The Autism Blog

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. 

In Our Own Words: A Panel of Adults with Autism Spectrum Disorder – This Month’s Autism 200 Class

apple1This month’s Autism 200 Series class “In Our Own Words: A Panel of Adults with Autism Spectrum Disorder” will be held Thursday, November 17, 2016, at Seattle Children’s Hospital in Wright Auditorium from 7 to 8:30 p.m. These classes are designed for parents, teachers and caregivers. The topics associated with the majority of classes are applicable to all age ranges and for a wide variety of children diagnosed with autism.

Join Dr. Gary Stobbe and a panel of adults with autism spectrum disorder to hear about their perspective about autism, employment, school, and their parents. What was helpful? What was not helpful? Audience participation will be encouraged!

Mindful Monday- Holiday Tips

 

Halloween is just a soggy sweet memory and you know what that means, don’t you? It means that we’ll soon be hearing holiday music in the aisles as we sip our gingerbread lattes.

It’s so easy this time of year to get swept up in the mad rush to THE HOLIDAYS.  Or if you’re like me, you get a little irritated and decide to try and ignore it all. What’s the big hurry?

Now is a good time to set some mindful intentions about what’s to come. Here are some tips for mindful holidays. Stay tuned for more the next couple months.

  • Set an intention (or two) for the upcoming holidays. It might sound something like this: “This year I’m going to focus on the meaning of the holiday instead of the marketing of it.”  Or “This year I’ll practice self-compassion when things don’t go as planned.” Or “Knowing there will likely be both stress and joy, I’ll expect some of each and be ok with it.” 
  • Make a list of things that have caused you stress in past years. It might be last-minute shopping or accepting too many party invitations or eating too many holiday goodies. Decide which ones you might be able to address ahead of time in order to lessen the stress.
  • Enlist the help and support of friends and loved ones by agreeing to slow down and simplify.  This might mean agreeing to a potluck meal instead of doing it all by yourself or the adults agreeing to give to a favorite charity instead of buying gifts for each other.
  • Remember that mindfulness means being aware in the present moment. It’s impossible to do this if we’re racing ahead in mind and body.

 

I love this definition of mindfulness from James Baraz:

“Mindfulness is simply being aware of what is happening right now without wishing it were different; enjoying the pleasant, without holding on when it changes (which it will); being with the unpleasant, without fearing it will always be this way (which it won’t).”

 

 

The Autism Blogcast with Jim and Raphe – November Edition

News Flash: The November edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.

In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.

These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!

In this edition of the Blogcast, our reporters provide a special election report, including the candidates and their stand on issues relevant to autism.

Ask Dr. Emily- Flu Shot Tips

Welcome to the October edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format. We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: I had to bring my 10 year-old autistic son twice to the doctor’s office for a flu shot. First time they couldn’t do it. Second time they gave him some medicine to calm him down which didn’t help. We ended up holding him down and doing it. It took 4 adults this time. I have no idea what we are going to do next time. My son is growing and I don’t think holding him down will work much longer. What can I do?

A: This is a great question and one that comes up every year around this time. There is a lot of work that can be done to prepare for events like these. These kinds of procedures can be scary for any child, but may be especially anxiety-provoking for children with limited language, cognitive, and/or emotion regulation skills. First, it is important that we are honest with kids about what to expect with shots; rather than telling kids that “shots don’t hurt,” we want to message that shots pinch at first, but that the pain is finite and only lasts a few seconds.

In preparation for the procedure, the use of social stories can help children understand what is going to happen and how. Additionally, frequent rehearsal at home using pictures and other visuals (like a toy doctor’s kit) can also help kids understand what to expect and can work to desensitize kids to the procedure and tools used.

You will also want to teach basic coping strategies within those social stories and rehearsals. For example, teaching deep breathing strategies (“smell the flower, blow out the candles”), positive scripts (like “I’m going to be okay. It only hurts for a second.”), or self-distraction strategies (like counting or singing out loud while getting the shot or procedure).