Wednesday, April 10, 2013

Autism: It's How We Roll...and Spin...and Rock...and Whine...

The woman at the desk smiled at me as I came in, then her smile wavered.  I saw myself  through her eyes; a gaunt, hollow-eyed woman balancing an overstuffed diaper bag and a beautiful eighteen-month-old child in her arms.  As she rose to speak I stepped forward and 
interrupted tearily.

"My name is Jen.  Please don't tell me I'm overreacting, please don't tell me I'm a nervous mother, and please don't tell me you don't test children before they are three.  This is my son M and we are NOT leaving until he is tested."

The woman stared at me blankly and then slowly backed into the outer offices.  As I settled into the scratchy chairs with my sleepy son I could hear the anxious whispers behind the door.  Four and a half hours we waited, until finally a diminutive woman with a lilting voice and a gentle smile came out to greet us.  Her name was Dr. XXX and she was the one who first spoke the words aloud:  "Your son has autism."

        Oddly, the first feeling I had was one of relief.  FINALLY someone believed me!  For months I'd been told how lucky I was to have such an easy child; content to rock in his swing and hum as he gazed at the ceiling fans and rain-streaked windows.  In my heart I knew there was more to it than that and at long last there was confirmation.  I walked out of the office armed simply with a pamphlet for Early Intervention services and a reassuring hug; from then on it was all up to me to rescue my baby.

Immediately upon returning home I loaded M and his twin brother J into the stroller and headed to the library where I proceeded to check out every book on autism that had ever been printed.  I spent long hours rocking the boys in front of the computer as I gradually earned my PhD in autism research from the "University of Google".  My husband and I quickly 
learned  spending $100 an hour on RDI and ABA therapists would not be an option so I taught myself everything I could; staying up until 3am listening to Stanley Greenspan lecture online and printing homemade PEC's on my computer.  

Not all of our endeavors were successful.  A friend told me how her daughter increased her vocabulary after supplementing with anti-virals and EFA's but this combination only proved to make M more "stimmy".  There were times that I felt I could almost see him slipping further and further away.  Those were the times when I would think to myself, "Stay with me, M. . .just stay with me a little bit longer til I can figure this out.  Please."  I threw every conceivable therapy against the wall to see what stuck. Speech therapy proved meaningless initially while occupational therapy turned my introverted little boy into a laughing, playful child.  The hours I spent with M kneading dough and digging in piles of rice and dried beans helped his sensitivity issues more than anything else, and we soon learned how to make even the most meaningless daytime tasks into an opportunity to practice and learn.

As happens often with families of special needs children, the challenge proved to be too much for my husband, and he sought a "less complicated life" with another woman.  My divorce was emotionally and financially devastating, but opened doors to me as well.  I researched schools which would better meet the needs of my sons (exceptional services were woefully lacking in their present district) and we moved to a neighboring district that had a flagship program directed at children with high-functioning autism as well as music and art for my creative son, J.  The rent was higher here, but if it meant taking the bus and living on Ramen for a while, I did what I had to do to get them into this district! I also knew that it would be impossible to raise my children on the paltry child support I received, so it was time to take my experience with my children and my passion for education to the next level and return to school.  I completed my Masters degree in special education last year and am planning to start the doctoral program next year.  But nothing I learned from a book or a desk has taught me more than the simple act of being a mother to two such miraculous children.  And nothing I know as a professional can do jackshit about the day to day confusion, frustration, and misunderstanding surrounding mothers of children on the autism spectrum.

     First of all, let me set the record straight.  Mothers of children with autism are not perfect, selfless angels.  We are not martyrs.  We are not saints. Although any mother will tell you in all honesty that she loves and accepts her child, if you asked if she loves the fact that her child has autism she'll probably look you in the eye, blow her sweat-stained hair out of her tired face and say "Are you fucking KIDDING me?" I didn't choose to be a mother of a special-needs child.  I am not heroic and brave.  If I could go back in time and make a choice, you can guaran-frickin-tee you that I would not have said, "Why yes, God...a child with autism would be delightful".  But it was not my choice, nor was it M's.  Together we have learned to navigate the maze of autism and let go of the guilt and the blame and trust that maybe, just maybe, there was a reason why God saw fit to intertwine our lives so intricately.  And parents of children with autism are not "stronger" or "braver" than any other parent; we are simply doing the best we can with what we're given, and sometimes that's enough, and sometimes it isn't.

     And contrary to shows like "Touch" and craptacular films like "Mercury Rising", children with autism are not all altruistic, ethereal beings with cherubic smiles and pristine intentions.  Children with autism are simply that:  They are children. . .with autism.  And like any other child, they can lie, and tease, and annoy the ever-loving shit out of you; so most of the time parents find themselves asking "Is this an autism thing, or it this a typical 'my-kid-is-being-a-pain-in-the-ass' thing?"  Sometimes a cigar is just a cigar, Freud.

      Autism and myriad other emotional and intellectual disabilities have their own unique set of challenges; largely because autism  is what's known as an invisible disability.  Because my son is not in a wheelchair, or holding a white cane, he is simply viewed as "odd" or "weird" and as such, others view his behaviors as a direct reflection upon my OBVIOUSLY sub-par parenting skills. . .which they are quick to point out to me. . .three guesses how well THAT shit flies.  But, you learn to choose your battles wisely.  They old lady rolling her eyes while my son goes postal in the middle of Target?  Meh. . .not the hill I want to die on, Soldier.  But the two grown-ass men teasing and mimicking my son's high-pitched laugh at the community pool?  Oh, it is ON like Saigon, motherfucker.  You don't MESS with an autism mommy.  We are tired.  We are angry.  And we have nothing to lose.

        But while each of these slights and hasty judgments cut me to the quick, all s well in M's world.  He is a happy-go-lucky, carefree child.  I carry the weight of M's diagnosis as I willingly carry every burden passed onto my child; with a strong back and a loving heart.  If it is I that spends sleepless nights worrying about the latest "stim" or tic or behavior or weeps in the shower because of an unkind word or negative report from school then I will gladly embrace that in exchange for the honor of being the mother of such an exemplary human being.  It is enough.

        Being a mother of a child with autism means being ever-vigilant of any new stimuli in your child's environment.  It means spending your days and nights hunting down just the "right" brand of peanut butter he'll eat, or cutting the tags out of her clothing because the feel of them sets her off.  It means listening to the ham-handed advice and latest Witch-Doctor-Quick-Fix-Jenny-McCarthy douchebaggery some well-meaning soul passes on with a smile.  It means being flexible every single second of every single day because even with the best of intentions and the most intricate planning, a fire alarm or flickering light can turn a simple trip to the mall into a child's personal Vietnam.  But most of all, it means you never take anything for granted: not a smile, or an utterance, or even the briefest moments of eye contact.  You recognize the small victories, and celebrate them with all your heart.

      My son M is bright, and empathetic, and has manners that would make Emily Post look like Larry Flynt.  He is a prolific artist with the singing voice of a choirboy and a natural affinity for sports.  He loves math and meteorology and airplanes and classical violin and memorizing Bible verses, and I truly believe that this world is a better place simply because of his presence.  There were many times I wished for a "cure" that panacea that would make M "normal" and then I realized that most "normal" kids can't recite the entire libretto from 'Wicked' from memory, or do long division in their heads, or create a map of the United States freehand after seeing it once.  Trust me, "normal" is highly overrated.

      Today my son M and his amazing twin brother J attend fourth grade together. M has an aide throughout the day and receives daily assistance in speech, social skills, and behavioral management. We still struggle with his ability to interact with other children and his echolalia (reciting SpongeBob episodes verbatim is a favorite past time!), but with 
love and guidance he is blossoming into a happy, outgoing child.  I am finally able to relax a little and know that M is progressing at a slow and steady rate.  I am finally able to pursue my own interests, independent of my children, without fear that I am depriving them of precious therapeutic intervention.  And I am finally able to look away from my son M for a moment without that paralyzing fear that when I look back, he'll have quietly slipped away.

      Just as the first step toward my sobriety came with admitting I had a problem, so did my acceptance of M's autism.  Are there still days when I'm jealous, angry, scared, confused, and frustrated?  Absolutely.  But I accept those emotions.  I own them.  And that is the first step toward fully accepting my unique child.  For me, the journey with M has been enlightening.  It has taught me patience. It has taught me to trust my instincts.  It has taught me that I am the greatest advocate for my children. It has taught me that what works for one child with autism may not work for another and that even if something works one day you may have to reinvent the wheel the next. It has taught me that differences exist all around us and that acceptance and love will conquer any adversity.  But most of all, it has taught me that M is not a problem to be solved; he is a life to be celebrated.  



Jennifer Clark said...

That was truly beautiful, Jen.

My twins are "normal". One day, when the girls were being particularly difficult, I called my friend B, the developmental psychologist. "Am I doing something wrong, or is there something wrong with them?!", I moaned over the phone. "Neither," he said. "Sometimes being a parent is just shitty." This is now a mantra I recite to myself when the going gets tough. Sometimes, it's just hard.

I have met M & J. M is a friendly, self-possessed child, with fabulous table manners. I sat next to him and we chatted during lunch. He handled meeting new people better than some grown-ups I know. You have every right to be proud of him, and yourself.

Rock on, luv! You're doing great.

mam said...

I love this and feel this and live this, and will share it with my family, as I've never been able to articulate it as well (without crying). Lucy is in Kindergarten now, and I'm so excited to see who she is in 4th grade (and everywhere in between). Thanks.

Anonymous said...

I love you, and your amazing children. That is all. HUGS.

jclark43 said...

You totally put into words how I feel on a daily basis. My son is a wonderful gift from God, but would I choose for him to live this life, no. I am too divorced, but God brought me a wonderful man that works with developmentally disabled adults and he has become an incredible step-father to my son. I never thought I would find someone that would embrace my entire "package", but God has his own plan. Although I am not sure what made Him decide I was up to this challenge, I thank him every day for bringing this beautiful child into my life!

Tiffany said...

Just wait until puberty hits. Some days I feel victorious for simply not punching him. He's got Asperger's, not full-blown autism, but the ATTITUDE!!! I ask my husband constantly if this is 15-year-old-boy-hormones or ADHD/Aspie-issues or he's-a-little-dick-a-lot-of-the-time.

Men call him a pussy & girls call him cute - but not One Direction cute, more like puppies and midgets are cute. Those are the fronts where I have to defend him.

But I also tell him (and my other 3 kids) that people are jerks, and he'll have to tolerate rude people his whole life, so he's got to learn to suck it up and forgive. We role play this (because principals frown on him stabbing other students wth scissors/pencils/plastic forks... again) on a regular basis, giving all the kids a chance to brainstorm solving problems with a-holes.

Parenting is harder than any paying job I've ever had. And people with all "normal" kids get that it's hard, but they've never had a 10-year old who decides every bug will kill him and screams in terror at every housefly he sees. Or, at 11, he decides toilets are bad and won't use one for five months. (That when he learned to do his own laundry.)

Hugs to you from the deep South, Jen. I can't fathom doing it alone. M & J both sound rad, though. :)

Dr. B said...

Thank you.

I have a good friend with a son on the autism spectrum. She has spent hours of her time with me discussing his diagnosis, the therapeutic work she and her ex-husband do with him, the special classes he receives at school, and the myriad things her friends can and can't do to help. I always sit and listen, give her a hug and refill her coffee cup, because I can't say anything pertinent, since don't live with her son or carry the parental burden of the diagnosis. And the last thing I want to do is offer advice, since I'm completely unqualified.

I shared this post with my friend. She called me immediately after she read it and said, simply, "Yes. This. Exactly this." And then hung up, because we're both at work and shouldn't be reading blogs.

So thank you for giving me a glimmer of understanding of something I never thought I could understand. If M & J grow up to be half as wise and as strong as you try to be, they will be excellent men.

TheChickIsRight said...

O to the MG. I fucking heart you so hard right now. You rock.

Thank you.

JenW said...

Amazing post--thank you. My 14-year-old Aspie (I'm OK with that term, others may not be) is very high-functioning, but I knew just like you did. Something just doesn't click. He's awesome, and very bright and very funny. But it's still hard.

Your posts are great--and you seem like the perfect mom for your sons. They are so lucky to have you.

Kelly said...

Again you remind me why I am so blessed yo have you in my life. Not only as a friend and soul sister, but as a fellow realist and advocate. I love you.

Jen said...

JENNIFER - Yup, no matter what your circumstances, sometimes being a parent just blows. Thank you for your kind words about the shorties; I so enjoyed meeting you in P-Town; now I need to plan a pilgrimage to the Bay to see you at The Temple! :)

MAM- Kindergarten...I L-O-V-E that age! I looked at your page; Lucy is absolutely beautiful, and if you're living in Portland as well I'm sure she's getting exemplary services. Keep fighting the good fight, Momma! xoxo

MISTY - Love you more, Misty. Thanks for listening to me vent and whine for the last 48 hours. :)

JCLARK - Does that wonderful man have a brother? Or maybe some nice friends?

TIFFANY - Puberty...((shudder)). By the way, what's wrong with stabbing people with plastic forks? Seems reasonable to me.

DR. B - Love your friends short answer. That's how most of us communicate: "Hi. Yeah. OK, gotta go, M just flushed my car keys. Bye."

CHICK - Thank YOU. <3

JEN - I love the term Aspie; we use it all the time. We also cal typical kids "normies" which isn't always well received either. Meh...

Jen said...

KELLY - I'm reading your comment while I'm reading your's are colliding. I love you too; I know this year has been a real shitshow for you but stay strong -- wonderful things are waiting on your horizon! xoxo

Jen said...

By the way, if you're wondering why I actually had time to reply to comments today, I'm home with M who has the flu and has summarily vomited on every available surface in my home. Good times...

TheOtherLisa said...

Suddenly it's so damn dusty in here.

I'm glad that you took all this and put it into your special education vocation. You *get* it. I would have killed to have someone like you around when my son got "weird". The worst of it was he was teased and horribly bullied and all I got from teachers, etc. was to tell him not to react to it. Yeah thanks.

Of course now he's a senior in college, smart as hell, empathetic and loving, funny and sarcastic and awesome and yes, still weird.

I wouldn't trade him for anything.

Chillin'Villain said...

You say that you are not heroic or brave, but I beg to differ. To the millions of kids out there who are homeless, had abstentee parents, or just shitty really are a hero, because you care, love, and work hard.

You are brave because you stick around and ride out the good and the bad. No terstained face, exhuasted body, wiped mind, spent emotions, or kicked spirit stop you from getting up the next day and giving a damn about your kids.


MelindaLea said...

Jen, This was my first visit to your blog and this was the first entry I read. You are an amazing writer, truly gifted. You have explained life with Autism so well and so artistically.
When I married my husband one of his sons had been diagnosed with Asperger's. It has been a long road and he is now a freshman in college. Although he is not my natural born son, I have lived with the challenges of this "unique" characteristic and loved him and ached for him as my own. Recently a dear friend had conducted the Meyers Briggs personality evaluation on him. After he assessed him to be an "INFJ" it gave our son a new perspective on life. As his particular profile listed him as being in the 1% of the population. It gave him another explanation for his "behavior" and social "awkwardness" He has never liked the idea or label of being Aspergers or Autistic and he never embraced it either. So after posting his new found "personality profile" on his college website, he found another person with the same profile. A female, who lived in the same dorm. They are now in a "relationship" according to their facebook status. Which is the most exciting and profound joy that we as parents have ever experienced with him. They like to play video games, they like the same movies, books and music. It's the most normal he has ever felt and he is in deep like. We could not be happier. I know that every person's experience is different... but this was ours and when there are victories, we celebrate them with extra enthusiasm. Thank you for being such a profound voice. I am a fan.

Jeri said...

applause. well said. and for the record, I hate tags in my clothing and I can't stand the feel of rough fabric on my skin, to the point where I'll pay extra money to avoid it. I rejoiced when Hanes made tagless t-shirts and boxer shorts (I use for sleeping).

Mark Noce said...

No parent is perfect and no kid normal. If everyone reflected on that I think we'd all get a long a bit better:)

Erica B said...

This was a really great post, Jen. It sounds like you're doing the whole parenting thing right to me.

My kids are "normals", but I have always had problems with people thinking they are much older than they are, because of their size. This may not seem like a big deal on the surface, but it became a big issue in places like church where, the old bitties were all, "can't that kid sit still and act his age, isn't he in school?" "um, no. He's 2 and he IS acting his age." (my 9 year old is 4'9" and wears size 14. My six year old is following in big brother's foot steps). It's just crazy how as Americans we are a super judgey culture.

Congrats on the house!! Sounds like you have the keys now, when is the big move?

Valerie said...

You are my hero!! No bullshitting!! Absolutely amazing.



Jen said...

LISA - That goddamned dust gets in my eyes every time I talk about my kiddos. :). You are a Tiger Mama...I'm proud of you. xoxo

CV- OK, crying now. Thank you, just...thank you. But sticking around? Fighting for and loving my child? Of course!'re right. I too see the "throwaway" children whose parents can't help them or can't be bothered to try. Thats why I went into my line of work; to give these children a voice.

sars! said...

You are my hero. I don't mean that in a she-ra sort of way' though I'm sure you'd give that bitch a run for her money. I mean it in a very real, I respect you and think you are amazing way. Real heroes don't know everything and don't always get it right, real heroes don't give up when they get it wrong.

Thank you for teaching me to be a better human.

Anonymous said...

I have several close friends struggling with parenting autistic children. You expressed the roller coaster better than anything I've read. Thanks for giving me something I can pass along to them. You rock, and your kids rock.