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A Tribute to Charlie Burnett

It’s hard for me to recall where I first met my friend Charlie Burnett. It may have been in an office visit with his then young daughter Alyssa, or it may have been at a charity fundraiser. Through the years, and whatever the setting, Charlie was always kind, soft spoken and thoughtful, and never wavered from his principal mission – to do what was necessary to see his daughter Alyssa happy.

 

Alyssa is now a beautiful 30 year old woman with an infectious smile that lights up a room when she enters. Alyssa has lived with a developmental disability – in her case, a form of autism that prevents her from using words, and is associated with other medical issues including intractable epilepsy. Charlie and his wife, Barbara, have been first-hand witnesses to the challenges facing people with developmental differences – in everyday life, in school, and even in institutions such as Seattle Children’s Hospital.

A story I will always remember is recalled by Charlie and Barbara, an occasion a number of years ago (well before we launched Seattle Children’s Autism Center) when Alyssa was admitted to Seattle Children’s through the emergency department for a change in her behavior. It was clear to everyone that something was physically wrong with Alyssa, but because of her communication deficits, she expressed herself through violent behaviors. The hospital personnel were ill-equipped to deal with the situation. With Charlie and Barbara’s persistence, Alyssa ultimately received the necessary medical care, but in the process it became clear that much needed to change and improve in our system of how we were providing care and support for individuals and families impacted by autism.

Charlie was not the type of person to sit around and accept these societal failures. Recognizing his position of influence as a Senior Vice President at Costco (Charlie founded the pharmacy division for Costco), he and Barbara took aim at one of the biggest gaps of support for people with developmental disabilities. In 2004, along with a close-knit group of friends and advocates, Charlie and Barbara started the nonprofit Northwest Academy for Exceptional Children, later renamed Tessera. Tessera’s mission was to provide lifelong learning experiences for individuals with autism and other developmental disabilities so that they might realize their fullest potential.

In 2008, Charlie and Barbara took charge with influential voices in the ears of Seattle Children’s leadership – supportive voices that helped us take the leap of faith necessary to see the Seattle Children’s Autism Center become a reality. This was no easy feat at the time – I can honestly say, that without the commitment of the Burnett family, the likelihood of us launching the Autism Center would have been seriously compromised.

In 2014, Charlie and Barbara again changed the face of services in our region for people with autism. The Burnetts and Tessera donated $7 million, including Tessera’s space in Bothell, to launch Seattle Children’s Alyssa Burnett Adult Life Center. In collaboration with other community providers, it offers year-round classes for adults with autism spectrum disorders and other developmental disabilities, helping to fill the enormous gap in services that occurs when other programs’ enrollment ends at age 21. Charlie and Barbara’s combined philanthropic commitment, along with Tessera, now totals about $8.5 million and is nothing short of incredible. While it was not easy to plan for and launch the center, once again, the vision of Charlie and Barbara to see a better future for Alyssa and others living with developmental disabilities proved correct. We are grateful for the Burnetts’ passion and generosity – and honored to help carry out our shared vision to provide critical resources for adults with autism.

I know if Charlie were reading this, he would deflect these successes to those around him – to Barbara, to his close friends, including Ron Yutrzenka and Mike Smith, to Costco, and to the staff at Seattle Children’s. He would reflect on the driving purpose of his work and these accomplishments – to create a better world for his beautiful daughter Alyssa. Thank you Charlie – you succeeded. I will miss you, I will always remember the sacrifices you made, and I will use your love as inspiration for the work we continue to do – for Alyssa, and for all of the children and adults that need us as their voice.

When Behavior is the Disability

 It’s OK to be mad, but it’s not OK to hit.  This is often the first instruction we tell toddlers as they seek to understand the world of confusing instructions, disappointment, and being told no. My son Arthur hits, kicks, scratches, and pinches people when he’s upset. These are startling words to read and difficult for me to write. Arthur is not a toddler. Arthur is a 17-years-young man. He was diagnosed with autism at the age of two.

We’ve had many highs and lows over the years. The highs are amazing – his first 3-word sentence at age 6, fully toilet trained at age 9, noticing him read for pleasure at age 13, and his sheer joy when exploring Google Maps.  He loves his family, our friends, his teachers, and his therapists.  Arthur brings out the best in everyone. He redefines what it means to be normal. He strives to make sense of his life, just like the rest of us. He is a great guy.

Let’s talk about the lows. Aggression, property destruction, and blow-out tantrums are about as low as it gets for us.  Everyday experiences can be powerfully overwhelming, frustrating, and confusing for Arthur.  Loud sounds, nonsensical rules, and confounding instructions make him feel overloaded. And when that happens he can sometimes lash out with a quick pinch, hit, or kick.  I know the triggers and know the signs leading up to it, but I’m his mother, and I know him so well. I can anticipate his actions…most of the time. Unfortunately, not everyone interacting with my son can spot the build-up to his aggression.  When Arthur becomes aggressive or destructive, time slows down and my vision tunnels. I scan for items that can be thrown, windows that can be broken, or the direction of the busy street he might bolt toward. I become stronger – ready to deflect, duck, and protect. Sometimes Arthur is so upset that he harms himself so I physically have to protect both of us.

Everyone feels bad when Arthur strikes but no one as bad as him. After an incident, Arthur has a look of fear and regret as if he honestly cannot control it. He will cry and say repeatedly, “I don’t want to be angry.” “I don’t want to hit.”

If a stranger hit me I’d be scared and furious. But in those moments when Arthur has completely lost his ability to control himself, I feel compassion and deep sadness. It’s difficult beyond words to watch your child become so upset that he harms others, destroys property, and injures himself.

The aftermath leaves Arthur and me completely drained. Arthur likes to decompress in his room. That’s when the fear sets in for me. Will this continue into adulthood? What if he hurts someone? What happens if the police are called? Will they know he’s disabled rather than a threat?  Will he be hurt?  Will this limit his opportunities, freedom, and dignity in life?

Impulsivity, emotional control, and inflexibility are hallmark characteristics of autism. They are the main reasons for my son’s challenging behaviors. Fortunately, years of therapy to address challenging behaviors have paid off. We have a much better understanding that behaviors happen for a reason. They are learned, and they can be addressed. We better understand the triggers that set him off, effective strategies to keep him calm, and what works when he experiences a serious meltdown. Behavior is communication.  As we’ve come to understand what he is trying to tell us, we are now able to get out of the house more. Like many parents with children who experience aggression, the fear of a meltdown can drive us into isolation, making us reluctant to leave the house, send our child to school, participate in community events, or even go to the grocery store. 

Aggression, self-harm, property destruction, and other challenging behaviors are some of the most difficult aspects of autism. Fortunately there are Applied Behavior Analysis (ABA) strategies that are effective at addressing challenging behaviors. In the next blog, Karen Bearss PhD, a clinical psychologist at Seattle Children’s Autism Center will focus on parent training to address problem behaviors for individuals with Autism Spectrum Disorder. She explores many of the same strategies that helped us understand and address Arthur’s problem behaviors and best of all, Arthur is happier and possesses a sense of sovereignty.

Finding comfort and camaraderie with other parents has helped and this wallet card has also come in handy for me over the years.

 

 

 

 

 

 

   

 

The Autism Blog turns 6!

Another year has come and gone and we have much to celebrate. First, our thanks to you, our 1000+ subscribers who let us know you find the information in our posts meaningful to your lives. 

Next, thanks to our providers and to our guest authors who take time from their busy schedules to write or film content for a blog. A special thanks to Kylie for filming Raphe and Jim for our blogcast and to Emily for her Ask Dr. Emily blog column. We’re a small but dedicated team and we look forward to another productive and successful year ahead.

 For the second year in a row Healthline has named our blog as a top Autism Blog!!

 

 

 

 

 

 

 

Savvy Mom Moves Science Forward: ADNP and Autism

Parents of kids with autism typically are told that we do not know the cause of it. For some, we eventually do and often it is at the insistence of parents that we figure it out.

Sandra Sermone knew there was “something” with her son and persisted in finding clues and then answers to what “it” is – a rare genetic condition that underlies his autism diagnosis. Taking matters into her own hands, she found a researcher in Israel to help and formed a group of fellow parents whose children have this condition. From there, she began to look for common denominators amongst their children. To read more of Sandra’s incredible efforts, check out these links to her scientific paper and a news story on her family:

NCBI :Premature primary tooth eruption in cognitive/motor-delayed ADNP-mutated children

NCBI:The Compassionate Side of Neuroscience: Tony Sermone’s Undiagnosed Genetic Journey–ADNP Mutation.

Local mom helping change the way doctors look at rare genetic syndrome linked to autism

Here’s to you, Sandra, scientist-mom extraordinaire!

 

Seattle Children’s Celebrates Autism Awareness Month

April 2nd is World Autism Awareness Day

Seattle Children’s Autism Center, Alyssa Burnett Adult Life Center, and Seattle Children’s Autism Center Research team are lighting it up blue to celebrate!