Author: Lynn Vigo, MSW, LICSW

Autism and Coping Tools for Parents Part 5: Humility

Most new parents will admit that no matter how prepared they felt going into childbirth, once baby arrived they realized just how much they didn’t know. Thankfully, there are abundant parenting resources to be found to help with everything from colic to diaper rash.

 

Parents of kids with autism however, get the award for “most humbling” parenting, as our learning curve is Grand-Canyon steep. We’ve yet to see a How To guide for handling the  daily dilemmas that autism brings.

Before autism, I was quite organized and thought that if I planned and worked hard enough at something, it would all work out. Was I ever surprised to learn how unorganized my life had become and that no matter how much I put my mind to the challenges, things often didn’t work out as hoped or planned. There were days I’d be reduced to a puddle of tears in the middle of my kitchen floor. As a social worker, I was skilled at locating and navigating resources for others but when it came to my own child, I found myself humbly amongst scores of “regular old parents” trying to make sense of confusing, hard-to-access services.

As a busy parent, you may not have time to see the benefits of humility but I assure you – they are there. Here are some that I’m aware of.

Realizing you don’t know it all  . . .

  • Allows you to ask for help, a good thing to learn, particularly early on in the diagnosis
  • Allows for curiosity, always helpful when trying to figure out our kids
  • Allows you to build a team for you child and your family- this is a team effort
  • Allows you to continue to ask, research, read, and explore possibilities
  • Allows you to share the difficulties and the successes with others
  • Allows you to become a skilled listener and to take the other’s perspective
  • Allows you to pick yourself up and try again – and again and again

What research tells us about humility and great leaders

Jim Collins is a business leader and researcher who wanted to know what is was that accounted for the differences between good companies and great ones. His team came up with a list of criteria for identifying the good (the comparison companies) from the great (Level 5). When they looked at all the variables that accounted for Level 5 companies, it wasn’t what you might expect of the leaders – that they were extroverted, aggressive go-getters. Quite the contrary, they were:

  • Calm
  • Determined
  • Unwavering resolve
  • Humble
  • Self-understanding and awareness
  • Openness
  • Perspective-taking

Sound familiar? Like it or not, as parent, you are the leader of your child’s team. Teachers, therapists, doctors, and other family members all look to you for direction.

In summary, don’t worry if you don’t have it all figured out. No one does! We do the best we can under difficult circumstances because we love our kids and would move heaven and earth to help them.

Here are some reminders for those times when you’re feeling less than confident in parenting:

  • We don’t know what we don’t know (so much is new and unpredictable)
  • Surrender to that truth
  • Stay open to learning
  • Calm always trumps chaos
  • Be aware of own strengths and limits
  • Put ourselves in the shoes of others
  • Ask for help and help others

“Before I got married I had six theories about bringing up children; now I have six children and no theories.”

  • John Wilmot (2nd Earl of Rochester, 1647-1680)

Is parenting your child with autism a humbling experience? Share your story with us. We’d love to hear from you!

 

 

 

 

Mindful Monday- Snippets from Shamash Alidina

I recently participated in a thirty-one day Mindfulness Summit, and a handful of presenters were my favorites, including Shamash. I liked his easy-going style and humor and I also just like saying his name. He, like most of the summit speakers, has taught mindfulness for many years and has a book on the subject. While I’ve never cared for the title of this book series, I did enjoy his Mindfulness for  Dummies and will share some of his mindfulness tips.

 Healthy & Helpful Attitude

Shamash tells us that attitude is an important part of mindfulness and that attitude is a choice. Being aware on the attitudes we bring to life – whether it’s marriage or parenting or our work or practicing mindfulness – can affect the outcome in so many situations. We all know people who seem to have a sour outlook on life. Life is not fair. No one has it as hard as I do. Nothing will ever change. Nobody understands. Why do bad things always happen to me? No one likes me. They seem eternally stuck in unhelpful attitudes.

 Shamash identifies these helpful attitudes that are the foundation for a healthy life:

  1. Acceptance – not giving up but allowing thoughts, feelings, sensations to exist without resistance
  2. Patience – listen more than you talk, choose the closest rather than the shortest line
  3. Seeing afresh – try looking at common things with new eyes – what have you missed?
  4. Trust – believing that both joys and challenges are temporary/ to be expected helps build trust that things are okay
  5. Curiosity – ask lots of questions about thoughts/feelings/sensations “I wonder what this is about?”
  6. Letting go – First realize what you’re holding onto. Doing so helps to let it go.
  7. Developing kindness – non-judgment of self and others
  8. Appreciating Heartfulness – pay attention to whatever brings you warmth and happiness
  9. Gratitude – even if not perfect, acknowledge the good there is to your life
  10. Forgiveness – for self and others – acknowledge being human and that we all are imperfect

 

 Now imagine the opposite attitude of some or all of the above. Identify which of these attitudes you might need a little work on. See if it makes a difference.

Autism and Coping Tools for Parents Part 4: Reframing

Katrina and I first met Susan and her family in a parent support group here at Seattle Children’s Autism Center. Since then, we’ve observed her skillfully demonstrate a number of coping tools when challenges arose. Today we share how reframing has helped with adversity in her life.

 

 

Q: How do you define this parenting tool?

A: For me, Reframing is a parenting technique that means intentionally choosing my frame of reference.  It is important for me to view my parenting experience in relation to the person my son is rather than the person I thought he might be.  Before my son was born, I had ideas about what I would teach my child and what we would do together.  Those ideas assumed that my child would be typically-developing.  That turned out to be the wrong frame of reference.  I needed to think about hopes, goals, expectations, and celebrations that used my son, as an individual, as the reference. I would call this a child-centered framework.

Q: How did you discover this tool for parenting kids with ASD?

A: My brother and his wife have been my role models for using a child-centered framework for parenting. They have two typically-developing children, and they always honored their children’s unique personalities and looked at parenting as an opportunity to get to know their children and nurture and guide them.  They did not try to mold their children into some preconceived notion of success.

Q: How has this tool lessened your stress or made life a bit easier for you?

A: By reframing my parenting with a child-centered framework, I can celebrate my son’s strengths, which include a great sense of humor and a relentlessly positive outlook. I can also help him with his challenges, including repetitive scripting and slow academic progress.  Looking at our journey through the lens of my son’s unique personality and combination of strengths and challenges, I can see that he has steadily grown and developed.  Rather than seeing my parenting as continually failing to achieve the milestones of typically-developing children, I can see my parenting as supporting my son’s individual progress.

This does not change the fact that I sometimes long for the milestones celebrated by parents of typically-developing children. The community standards for the academic, social, and behavioral progress of typically-developing children do not apply to my child.  I go through cycles of that being sad and disorienting.

Q: Did you find that the more you used this tool, the better you got at it?

A: I suppose reframing has brought me to an important realization.  It has led me to think long and hard about what it means to have a “good” or “successful” life.  The things that have made me feel that my life is good or successful have been friends and family, good health, meaningful work, supporting my community, and enjoyable hobbies.  By that measure, my son’s life is good and successful.  Supporting and empowering him to continue to have a good and successful life is the focus of my parenting.

Q: What else would you like us to know about this parenting tool?

A: Reframing does not mean denial.  As I said, the fact that the typically-developing framework does not apply is still sad and disorienting sometimes. Reframing, for me, simply means viewing my parenting through the lens of the person my son is and with a focus on doing my best to make sure he has a good and successful life.

We’d like to thank Susan for sharing her coping tool with us and invite you to do the same. When we help others, we help ourselves.

Education Opportunity – Certificate Program through the University of Washington

Certificate3About a decade ago Dr. Felice Orlich and Dr. Raphael Bernier were discussing the challenges facing the autism field because there just weren’t enough experts out in the community to support families affected by autism. So, Dr. Bernier, while a doctoral student at the University of Washington, applied for and was awarded a Huckabay Fellowship to support his efforts to develop a graduate level educational program focused on autism. After a few years (there were lots of other things going on at the time…finishing graduate school, doing residency at UCLA, setting up a research lab, etc, etc), Dr. Bernier was able to implement this program through Professional and Continuing Education at the University of Washington.

The Certificate Program, Autism Studies: Theory and Practice, as it is now named, is now in its third year. The first two years were very successful and the team of instructors is enthusiastic about this third year.

The program is a 3 course, graduate level certificate program that provides comprehensive education about autism spectrum disorder from both the scientific and practical perspectives. Over the course of the year students explore how cutting-edge research informs our understanding of autism and the most effective approaches for autism treatment and education. The program is designed for those who live with, work with or support people impacted by autism spectrum disorder.

Each of the three courses is provided either in classroom format or an online format for individuals unable to attend in person on the Seattle UW campus. For students attending class in person, you can engage face to face with your classmates and instructors as part of a highly interactive curriculum. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub. For students attending online, Courses are streamed online in real time from the classroom. You interact with your instructors and fellow students via chat, using Adobe Connect web conferencing software. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub.

For more information about the program .

Or, watch this short video.

What started as a thoughtful conversation between a student and mentor nearly a decade ago has transformed in the past few years into a cutting-edge educational program that helps bridge our understanding between science and practice—and all focused on autism.

 

Autism and First Responders

 

 

 

PoliceLast week I received this comment on our blog about Dads and Autism:

“Ben’s Dad here. I really connected with the above article and others’ reaction when they got the diagnosis. I think my concern for my son was (and still is to some extent) about his safety. My son is really high functioning, but when he was first diagnosed I heard of all kinds of horror stories of kid with autism eloping. I had a friend whose son had autism and they had to put an alarm on the door because he would leave the house at night. They said they found their son one night on the entrance to a freeway. As my son began to grow and develop I became less concerned because he seemed to cope well with change and could adapt. Now that he is 11 my main concern is his interaction with others especially the police. My son is African-American and my concern is that if he is approached by the police and they request something of him (i.e. put your hands up, freeze, etc.) and he is unable to understand he may be perceived as resisting. I continue to guide him and instruct as best as he can comprehend, but I am still concerned for his safety and well-being emotionally and physically. Thanks for allowing me to share.”

The next day my colleague Katrina shared with me a nerve-racking video of a teen with autism and his behavior therapist in a tense situation with police in Florida. The young man had run away from his group home and his therapist went after him. Cell-phone video shows the therapist identify himself and the client, follow police instructions to lie down and put his hands in the air, explain that the teen had a toy truck in his hand. The teen doesn’t respond to the therapist telling him to lie down too as instructed by the police. The therapist is shot three times by police and the teen is handcuffed and taken away. The worst nightmare for many a parent of a teen with autism.

What can we learn from this incident? Is there a way to avoid or prepare for something like this?

While there’s no way to prepare for every possible incident, there are steps parents can take to increase awareness. When our daughter was young, she would oh-so-stealthily sneak out of our home to neighbors’ homes. She knew exactly where Miss Linda’s cookie jar was. We made a point of getting to know our neighbors and asked for their help if they ever saw her outside of our home without an adult. For older kids, particularly young adult males, it may be a good idea to get to know the local first responders in your area. I know several parents who are on a first name basis with theirs. If your child lives in a group home or supported living, you might want to make sure staff have a recent photo and information sheet about your child at the house, in the car, and in their backpack. For more on safety ideas, check out the following:

Smart911 allows you to develop a detailed profile of your family members that pops up when a phone linked to it is used to call 911.

ID cards

The Big Red Safety Box

Booklet for First Responders

Here’s one mom’s story from the Seattle Times.  

What measures have you taken to keep your child safe and to inform first responders of their diagnosis and behavior? Share your ideas and stories with others!