Support

All Articles in the Category ‘Support’

Ask Dr. Emily – Grief and Bereavement

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 Neuhaus, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format. Read full post »

Autism 200 Series: Crisis Support for Complex Behavioral and Mental Health Needs

This month’s Autism 200 series class is Autism 208: Crisis Supports : A Panel Discussion

Facilitator: Eric Boelter, PhD, BCBA-D

Panelists include: Elizabeth Landry, NW Justice Project, Gary Stobbe, UW Adult Autism Clinic, Beth Leonard, Developmental Disabilities Ombuds, Stacy Dym, Arc of King County, Gail Krieger, Medicaid/Healthcare Authority, Beth Krehbiel, Developmental Disabilities Administration, Arzu Forough, Washington Autism Advocacy and David O’Neal, Sound, Health Community Network Program

When faced with a crisis, where do individuals with severe autism and Intellectual impairment turn for support, treatment, services and stabilization? Those with complex mental health or significant behavioral challenges are not being served by current crisis services. Lack of appropriate services, held in hospitals, and inappropriate inpatient psychiatric placement are just a few of the alarming concerns. This panel session will take a closer look at what is available, challenges, gaps, barriers, and what should be done to prevent and intervene for people experiencing crisis, challenging behaviors and/or mental health emergency. This panel will address the needs of those enrolled in the Developmental Disability Administration (DDA) system. A future Autism 200 will address the needs of those not enrolled in DDA system.

Class Schedule: This class will be held Thursday, September 19, 2019 at Seattle Children’s Hospital in Wright Auditorium from 7:00 to 8:30 p.m. Please join us in person or watch on Facebook live. For more information see the  Autism 200 Series webpage.

Here is a link to the class flier: Autism 208 Crisis Supports FLIER Sept 19, 2019 

Link to class powerpoint:Autism 208 Crisis Panel.2019

Ben’s Fund Now Offering Grants for Young Adults With Autism!

We hear it too often- what happens when our kids become adults?

Who will make sure their needs are met? How will families navigate this transition?  Where will funding come from?  Where do we go from here?

Recognizing the growing need for resources, support and direction for families with young adults on the autism spectrum, John and Traci Schneider have yet again paved the way to provide a glimmer of hope for families navigating this transition into adulthood.

Read full post »

Autism 205: Inclusion: What’s Working and What’s Next? – A Panel Discussion

People with social, intellectual and behavioral differences are making positive changes in their own lives and in the lives of others. From education to policy to employment, the future is brighter because those with autism and other abilities are speaking out, stepping up and changing the way our society operates.  Read full post »

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.