Sunday, June 29, 2014

Autism's Second Mourning

A new friend shared this term with me.  She is a BCBA and has worked with kids on the autism spectrum.  I've pondered our own 'Second Mourning' a lot since she mentioned it offhand while helping me diffuse Noe's very public meltdown.  I've decided that if I ever write a book, this will be the title.  It will be the anti-miracle autism book.

The First Mourning occurs after the initial autism diagnosis.  You immediately realize that your child's path is going to be different.   But there is hope!  Autism therapies, special diets, brain studies.  You read the miracle books.  You convince yourself that once you can get your child the proper help, he will come out of this relatively unscathed.

So you devote all of your time, money, and patience to this pursuit.  Uproot your family's entire life by finding new jobs and moving to a place with better services and schools and the hope of an insurance mandate. You lure the best therapists to your home ABA program, make sure his IEP goals are carried over at home.  You analyze daily data from therapy sessions, laminate PECs and visual schedules at ungodly hours.  Even a quick outing to the neighborhood grocery store becomes a targeted learning experience.

While I don't want to belittle the progress Noe has made and the amazing work of his therapists and teachers, I think all can agree that we haven't had the outcome we hoped for nine years after his diagnosis.

And as a result, a dark gloom lingers over our family life.  The knowledge that we failed to save Noe from his autism, lurking in every shadow.  That maybe if we'd worked harder, spent more money, tried a more unconventional approach to his therapies, we would be looking forward to college prep rather than life skills, varsity sports rather than Special Olympics.

This Second Mourning is keeping expectations high for Noe, maintaining his therapies and constantly looking for ways to increase his skills and quality of life, while trying to preserve our finances, our sanity, our family.  Remembering that we have another typically developing son who has spent his summers as a "peer model" at autism socialization camps, and way too many afternoons sitting in appointment rooms.  My baby boy, who learned to both walk and read in the waiting room of Noe's speech therapist.  Second Mourning means making sure Asher has room to spread his own wings and is not defined by his brother's autism.

Second Mourning is also worrying incessantly about the future.  Where will Noe live?  What will he do when he ages out of the school system?  Will anyone hire him?  Who will care for him when we pass away?

This Second Mourning has been long, drawn out, and unpredictably painful.  One day I think I've made it to Acceptance, that I've cried my last autism tears, and then something happens… Noe throws a tantrum on the city bus and we have to get off, or he tosses his iPad into his bath, or a stranger comes up and asks if he's a "retard"... that catapults me back into the painful realization of our situation.

I remember the day I transferred the money we had saved in Noe's college fund to Asher.  Despite all of our other Noe-related expenses, we stashed away a very small amount each month for this fund.  It was our Hope Fund. My voice cracked over the phone as I explained the transfer of funds to the college fund account manager guy.  He was sympathetic and helpful, probably assuming that Noe had died.  Noe was not dead but we were holding a funeral for our own dreams and anticipating a more realistic future for him.   That was a Second Mourning.

Life is complex, nuanced, beautiful and terrible all at a once, and that lurking black shadow is just one layer of our lives.  Along with the constant worry is constant joy.

Last night I found Noe snuggled between my bed sheets, hiding from his bedtime.  When I had told him earlier to get into his pajamas, he had stripped to his underwear and promptly forgot the second half of the request.  Instead of scolding him, I giggled with him under the covers, wrapping my arms around his soft brown skin, tracing his sharp angles and bony contours with my fingers and whispering sillies into his ear.  He grabbed for my hand just before he fell asleep.

Before I had children, I recall wondering what it would be like to raise a disabled child.  I knew that I would love any child of mine, disabled or not, but my focus was so narrow, and my life experience so limited, that I couldn't completely comprehend how that would come to be.  But it is not hard to love Noe.  I love Noe because he is.  Because he is mine.  Because he loves me and needs me.

I see such emotional maturity and compassion in Asher, surely an unintended consequence of his life beside Noe.  A life lesson that Ed and I could have never instilled on our own. Noe's teacher told me that Asher comes up to Noe's lunch table every day to say hello to his brother and to give him a hug.  I am so proud of him.

Ed and I have not won, but are fighting the autism war together.  We are old autism war buddies with stories and battle wounds, true partners, confidantes, and through it all….still madly in love with one another.  If I am Noe's advocate in the community and his teacher, Ed is his peaceful beacon.  When Ed is home there is a calm in Noe and in our home.  One that I have never been able to replicate on my own.

The thing to remember amidst the fear of the Second Mourning:  Everything has always worked out.  When Noe was first diagnosed and I read about kids on the spectrum, I feared Noe's autism would keep our lives permanently trapped within the walls of our home. Now we are barely home.  I couldn't envision preschool, elementary school, moving cross-country before they happened.  And Noe has always adapted, and even thrived in new situations in his very own way.

There will always be mourning and there will always be joy….and we will continue to move forward.

2 comments:

Michelle Collins said...

Hi Jen- I resonate with so many thoughts from your
blog. I saw it on Facebook (posted by a teacher friend
of your sister Katie). Our oldest child, Drake, just graduated from high school in Portland, Oregon. He was diagnosed with autism at 3 1/2 years old. We now find ourselves in a new season of life where we are starting over and making sure he has the structure of 'post-high school' transition classes, applying for social security benefits, helping him realize his independence. I plan to read more of your previous blogs over the summer. So true, that the joys contain a constant shadow of sorrow.
Keep loving your sons. So thankful you have your husband's support (I'm also really fortunate my husband has always been actively involved with our kids as well). Michelle C.:)

Jen Guzman said...

Hi Michelle,

Thanks so much for reading my post and for your thoughtful comment! I would love to hear more about your post-high school journey. Especially because there is an excellent chance we will be living in Portland when Noe is out of high school. My email is ptowngirl22atgmaildotcom. It is always great to connect with other autism families.