULOUS, not continuously victimized by a word that is used by people so consumed by egoism they feel the need to protect their seemingly harmless right to wield their wordly weapons.

It has not always been easy.  It has not always been fabulous.  There have surely been people whose words have made the journey painful at times, and there have been so many more whose loving words have made it sweeter.  The sweetest have been the moments when just one more person chooses to never use those hurtful words again.

My daughter is heaven on earth for me, my husband, and her older brother.  The beauty of her transcends all boundaries of what words used to describe her could ever cage.

This is my daughter.

She is autistic.

Go ahead and drop the F-bomb, y’all.  Because she is F-ABULOUS.

Friends, there has been much discontent among the ‘autism community’ – which in my understanding is the correct term for *all* persons with an interest in autism to include parents, Autistics, professionals, educators, advocates, etc.

I have remained quiet and abstained from such discussions.  Not because I lack passionate opinion, but because my interest is in remaining a useful member of the community.  Even in advocacy efforts, I have attempted the impossible of not affiliating myself with one particular organization over another simply because of the intense conflict over the years, most of which occurred long before I came on the scene, and sadly seems to be progressing rather than waning.  What is most upsetting is that these divisive chasms make the possibility of unfettered autism unattainable.

That’s right – unfettered autism.  Because that is the wish I have for all who parent autism, live autism, educate autism, advocate autism and embrace autism.  It is also my wish for those who see autism as unpretty.

I feel in order to exist as a community, it requires us all to speak our own truths as we see fit in a respectful manner.  A manner which takes into consideration that none of us are an expert in autism.  Autism, and Autistics, cannot be contained in one definition, one area of expertise, one science, one belief system, one treatment plan, one advocacy campaign, or one collective understanding.  As in all meaningful exchanges, not only should we speak our own truths, we must listen and accept the truth of others.

To consider the impossibility for any forum to contain both parents and Autistics is as devastating as either group not considering the natural differences in each other’s experiences.  Such exclusivity of what some see as polar opposites of the autism community is as deadly as our country’s inability to come together and discuss gun control in a civil and respectful way.  It suggests that my own home is considered a battleground between my love as a parent and the individual rights of my daughter to be an Autistic.  Absurd.  What my home and my family live each day is no more open to debate than what an Autistic should be able to achieve in life.  The answer to both is whatever works.  [May I also add, that for gun control to be debated only by lawmakers, lobbyists and activists rather than including victims and citizens from our poorest city streets to the most affluent suburbs is equally ineffective.  I digress...]

When my daughter was born with a chromosome deletion, doctors said that if she survived at all her life would be limited.  She may never sit up, smile, walk or talk.  It was devastating news.  And as a mother, I can say this with sincerest honesty and truth – I wanted my daughter fixed.  The layers of what that means to me and my daughter cannot be experienced, understood or explained by anyone outside of us.  And it does not afford any person the right to judge that onion.  I can only touch upon the intent of such desire by saying that I chose for her to be cut open and given a life-sustaining feeding tube.  I chose for her to be cut open again and her heart repaired so that she could run and play as she grew older.  I chose these ‘cures’ to allow her the most opportunity for an enriching life – whatever that would mean for her.  As a mother, I feel that is my greatest responsibility.

When autism was included in her list of many diagnoses, yes, I wanted to fix that, too.  I wanted to learn everything I could about autism so that I could get RM the treatments that would afford her a better life.  I wanted her to be successful, to be active in our family life, to fulfill every ounce of potential within her to live her best life for her.  Never have I set out to change who my child is meant to be, rather as her parent I feel the responsibility lies in adapting to her needs and her autism.  That requires an open mind, an open heart and the building of a new parenting framework.  Simply put, this is not the parenting we expected and therefore as parents we have much to learn in order to grow with our autistic children.  It’s a process, a journey.  Sometimes we get it right, and there are times we fail miserably.  With hope and love, we try again.

Though I am no expert, I have learned enough about autism to know that my daughter is amazing regardless of the challenges she faces.  And though it has taken time for me as a parent to digest it, I know that autism is as much of who she is as the freckles on her nose.  It took time for me to learn this framework of parenting autism that differentiates between fixing a problem and growing a useful tool box.  It took time for me to unlearn the unpretty and embrace the unfettered.  It took time to expect RM to work hard for what she wanted instead of making excuses for why she couldn’t.  At her pace, with her own tool box.  For us, that meant advocating for an outplacement autism school.  Not to fix her, but to unfetter her.

As a parent, I am thrilled to learn as much as I can from self-advocates because I want my daughter to grow up empowered as an Autistic.  I have come to rely on the useful perspectives of those who choose to speak their truths and work within the autism community to bring us together toward a common goal of understanding the very real spectrum of this spectrum.  I rely on my fellow parents to walk this road with me and I rely on Autistics who have navigated the road ahead to guide me.

My wish is not for compromise of truths, but communion.  I wish for a universal agreement that the unpretty is unproductive.

I am trying.  Every day I am trying to grow my children.  I am trying to forge a better path for my autistic daughter.  I am trying to share our truth and I am listening in effort to understand yours.  Sometimes I get it right.  Many times I falter.  But I am trying.

This is my unfettered and sometimes unpretty truth as an autism mom.

This is my unfettered autism:

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