Archive for 2017

Differentiating with an Adult Child with Autism

 For most parents and most kids, adolescence is a time of great emotional development and differentiation. They don’t want to be around us, and at some point in the life of a teen in your house, you’re pretty ready for them to leave, too. 

 

It happened like clockwork with my typically developing daughter and me; first she pulled away, then we fought. Then I got so tired of her mess and attitude that I didn’t even cry (much) when she went to college in Vermont. Now that she’s 26 we’re very close, and yet we’ve managed to forge our very own, very separate lives.

Things have always been different for Caleb. My son is four years younger than his sister, and has a significant intellectual disability, epilepsy, autism, and is deaf. Differentiation with him has been all on me.  When my daughter was fourteen, she started the battle that is growing up.  She became embarrassed by my clothes and the things I said in front of her friends and let me know all about it. She defied me and talked back.  She was identifying herself as a person who was not like me – a step so important to becoming an adult.

Caleb has never cared what I wear, and at 22, has never once said no to a chance to hang out with me. I’m his favorite person all day every day.  If I would stay home from work and cook pancakes for him, he would never choose to leave my side. 

And this is great. It’s wonderful to be someone’s favorite person ever. For twenty-two years and counting.  All day every day.

Also, it has become pretty exhausting.

When Caleb was ten, I had to insist he finally potty-train. He would sit on the toilet for hours with me on the side of the tub feeding him tootsie rolls. It took about a month and not a few glycerin suppositories, but we did it.  He’s completely independent with toileting now!  It turns out, differentiation is going about the same way so far: slow, deliberate, and very late.

Caleb was 17 when we finally couldn’t care for him at home anymore and he moved into a group home. You’d think that would be a step in the right direction, but you’d be wrong.  Every weekend, I brought him home, catered to his whims, bathed him, and tucked him in at night.  Then every Sunday I would return him, showered and shiny, to his house.  It wasn’t until Caleb was 21 that I developed the emotional separation I needed to help him begin to differentiate.  It started with skipping a weekend.  Then, instead of bringing him home, I started visiting him at his house.  Sometimes, I would only stay long enough to take him to lunch or go to the park. 

There are many reasons this separation makes me incredibly nervous: the staff at the group home need a lot more training than they get, and I sometimes seem to be the only one providing it.  Caleb can’t use a phone and won’t pay attention to me on Skype, so there’s no contact with him if I don’t go visit.  I often arrive at his house to find that no one has made him shave in a week, and that his laundry is mixed with his roommate’s and the clothes he’s wearing do not fit. He has medical issues, and I’m not sure staff understands the right things to say to doctors when they take him to appointments.  I’m not sure he will be cared for adequately if I am not intimately involved.

It’s a fuzzy line we walk. I hover somewhere between over-involving myself to the point of abandoning all hope of either of us being an independent adult, and neglecting to advocate for this vulnerable person who I love. How do you avoid codependence with a person whose needs are nearly infantile?  How do you stay mentally healthy when you spend decades making sure someone else’s basic needs are met, regardless of whether yours are?  How do we grow up, Caleb and I, into an adult relationship?

Caleb recently moved into a new group home. Every Sunday I visit, help him shower and shave, and separate his laundry.  I take him to lunch, to a movie, and shopping for his favorite snacks.  I tell myself that this will change soon.  That someday, he will be independent of me, even if he’s not independent of help.  He has to be. I am mortal and very likely to die before he does.  That’s not the only reason to differentiate, but it looms large for parents of very disabled people.  It’s not healthy for them or us to be completely enmeshed forever.  While shaving my adult son’s face and brushing his teeth last weekend, I thought about how we’re doing with this growing up thing.  I guess it’s still a work in progress.

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.

Mindful Monday – Saying Thanks

When I had my first child, my mom signed me up for a subscription to Reader’s Digest, telling me that it’d be a long time before I’d have time to read anything longer than what I’d find there.

She was so right about that! Twenty-two years later, she still gifts me this subscription and I’m finding lots of good mindfulness material there to share with you.

In the October 2016 edition, Lisa Fields writes The Goodness of Gratitude.  In it, she tells us that we are living increasingly in a “me-focused world” of social media where saying thanks may be a dying practice. Say it ain’t so!

Take a moment to recall how it feels when someone does something kind for you. It may be as simple as holding open a door for you as you both arrive at the same time. Now take a moment to recall the feeling you get when you express gratitude for both the small and more significant kindnesses.

So whether it’s a quick but heartfelt thanks to the stranger on the bus or a surprise thank-you post-it note left on the mirror for your loved one, set an intention today to say thanks to at least one person. Then do it again tomorrow and the next day and the next.

The Autism Blogcast – June Edition

News Flash: The June 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 discuss a possible explanation for the 4:1 male to female ratio bias and subsequent research. Also discussed is the importance of increased representation of the autism community to help drive science and inform school and community forums of the latest findings.

 

Ask Dr. Emily – ASD and Adulthood

Welcome to the May 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 have a 16-year-old with autism who is “high functioning.” As a parent, how do you get a teen to realize they are going to be on their own? How do you help them see that the things that you try to teach them at home are going to be things they will need for the rest of their lives?

A: I think you’ve asked the ultimate parenting question when it comes to raising teens. This is something most parents of teens struggle with, so I know you’re not alone. Add autism into the mix, and it can be a real challenge to prepare a teen for the “real world.” Listen, all teens (and especially those with ASD) have challenges with executive functioning; that’s the thing that happens in your frontal lobe when you plan ahead, think of the future, think critically and logically. Science tells us that the frontal lobes of adolescents are going through a lot of changes, which causes them to function at a sub-optimal level. In fact the frontal lobe does not fully develop until the age of 25! We also know that autism can affect how quickly parts of the brain (the frontal lobe included) develop over time. Your child with ASD may need more time for parts of their brain to fully develop. Translation: Your child with autism may need more time to become fully independent.

What can parents do to support their child’s independence while the brain is developing? The answer–we (the parents) will have to act as their frontal lobes while theirs are “offline.” For example, we set expectations and limits around things like screens, social media, sleep, nutrition, freedom, driving, hygiene, chores. We assist kids with time management; we help them make and execute a plan, provide visuals to help them see their progress, and offer rewards for task completion. Ultimately, teens don’t like the limits and “meddling,” but it’s one of those necessary evils to help them develop good habits for the future. Over time, we slowly offer more and more freedom and take away some of the supports. By the time your child’s brain is fully developed, they will have the skills and habits you have helped them form and they will have a fully developed brain to help them use these skills effectively. At this point, we won’t expect them to understand WHY we put those boundaries in place or to appreciate the life skills we are teaching them. That comes later…much, much later.

Q: Our son graduated college in Aug 2016. He is living at home working part time, lacking a social group, anxious, and stressed, which I’m sure we are adding to. He does not know that he has autism. I believe we’ve been trying to fit a square peg into a round hole for years. How do I tell him he’s on the spectrum?

A: It sounds like you know it’s time to have this challenging, but important, conversation with your son. My guess is that he has wondered (or is currently wondering) why things that seem easy for others are harder for him. In my opinion, honesty, along with love and empathy and compassion and support, is the best policy here. You might let him know that you have something important you’d like to talk to him about and then check in with him about a time that is generally a good time for him to talk. I would also go into this conversation with as little expectation about the outcome as possible and with resolve to remain calm and compassionate no matter what his reaction is. We can’t begin predict how this will feel for him. He may be relieved to finally have an answer. He may not agree with the diagnosis and ultimately reject it. He may feel a number of things. The important thing to convey is that you love and accept him no matter what and want to help him however you can. Good luck to you and your family as you navigate this transition into “knowing.”