Sunday, September 28, 2014


This week, I happened to run across a blog entry written by a woman who works with children who have autism, and her words made me reflect upon what makes Alex truly special. In her blog entry “Where Does Your Child’s Soul Shine?” Tali Bergman notes, “Sometimes in our desire to teach a child skills, we end up focusing on all the areas that are most challenging for that child, and what can begin to happen is that a child’s natural delight and enthusiasm in the world (i.e. his shiny soul) can begin to slip away or dim.” She goes on to comment, “But the truth is, it is this shiny soul that will drive all meaningful learning and growth for your child. It is this shiny soul that your child was meant to bring to this world.” Finally, she leaves the reader with an important question, also the title of her blog post: “Where does your child’s soul shine?”

As I reflected upon her words, I realized that so much of what I do as an autism mom is trying to fix what is broken. I try to make sure Alex gets all the proper therapies so that he can overcome the communication and social skill obstacles autism has put in his path. In addition, I constantly seek the best medical care for him so that he can be as healthy as possible and avoid any ailments that may cause him pain. In addition, Ed and I engage him in activities that keep his mind sharp and push him to engage in the outside world that can easily overwhelm him. Most of all, we never give up hope that Alex will get better, and we continually encourage him to make progress in both small and big ways.

For several years, we kept Alex mostly hidden away from the world, not because we were ashamed of him, but because we knew that taking him out places meant too many unpredictable stimuli that could upset him, and we didn’t want other people bothered by having to witness potential outbursts that could arise. We were protecting Alex from the world and the world from Alex. With the encouragement of Alex’s therapists, however, we have realized that he needs to be out and among other people so that he can learn to interact with others and to deal with various sensory issues appropriately. To help him, we have worked with his therapists to teach him social skills and coping skills so that he knows how to behave in public and how to calm himself when he becomes overwhelmed. To be honest, we have been pleasantly surprised how well Alex has handled a variety of situations that we feared would overwhelm and upset him. Instead, he finds joy. While we thought we were doing the right thing to keep him in situations that were safe and predictable, we now understand that he needs to be around other people. We focused our work on controlling his behaviors, but never trusted him enough to allow him freedom to practice the skills we were teaching. In a sense, we were keeping Alex’s light under a bushel.

For what I now understand is that what makes Alex’s soul shine, what he was meant to bring to this world, is his joy to share with others. When he orders his food in a restaurant, he is met with patience and kindness, even though he has some trouble telling what he wants. When we cue him to thank people who have done something nice for him, he is rewarded with warm acknowledgements. When Alex smiles, showing his delight in everything, other people see that irrepressible joy and smile back at him. One of the most delightful sounds I know is to hear one of Alex’s therapists laughing with him, knowing that he has amused them with some funny comment and brought them joy. Even better is to have them tell me how much they enjoy working with him, how they look forward to seeing him every week, or simply, as one told me last week, “He’s awesome!”

One of the often-cited characteristics of autism is the inability or unwillingness to share observations and experiences, which may be a communication and/or social skills issue. Recently, we have seen tremendous gains in this area with Alex, who frequently and gleefully comes running to tell us something he’s seen on television, something he’s read on the Internet or in a book, or something he just remembered. His enthusiasm is contagious as he excitedly shares this information, his face and voice expressing joy not only in finding that tidbit of news but also in knowing how happy we are that he wants to tell us. Instead of keeping things to himself, he wants to include others in his happiness.

While we don’t know what the future holds for Alex—although we pray that healing will allow more possibilities to arise for him—we feel assured that God knows what Alex’s purpose in life will be. In the meantime, we do know that what makes Alex shine is his joyful approach to life. Little things can make him happy, and he wants to share that joy with others. Frankly, I can’t think of a better purpose to have in life.

"Those who are wise will shine as bright as the sky, and those who lead many to righteousness will shine like the stars forever." Daniel 12:3


K. C. Wells said...

Beautiful! Thank you for the reminder that everyone has a light to shine.

aspiegurl said...

I found this blog through a web search. When I was 6-7 until I was 10-11, I liked to watch and read about sports. Then, I had other interests until I was 21. From the 2011 Daytona 500, I've watched NASCAR again, as well as other motorsports sometimes and even some basketball. We don't have cable TV at home, so I've been following the Dover race on RaceTrax. I was diagnosed with Asperger's when I was 4, Now, I'm 24, 25 in November

Dawn Marcotte said...

Nice post - thanks for sharing. I know with our daughter we discovered that she liked to share with us, but only at bedtime. Even today she prefers to talk to me at bedtime, rather than when I get home from work or at the dinner table etc. Sometimes we have to just take them where they are and work with it.

Pam Byrne said...

Dear K.C.,
Thanks for your sweet note! Hope you are doing well.

Pam Byrne said...

Dear aspiegurl,
Alex is also a big NASCAR fan. I think he originally liked it because of all the numbers on the cars and the statistics about speed, tracks, and positions. Now he follows his favorite drivers and understands more about the sport. Thank you for your comments. :)
Take care,

Pam Byrne said...

Dear Dawn,
That's interesting that your daughter likes to share at bedtime. I wonder if there's a relaxed feeling that makes her more likely to express herself easily. Alex is always more affectionate at bedtime, perhaps because he, too, is more relaxed. Thank you for your note; I'm always interested in comparing notes with other autism moms.
Take care,