Author: Katrina Davis, BA Family Services Advisor

Autism and Coping Tools for Parents- Part 7 Sweet Surrender

Welcome to Part 7, our final blog in a series of parent coping skills. Surrender. What a loaded word.  It implies giving up, laying down your arms, losing the battle.  Surrender  was the last thing on my mind when my son Arthur was first diagnosed with autism at age 2. 

 

Every turn from the moment he received the diagnosis was an epic battle. Fighting for ABA coverage, jockeying for a “good” school placement, baffling over why state and federal disability services were frozen, and poring over information about this complex disorder. What did it mean for Arthur and our family?  Not to mention grappling with my own grief and white-hot fear about my young child’s future.  Doctors reminded me, prognosis was impossible.  At 18, will he be able to tie his shoes or drive a car?

Surrender? Are you kidding me? I was shaking my fists, stomping my feet, rattling cages, pressing 0, and taking names.  I was a fierce warrior for Arthur.

The complex details, denials, misdirection, confusion, and inability to know if what we were doing was making any difference left me overwhelmed, defeated, and depressed. All this energy, pain, and struggle to meet his needs and our little guy seemed to go more inward with each passing day. 

Before I had Arthur, my friend Diane and I would call each other daily to talk about our daughters, both infants at the time. I’d still be in my bathrobe at 2:00 p.m. reeling from a morning of fussy baby, poopy diapers, sleep deprivation, and wondering how yogurt got on the ceiling. We’d share honest moments about how incredibly hard this new mom thing was and how our 40 hour a week jobs were so much easier.  Our conversations predictably evolved to how beautiful and amazing  this new little person was and how we both just need to surrender to the Cheerios gathering next to the dust bunnies in the corner.  We’d end our regular phone conversations with a simple “surrender” reminding us both to turn towards and embrace our new lives.

So a few years later when I was told our new baby boy had autism, I wondered how I would apply my once-effective surrendering strategy when fighting seemed like the only option to get anything done for him. It was impossible to feel calm or surrender to anything.  I was in a constant state of urgency.   

Intellectually, I knew it made sense to find peace in the face of so many unknowns. Why break myself against what I clearly could not control or change.  I knew I’d be happier if I just let go of my tight grip on impossible circumstances.

My anger would not make my insurance plan cover ABA. My despair would not help Arthur begin using language and my fear for his future was getting in the way of me enjoying him in the moment. 

Unfortunately, I could not close my eyes and will surrender to just happen. So I began my quest to accept what I could not change. I read books with titles like, Go to the Places that Scare You and Comfortable with Uncertainty. I soaked up what I could learn from other parents and adults I met with autism. I was beginning to see that the peace that comes with surrendering surfaces with time and deliberate attention-as the end-result of a long and reflective process – along with some hard work. I also learned I might not achieve permanent surrender but I could strive for moments of it.

Surrender does not mean less work or halting efforts to help my child reach his potential. I will continue to seek effective therapies, interventions, appropriate education, community participation, and I will continue planning for his future.   I just might be a little more “chill” about it.    

I pause, appreciate, and celebrate my son’s unique personality and the many gifts he offers the world.  There is always a rich reward when I pause. For example, tonight, as I write this, Arthur is in his room singing along with Karen Carpenter. What 17-year-old boy in America listens to The Carpenters? Mine does and he’s belting out Close to You at this very moment. It’s delightful. He’s delightful. Moments like this give me the rocket fuel I need to propel my way through the inevitable work it takes to meet his complex needs. 

Surrender also meant I stopped riding his challenges and bad days so closely. I can feel sad for him and pain when he suffers but ultimately, it’s his life. It took me years to develop what I have come to call a loving healthy disconnect.  It’s much easier with typically developing children but I would argue just as important for our children with developmental disabilities. I need to be a steady bow. I will need to let him go. That arrow needs to fly!  Easier said than done. I’m still working on that one.

dogLastly, there’s an object in my kitchen windowsill. I see it every time I do the dishes, reminding me what surrender means to me. That object is a little Fisher Price dog that I found in my son’s shoe when he came home from school when he was 5 years old. That beat-up wooden figure had been in his shoe all day. Arthur did not have words at that age. No one knew. No one could help. It must have been so uncomfortable. His toes were bruised. He suffered and I could not help him.  I cried because it represented so much about the entire journey with autism up to that point.  Later that night as he took his bath, I looked at my beautiful and unique little boy enjoying his bubbles. He was ok. More than ok! He seemed perfect at that moment and I felt pure joy.  So, the dog went in the windowsill to remind me to look beyond the struggle – even his struggles – to let go of what I can’t control.

I will not always know how to help him. He might not continue to improve, he will face hardship, others will care for him, and I’m pretty sure he will not be a Major League Baseball player or a Supreme Court Justice. I’ll do my best and that won’t be good enough sometimes. And that’s ok. I surrender. Wholeheartedly. 

What to Tell Your Summer Program Staff

As we turn toward the long summer months, many parents of children with autism are busy filling out summer program forms. If you are like me, you pause when you get to this section:

Does your child have any behavioral concerns?
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Why do I pause at this question…?

First of all, I usually marvel at how little space is provided to answer such a complex question. My son’s Behavior Intervention Plan is nine pages long!

Second, the answer for my son is YES, he does have behavioral concerns. I’ll admit to being afraid to list his specific challenging behaviors for fear of being excluded from the camp. I’m tempted to simply write “some” with a little smiley face and leave it at that—-but this would be unfair to everyone— Read full post »

Separating Autism from the Person with Autism?

Kat and Arthur 2015I crave information about autism. I am parent of a child with autism and I work closely with individuals and families living with this complex disorder. 

I read a lot. I listen to parents. I seek to understand those who are diagnosed. My cup is not full. I am still learning. 

There are so many different opinions, viewpoints, experiences, and perspectives that I must often remind myself that perception is reality. No two people with autism look alike. Nor do their experiences. So if I want to continue to learn and evolve, I need to keep an open mind so I can absorb the many facets of how autism affects us all. 

When I read this blog by Carrie Cariello, titled I Know What Causes Autism, I smiled. This is a Read full post »

Saturdays with Arthur

Arthur, my 15-year-old son, has autism and getting out the house for community outings can be a complex, demanding, stressful and unpredictable journey for both of us.  

Last year, on a gray December Saturday, Arthur and I were flopping around the house in our pajamas. The day wore on and we were feeling restless and confined. Arthur started to pace and gallop. 

A clumsy giraffe in my small kitchen. His way of saying, “not one more minute under this roof.”    

I remember this day because months before this, we had some very rough moments in public. The kind of day when we both return home traumatized. Tantrums in parking lots, meltdowns in bowling alley, aggression in Safeway, bolting in the museum, the sound of breaking glass in the gift shop, nibbling others’ French fries in the food court and sniffing strangers in the elevator. Keeping him safe, apologizing to others when necessary, and helping Arthur to understand the rules of social navigation was overwhelming. I started to wonder if we’d never leave the house—even if it meant terminal cabin fever.   Read full post »

What This Parent of a Child with Autism Wants You To Know

Kat and ArthurParents of kids with autism love to talk about their kids. Just ask us! Each of us has our own story to tell and this is mine. Ask another parent and you’re sure to get a different perspective.

When I tell people my child has autism, I often wonder what they envision. Do they conjure up an image of a child “locked up in his own mind” looking blankly out at the world?

Or perhaps they imagine a “little professor” who has can list in a very business-like tone and in alphabetical order, the 400,000 species of beetles known to man. 

You should know that my child is not like Rain Man or Einstein.

Some children with autism may have savant abilities or have remarkable splinter skills but most do not have a special superpower. On the same note, not all children with autism have an intellectual disability. And having intellectual disability does not mean a child is not smart.  Read full post »