Sunday, December 28, 2014

Repeat the Sounding Joy

Yesterday, I read an anecdote written by an outstanding autism mom blogger whom I admire and respect that made me reflect on not only how far Alex has come over the years, but also how much I have learned from time and experience of being an autism mom. In her story, which she asked other parents to share online, she told of recently taking her young son with autism to get a haircut at a salon. When he began to squirm, the stylist told her that she could not cut his hair safely because she was afraid she might cut him. His mother explained that he has autism, and the stylist refused to cut his hair. Undeterred, the mom took her son to another salon, where a stylist successfully cut his hair and kept her son calm in the process. However, she was still angry that the first salon turned them away, citing discrimination because her son has autism and noting that parents of children with autism should not have to tolerate this kind of treatment.

The comments on Facebook that followed her story and response to what happened basically fell into three categories. Most people who commented were fellow autism parents who shared her anger and demanded action against intolerance toward children with autism. A few defended the actions of the first stylist, noting that she honestly explained her fears of hurting the boy. The third group shared their own bad experiences with their children’s haircuts that led them to find more patient stylists or more often to cut their children’s hair themselves. Had I made a comment, I would have fallen into that third category, the walk-away-and-move-on-with-life autism parent. After a few bad experiences with having Alex’s hair cut at the barbershop (through no fault of the barbers, who handled him remarkably well) when he was young and had sensory issues, I decided to learn how to cut his hair myself. Perhaps because we were not refused service, I didn’t feel the righteous indignation she described. Moreover, I tend to avoid confrontation and would prefer to walk away from uncomfortable circumstances than to make a point.

As I considered the story of the mom who wanted everyone to know that a stylist who could not cut her son’s hair denied him a haircut, I wished that she had focused on the positive outcome instead. Certainly, when anyone rebuffs our children, we feel anger that someone treats our children badly. As autism parents, we feel perhaps even greater indignation because our children’s disability makes their lives more difficult. On the other hand, over time I have found that people who walk away from our children are a blessing. In our experience, we have found that as professionals who worked with Alex have left for various reasons, their replacements were even better because they provided what he needed at that time. Those who cannot or do not want to work with our kids have no place in our lives. When they close the door, we look for the windows, the opportunities to find better alternatives. For her, she found a stylist who was willing and able to cut her son’s hair. For me, I decided to master a new skill, learning to cut Alex’s hair myself, which has made our lives easier and saved us a few bucks in the process. In addition, this tackling of something I didn’t think I could do developed my confidence so that I could take on other tasks, such as learning to give Alex vitamin B12 injections. Over the years, I have learned that nothing is wasted in life, or as the last line from one of my favorite movies An Unfinished Life wisely states: “And it looked like there was a reason for everything.” Often, the disappointments lead us to circumstances even better than we could imagine.

Several years ago, we realized that Alex couldn’t handle celebrating Christmas with the extended family. Although we tried everything we knew to make the family gatherings less overwhelming for him by giving him time and space away from the group, he found the experience upsetting. The last Christmas we celebrated as an extended family, we left with Alex and me both in tears, he in sensory overload and I in emotional overload that he was so upset. After that, we decided to celebrate Christmas at home with just the three of us, quiet and peaceful, yet disappointed that we could not be with the rest of the family. To ease the sense of loss, family would come to visit us in smaller groups that Alex could tolerate. While this compromise was the best solution for our circumstances, we hoped that someday we could celebrate with a family gathering on Christmas, as most families do.

Thanks to healing from medication, therapy, time, and answered prayers, Alex was finally able to enjoy a family gathering on Christmas this week. Instead of being overwhelmed by all the activity inherent when fourteen people and a dog are in the same room, Alex was happy to be with people he loves and who love him. Not only did he behave appropriately, but he also was content to be in a situation that used to upset him. After all these years, we finally had the family Christmas most people take for granted. While I was tempted to mourn for the lost years, wistful for what we had missed and what autism had taken from us, I focused instead on gratitude for what we had been given. Moreover, this Christmas has been even sweeter because we had to wait for that “typical” Christmas denied to us for so long. What was once bitter is now only sweet, and our joy is an even greater blessing, making us look ahead to the new year with anticipation and expectation that 2015 will be our best year yet.

“Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours.” Isaiah 61:7


Bright Side of Life said...

I like your attitude towards people who come into contact with our children. I strongly feel that it is a waste of time and energy getting all het up over being slighted.... I feel that if we show our anger etc then we are also confirming to the public that autism parents are not the easiest people. My mantra is... Smile and wave, and move on. Thrilled for you that you all got to experience a family Christmas.

phyllisbizeemom said...

I just love the way you look at things, Pam! ("When they close the door, we look for the windows, the opportunities to find better alternatives.")

Your positive attitude is a big reason why I really enjoy your blog!

Thanks for the positiveness! Take care & God Bless! :-)

Pam Byrne said...

I appreciate your kind comments, fellow autism moms! Here's praying that our kids continue to make good progress, that scientists are finding new ways to help our kids, and that 2015 is our best year yet. :) God bless both of you and your families!
Take care,