Author: Lynn Vigo, MSW, LICSW

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.

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

5 Good Reasons to Participate in Autism Research

 

Research imageWhen my daughter was diagnosed at age two, I so wished there was a test that could tell us more than the fact that she met criteria for autism spectrum disorder. “Is autism in our family tree?” I wondered, thinking back to a quirky great aunt or two. “Did I do or not do something to cause this?” and “What specific treatments offer her the best chances for an optimal outcome?” were the other two questions that for years haunted me.

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Mindful Monday- Resilience

Resilience

We hear a lot about resilience, the ability to bounce back from adversity whether it is a devastating loss or the many smaller stresses we live with each day. TIME (Bounce Back, Mandy Oaklander, June 1, 2015) cites the work of two psychiatrists, Dennis Charney, dean of the Icahn School of Medicine at Mount Sinai in New York City and Steven Southwick, a professor of psychiatry at the Yale School of Medicine. “Resilient people seem to have the capacity to appropriately regulate the subcortical fear circuits under conditions of stress,” says Charney. The article cites research in the area including recent studies on the effect of mindfulness practices on building resilience.

 

Expert Tips for Resilience (from TIME Bounce Back)

  1. Develop a core set of values that nothing can shake.
  2. Try to find meaning in whatever stressful or traumatic thing has happened.
  3. Try to maintain a positive outlook.
  4. Take cues from someone who is especially resilient.
  5. Don’t run from things that scare you. Face them.
  6. Be quick to reach out for support when things go haywire.
  7. Learn new things as often as you can.
  8. Find an exercise regimen you’ll stick to.
  9. Don’t beat yourself up or dwell on the past.
  10. Recognize what makes you uniquely strong. And own it.

 

Quote of the week:

“Very few highly resilient individuals are strong in and by themselves. You need support.”  ~Steven Southwick, MD

Top 10 Questions Parents Ask Us at Seattle Children’s Autism Center

newtopten

 Questions? We get questions! With so much still not understood about ASD, our answers often don’t come close to what parents want to hear, yet we do our best to share what we do know and what we don’t know. Today we share some of the questions we hear most often at our center.

 

1. What caused my child’s autism?

We don’t know for every child. We’re working on it. But we do know that genetics is playing a very strong role in what causes autism. In fact, scientists can now identify the genetic contribution in nearly half of all children with a diagnosis of autism.

2. Did I do anything to cause it?

No. Although many parents feel guilty and worry about this, it is important to realize that you did nothing to cause autism.

3. Can autism be “cured”?

No. Treatments aim to improve functioning, but will not cure autism.

4. Will my child ever talk?

We just don’t know. Some kids with autism do, some never do. However, we do know that there are fewer children with autism who are minimally verbal than there used to be, likely a result of earlier intervention and behaviorally-based treatment?

5. What will my child’s future be like?

Unfortunately we are not able to predict with certainty what a child’s future will be. However, we do know that kids with ASD do make progress in skill development and overall functioning so continuing to help your child learn and grow is important. It’s hard to imagine your young child as an adult but keep hopeful your child and you will be different in years to come. Parents of teens and young adults often attest to this?

6. Do I have to do everything you’ve recommended to us?

No. You’re the expert on your family and the best recommendations are those that fit with your family’s values and capabilities. We provide you with a number of recommendations knowing that only you can decide what you can and cannot do. You might ask your provider to prioritize those that you feel you are able to do. There are many variables that come into play such as insurance coverage, access to services, financial ability, and competing demands in your life.

7. How do I get my child to stop (fill in the blank with your child’s challenging behavior)?

You may never get your child to completely stop. The core behaviors associated with ASD are stubborn and difficult to treat. However, behaviorally-based interventions can be effective in addressing challenging behaviors, reducing those disruptive behaviors, and increasing appropriate behaviors.

8. Is there a medication to help my child with (fill in the blank with your child’s challenging behavior)?

Maybe. There are a number of medications that have been supported by the scientific literature to help address behaviors that are sometimes associated with autism. For example, to reduce self-injurious and aggressive behavior, medications have been shown to be effective. Similarly, many of the medications that are used to treat depression and anxiety in children without autism work may well for children with autism. Medications to reduce hyperactivity and impulsivity can also be effective at reducing those behaviors in autism. Keep in mind, there is no medication that cures autism or that works for every child in addressing challenging behaviors. Work with your provider to assess your child’s unique issues.

9. How do I get my child’s school to (fill in the blank with what you wish your child’s school would do)?

Educate yourself and them, pull together resources for yourself (i.e.: an education ombuds, Wrights Law, fellow parents), approach them with a spirit of collaboration and partnership, be realistic in your expectations, and be respectfully persistent, citing precedents if possible.

10. How do I explain autism to others?

You can tell them that it is a developmental disorder that affects social and language skills and often includes repetitive behaviors, specific interests, and/or sensory sensitivity. Our blog is also a good resource to help people understand ASD. In particular, two blogs on why our kids do what they do might be helpful. (Why Do Kids With Autism Do That? Part I and Why Do Kids With Autism Do That? Part II)

Have a question about autism? Write to us and we’ll do our best to answer.