Monthly Archives: September 2014

Dealing With Stress

I recently read an article that appeared in the New York Times entitled When the Caregivers Need Healing. The article notes that while ” all parents endure stress, studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future- all of it can be overwhelming.” The article goes on to discuss a study published in the journal Pediatrics regarding two approaches that were utilized to help parents deal with their stress. “The first group practiced meditation, breathing exercises, and qigong practices to hone mental focus. The second received instructions on curbing negative thoughts, practicing gratitude and reclaiming an aspect of adult life.” Both groups experienced significant reduction in stress, anxiety, depression as well as improved sleep and life satisfaction.

I do not want to imply that being a parent of a son or daughter with Autism does not have many wonderful moments, it certainly does. However there is no doubt that there are stressful times in supporting a son or daughter with communication and sensory processing difficulties and often medical issues. All of these challenges can lead to frustration and feeling overwhelmed not only for them, but also for us as parents, trying to figure out what is going on and how to support them during these stressful times. As I grew older, I recognized that if I was going to be able to continue to support my son with his challenges without it depleting me, I was going to have to really focus on how best to deal with my stress.  By the way, you do not have to wait to be older to find something that can be helpful!

I began a mindfulness meditation practice and have learned to deal with difficult emotions, such as frustration and sadness, in more mindful ways.

“Here are a few key components of practicing mindfulness that Kabat-Zinn and others identify:

  • Pay close attention to your breathing, especially when you’re feeling intense emotions.
  • Notice—really notice—what you’re sensing in a given moment, the sights, sounds, and smells that ordinarily slip by without reaching your conscious awareness.
  • Recognize that your thoughts and emotions are fleeting and do not define you, an insight that can free you from negative thought patterns.
  • Tune into your body’s physical sensations, from the water hitting your skin in the shower to the way your body rests in  your office chair.”

I have found the teachings of Pema Chodron, an ordained nun in the Shambhala Buddhist tradition, to be enormously helpful. She has focused a lot of her teaching on dealing with frustration, sadness, and other difficult feelings. A few of the titles to the many books she has written are, When Things Fall Apart, Heart Advice for Difficult Times and The Places that Scare You, a Guide to Fearlessness in Difficult Times, and Getting Unstuck: Breaking Your Habitual Habits and Encountering Naked Reality. As you may guess, many of our habitual ways of dealing with things that are stressful are not in the long run helpful to us or anyone else. We often bury anxiety and frustration or act out of it with aggression toward ourselves (who has not given themselves a hard time about something they were thinking or feeling) or others (who has not yelled at someone while driving).  Imagine that, we may have habitual ways of reacting that are not helpful, and we don’t have Autism Spectrum Disorder! Thinking about how we may habitually react in ways that are not helpful can make us feel more compassionate toward our sons and daughters when they struggle, and toward all others who are struggling and acting out in their own habitual ways. It takes work to recognize our reactions that are not helpful and then to learn more helpful ways to deal with our stress.

Mindfulness meditation is not the only form of meditation. Indeed, repeating prayers is a form of meditation, although meditation is not tied to religion. Just Google meditation techniques and you will find lots of information about meditation and its’ benefits.


The Importance of Mentors for Tweens, Teens and Adults with Autism

By Jan Randall


“A mentor is an individual, usually older, always more experienced, who helps and guides another individual’s development.” F. John Reh

A few years ago I was part of a group of 10 parents who were chatting during a break at an Autism event. We all had boys who ranged in age from 12 to their 20s, and all are on the more challenged end of the Autism Spectrum. As we talked our conversation turned to the behavior challenges that we were currently dealing with, or had faced in the past.

Later as I thought back to our discussion, I was struck by the fact that all of our children who were going into the community with a mentor or support person on a regular basis, doing things that teens like to do, were doing well. Conversely, the guys who were having more behavior challenges were the ones who were coming home from school and spending the afternoon and evening sitting in front of the TV, computer, or doing some other kind monotonous activity.

My realization, that kids getting out, being active and having fun with someone who cares about them didn’t really surprise me. I’ve been talking about the importance of mentors for our kids for years. My 28 year old son Andrew has steadily had a mentor in his life since the age of 11. But Andrew’s first mentor came into his life when he was only 8 years old.

We had just moved Andrew from a private Autism school to public school. Although he spent most of his day in a self-contained classroom, part of his day was spent in a typical first grade class. Shortly after the start of the school year I got a phone call from a young man named Sean. He told me his little sister was in Andrew’s first grade class. He then explained that he was a high school senior and in order to graduate he was required to do Community Service. He asked if I be interested in having him do his Community Service with Andrew.

At first I was a taken aback by the thought of my son being a community service project. My other concern was Andrew only had about 30 words and it wasn’t unusual for him to get confused or frustrated and have a meltdown. The prospect of having Andrew out with a 17 year old who had zero experience with Autism was scary, to say the least. But the more I thought about it, the more I thought that this was a terrific opportunity not only for Andrew but for me as well. Andrew could have fun with a “big brother” and I could get a much needed break for 90 minutes a week.

We started by having Sean come to our home to meet Andrew and spend time talking to me, so he could understand Andrew better. Then, over the next few weeks, Sean and Andrew played basketball in our driveway so I could support Sean as they got to know one another. After about a month it was time for them to go family swim at the Y, Andrew’s favorite activity. The first week I drove Andrew to the Y where we met Sean. I stayed to watch them in the pool and when swim was done I left and let Sean take care of Andrew and drive him the 2 miles to our home. Their relationship continued for the rest of the school year and ended when Sean graduated in early June.

Andrew’s next mentor came when he was 11. This time it was Kevin, a college student who was in his early 20s. Initially Kevin started by coming to our home to do activities with Andrew. It was the winter, so they would bake cookies or brownies. As they got to know one another they would go sledding, and out to other places in the community.. I’ll never forget the afternoon Kevin brought Andrew home and I asked him where they had gone. Kevin responded “a café”. I was shocked, a café? Seriously? I would never have imagined bringing Andrew to a café, but to Kevin it was no big deal. After walking around Providence they stopped at a quaint little café, Kevin sipping coffee and Andrew having hot chocolate and cookies. Andrew had a blast and I learned a valuable lesson about not putting limits on what Andrew might enjoy doing.

Jay and Andy0001

Over the years Andrew has had over 25 mentors. The majority have been college students, and I am pleased to say that they have gone on to some wonderful careers, including: surgeon, nurse, college professor, speech & language pathologist, social worker, art therapist, and teacher to name a few. I know that their experiences with Andrew and our family have taught them so much, and that what they have learned they have been able to carry into their lives.

What they have given Andrew cannot be described in a few short sentences, so I’ll close with a quote from Tara, former teacher, mentor, and forever friend: “It is a well-deserved and WELL-EARNED title to be considered one of Andrew’s friends. I earned this title by sticking in there through thick and thin, by letting him lead me to what works with him, and by endless patience and acceptance. Once I ACCEPTED him for who he was, I not only learned how to get along with him, I learned how to love him- that made all the difference in teaching him.”