The Autism Blog

Autism and Coping Tools for Parents – Part 1 : Finding Meaning

Tool Time (2)

 

Today we start a series aimed at building your parent coping toolbox, because we know you can’t have too many tools when it comes to the ongoing challenges that autism presents.

We’ll discuss finding meaning in challenges, using humor and humility in the midst of adversity, reframing challenges, surrender, grace, intelligence, courage, patience, and support – and perhaps a few more.

We also invite you to share the tools that work for you. At the end of the series, we hope we all have some new tools at the ready for whatever life hands us.

I’ll start us off with finding meaning in adversity. Keep in mind, this series will be written from each parent-author’s personal perspective and is not intended to reflect or represent any more than just that.

Life isn’t fair!

When bad things happen to us, we have a tendency to feel singled out and a sense of injustice surfaces. “Why me?” or “Why do bad things happen to good people?” we ask, and wonder what we did to deserve such hard luck or bad karma. Even smart people let superstition creep in when trying to make sense of difficulties. It’s curious that our brains don’t seem to put as much effort into wondering why good things happen when they do.

Some call it making lemonade out of lemons or finding the silver lining. Whatever you call it, we do know that whatever the difficulty, being able to find meaning in life’s challenges can help make them a bit easier to deal with, particularly with those things we cannot change.

Ironic, isn’t it?

My family’s story of autism had quite the twist of fate. It was 1981 when I moved to Colorado with a shiny new degree in hand, eager to save the world. I thought I wanted to work with kids.

There were just two problems with this plan: unemployment was sky high and it seemed everyone and their grandmother had a PhD plus twenty years experience. This meant I had three part time jobs, none of them with children. In one, I interviewed clients for a video dating club – and that is quite another story!

In another, I was a counselor in a new group home for young adults with autism. A forward-thinking mom of a teen bought a rambling house in the foothills and got it licensed. Six clients ranging in age from 20-40 moved in and we provided 24-7 care for them.

In college I had observed a classroom of children with special needs, including autism. It was fascinating for me to observe the same behavioral traits in adults that I’d seen in the young kids. I recall being perplexed by what, at the time, I’d heard about the cause of autism – these were children of supposed “refrigerator mothers”. This was a time when the “nurture” part of the “nature vs. nurture” debate was given greater weight. Genetics was years away from taking center stage.

As interesting as it was, this was not an easy job. We didn’t get much training in autism or how to handle behavioral challenges, which meant we did a lot of improvising and sometimes got hurt. I was a shy young twenty-something with little experience. Keep in mind, there was no early intervention at that time. These kids didn’t even have the right to go to school and their parents were told at diagnosis to place them in an institution. This is primarily where our clients came from. I left that job thinking very decidedly that this was too hard and that

 Autism is not my life’s work

Fast-forward to 1999, when my nephew was born with Down syndrome. My sister didn’t know prior to his birth so it was a surprise and an adjustment. Well-meaning people gave her lots of unsolicited advice including this from a friend who is a teacher’s aide:

Just be glad it isn’t autism

It was right about this time that I could no longer ignore the subtle but growing red flags that I was seeing in my baby girl. She stopped responding to her name. She stopped playing with toys and instead repetitively tapped kitchen utensils on the floor. I was hesitant to share this with my family. It almost seemed as if I was trying to one-up my sister. And those words kept reverberating in my head: Just be glad it isn’t autism. Autism is not my life’s work.

Well, as they say, you know the rest of the story. She was diagnosed that summer and it was devastating for us.

Finding meaning didn’t happen overnight. It also didn’t happen without effort. It was a conscious choice to move from the place where it was hard for me to share the simple joys of friends who seemed to have so much to celebrate, while we seemed to be hanging on by a thread. There were days when I’d look at people and wonder how they could smile and what they could possibly be happy about. Like a message in a bottle washing ashore from a troubled sea, I realized that staying stuck in strong emotions wasn’t going to help her or me. New thoughts popped up:

Why not me?

 I have what it takes.

I can do this.

How did I find meaning? The easy answer is through curiosity. I began asking myself questions about how and why I arrived at this point in my life. After some uncertainty in young adulthood, wondering what my purpose on the planet was, I felt certain that I wanted to be a mom and work in a helping profession. It would take many years before I would see how these two goals would dovetail. These are some of the questions I asked myself:

What skills do I have that I bring to this challenge?

 What other challenges have I handled well?

Who can I learn from in the areas where I feel unsure of myself?

I looked for parents who were one step ahead of me and gleaned what I could from them. After getting some experience under my belt, I began to volunteer as a mentor for parents new to the diagnosis and signed up for other parent projects. I soon realized that helping others helped me.

As they (once again) say, you know the rest of this story. For nine years now, I’ve had the honor of working alongside the best here at Seattle Children’s Autism Center, doing what we can to make life a bit easier for families. And for at least that long, I have known what my purpose on this planet is:

Be the best mom I can be

Help others

Not so shiny tools

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up, I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.” 

Anne LamottTraveling Mercies: Some Thoughts on Faith  

Have you found meaning in your challenges? Share your story with us!

Stay tuned for Part 2 of our series on parent coping tools.

Understanding Developmental Disability Administration (DDA) – This Month’s Autism 200 Class

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This month’s Autism 200 Series class “Understanding Developmental Disability Administration (DDA): New Pathways to the Future” will be held Thursday, May 19, 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. This class will be led by Ed Holden, Executive Director, Developmental Disabilities Council.

Mindful Monday- The Pause That Refreshes

The Pause That Refreshes

In our crazy busy lives, we don’t often pause.

Stop. Halt. Cease. Be.

We go. Move. Hurry. Worry. Do.

How do we even begin to slow down?

One small step at a time.

 

 

Mindful Exercise (from Rubin Naiman, PhD in a year of Living Mindfully)

At a time when you feel calm, jot down a few situations that caused moderate to significant reaction – perhaps irritation, anger, anxiety. Could be getting the kids out the door. Or being stuck in traffic. Or feeling burned out at work. Think of ones that tend to recur. 

Select one and for the next week, have the intention of pausing inwardly in the midst of the situation if/when it recurs. For no more than 60 seconds, try to offer a nonjudgmental, neutral appraisal of what’s happening. Take deep breaths. Notice how your body feels. Instead of “I’m going to be late for work again!” try, “Traffic is bad today. I’ll get to work when I get to work”. 

See if you notice any difference between reactivity vs mindful awareness. With practice, you will. 

Quote of the week:

“Life is lived in the pauses, not the events.” – Hugh Prather, Morning Notes: 365 Meditations to Wake You Up

The Autism Blogcast with Jim and Raphe-May Edition

News Flash: The May 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!

Ask Dr. Emily- Asperger’s and Screen Time Questions

Welcome to the April 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 here, on the last Friday of each month, 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: My 16-year-old son was diagnosed with Asperger’s when he was very young. My friends and other people have told me that “Asperger’s” is no longer the term used to describe his level of functioning. What is the correct term to use when talking about him to teachers and other parents so they understand?

A: A new version of the Diagnostic Statistics Manual-5th Edition (DSM-5) was released in 2013. The previous version of the DSM (DSM-IV-TR) described three diagnoses: Autistic disorder, Asperger’s disorder, and pervasive developmental disorder, not otherwise specified [PDD, NOS]. All three of these disorders were considered “autism spectrum disorders.” The current DSM-5 discontinued the use of the three specific diagnoses and, at present, provides only one diagnosis: Autism spectrum disorder (ASD). The way we now describe “functioning” is to qualify whether an individual presents with intellectual impairment and/or language impairment.

Many individuals historically diagnosed with Asperger’s could be described by today’s DSM-5 standards as “autism spectrum disorder without intellectual impairment and without language impairment.” Because the term “Asperger’s” was used for so long, and so many understand it well, it is not uncommon for individuals, families, and providers to continue using the term in conversation to describe presentation and/or functioning. Bottom line: Keep using the term, if it helps you communicate with educators and others, but know that there are new official terms out there.

 

Q: What is the thinking about the impact of screens on kids with autism?  I know that limiting screen time for typical kids can impact their brain and social development.  Screen time seems to be a form of comfort for my autistic teenager after a long day at school, etc…   Texting has provided a great way for her to socialize with her friends but more on her own terms.  And texting seems to be a great tool for she and I to have a difficult conversation – it seems to be less charged and conflictual that way.   Is there any research and/or guidance for the healthy way to reap these benefits without affecting brain development in a negative way?

A: This is such a great question and one that I hear often. Research tells us that screen use (i.e., T.V., video games, computer games) in typically developing children is correlated with several negative effects on development. Specifically, increased screen use in typically developing children is correlated with delays in language development, reduced social interaction, less sleep, poorer school performance, higher rates of obesity, social skills challenges, impulse control challenges, and inattention/lack of focus. Earlier start age has been correlated with language delays and executive functioning delays (like attending, planning, and resisting impulses). These results make sense, right? Time spent on media is time NOT spent interacting with and being active participants in the world and people around them.

Research regarding media use in individuals with autism spectrum disorder (ASD) tells us that children with ASD spend more time using screens on a daily basis compared to their typically developing counterparts. Bottom line, kids with ASD are getting more exposure, which puts them at potentially higher risk for experiencing the deleterious effects of media mentioned above.

Regarding recommendations, the American Academy of Pediatrics (AAP) offered their recommendations in 2011 regarding recreational screen time use. Specifically, the AAP recommends that children under age two not engage in screen time at all. Between the ages of 2 and 18, the recommendation is between 1-2 hours, with no more than two hours per day. Yes, children these days are more and more engaging in screens as a way of staying socially connected. And many kids with ASD, specifically, endorse media/screen time as their most preferred activity. Thankfully, nothing out there is saying that we cannot use screens, however, moderation is the key. Thus, setting limits, creating balance, and providing alternative activities can teach kids how to set healthy boundaries for themselves as they grow into adulthood.