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

Recent Trends

Although I’m almost afraid to comment for fear of jinxing things, Alex’s obsession/anxiety/frustration about the computer game Monopoly Junior seems to be fading. On Friday, we took him to McDonald’s, where large posters advertised the current Monopoly sweepstakes, yet he did not seem fazed by the reminder of the game that currently annoys him so much. On top of that, as I waited in line, I saw promotional placemats with the Monopoly character Uncle Moneypenny and decided to get one for Alex, stupidly forgetting that his former love of the game has turned to hatred. As I brought him the placemat depicting the Monopoly logo and main character, Ed shot me a look as if to ask, “Are you crazy?” Trying to avoid the wrath of Alex, I suggested that I hold the placemat for him, but he seemed amused by the placemat rather than incensed. Thankfully, he accepted the Monopoly placemat in the spirit I had intended and didn’t hold my foolish gesture against me. However, that placemat found a home in the garbage soon after we came home—I wasn’t taking any chances that reminder might upset Alex.

Besides being pleased to hear less complaining about Monopoly Junior, we’re also happy to see that Alex has completely returned to his energetic self. During his bout with lethargy in the late spring and early summer that his chiropractic internist diagnosed as allergic shutdown, Alex would sleep twelve hours every night and lie on the couch most of the day, too tired to do much of anything. Over the summer, he gradually regained his former energy levels and now sleeps normally at night and acts as though he feels much better, bouncing through the house as he did before. Despite these positive changes, we’re also somewhat perplexed by some other recent trends we’ve seen in Alex. For example, his eating habits have changed a bit. Specifically, Alex has always savored his food, taking his time to enjoy a meal. We figured this was a trait he inherited or learned from Ed, who also takes his time to eat a meal. As one who eats rapidly (which I blame on childhood years of eating in the school cafeteria, where I had to inhale my food to make sure I finished lunch in the short amount of time we were allotted), I find myself constantly waiting for Alex and Ed to finish a meal. Lately, Alex has also taken to eating rapidly, downing his food as though someone might steal it from him, then looking earnestly at Ed to gain permission to be excused from the table. I’m guessing that he hurries to eat so that he can go do other things he wants to do, such as watch television or use his computer. Although we’re surprised by this sudden change, we’re thankful that he has a hearty appetite, eats a good variety of foods, and never complains about what food is put before him.

The most surprising difference in Alex has been his current aversion to grooming. Previously, Alex loved being groomed and seemed to crave the sensory stimulation he gained from having his hair combed or his teeth brushed. He actually enjoyed having me cut his hair, even asking for haircuts long before he ever needed them. In addition, he liked getting a shave, to the point he would smile so much as I used the electric razor that I had trouble getting his upper lip shaved. Currently, he is in need of a haircut and a shave, which gives him sort of a rumpled look. Thankfully, he willingly bathes daily and will barely tolerate brushing his teeth, which I insist he must do. As for the shaggy hair and whiskers, I’ve decided this battle isn’t worth fighting so long as he keeps his hair and face clean. While I tend to attribute most trends to autism and sensory issues, I suspect he is probably just engaged in some form of teen rebellion with regard to his hair and beard, and the less we say, the better. I guess it could be worse; I’ve seen pictures of Ed when he wasn’t much older than Alex, and his hair was much longer, or he could be like my nephew, whose mother wasn’t thrilled when recently shaved part of his head to create a Mohawk for his senior football season. Fortunately, phases usually don’t last long with Alex, so I’ll try to wait patiently until he decides that he’d like a haircut and a shave, just so long as he doesn’t start talking about Monopoly Junior again.

“Gently instruct those who oppose the truth. Perhaps God will change those people’s hearts, and they will learn the truth.” 2 Timothy 2:25

Haircuts

In becoming a mother, I knew there would be a variety of roles I would have to assume, including teacher, nurse, cook, and chauffeur. The one job I had never anticipated having to learn was barber. As I was cutting Alex’s hair the other day, I realized that I have been his personal hair stylist for more than fifteen years now. Fortunately, he likes the way I cut his hair, and his hair is easy to manage, straight and medium in texture—pretty much the same as mine, even in its color. The only tricky part is dealing with a couple of cowlicks he has, but I have learned to tame them over the years. The best part about cutting Alex’s hair is not the money that we save by my doing it for free, but his cooperation and even contentment as I trim his hair. He is always ready and willing to have his hair cut and seems to look forward having it done every four to six weeks. He’ll sometime come and ask me to cut his hair even when it doesn’t really need a trim, and I have to assure him that his hair is fine. As I cut his hair, he sits as still as a stone, yet he seems pleased to have me working on him. This calm attitude lies in sharp contrast to his earliest experiences with having his hair cut.

When he was little, we took Alex to the barber exactly three times before deciding this was not an option for him. The first time, I took him to an elderly gentleman who was very sweet with Alex and his tears all during the haircut, but he seemed to feel bad that Alex was upset. The next time I took him with my dad to my dad’s barber, who gave Alex a good haircut despite his constant crying. This barber, however, scolded Alex for crying, which put me on the verge of tears. The next time, I told Ed that he could take Alex to the barber since I found it heart-wrenching to watch him sob during his haircut. This time was apparently the worst for Alex because he came home with his face and eyes red and bits of freshly-cut hair mixed with tears and snot all over his face from crying so hard. Ed, upset by Alex’s tantrum, was not eager to take Alex back to the barber again after that experience. All three of these times at the barber occurred before we knew that Alex had autism, and looking back, I’m sure he was having meltdowns because of sensory overload, probably from the buzzing of the hair clippers and perhaps from the pulling of his hair as it was cut. Nonetheless, I decided that we would either have to let his hair grow, or I would have to learn how to cut a boy’s standard haircut. Opting for the latter choice, I bought a home hair cutting set with clippers and attachments, scissors, and a video showing how to cut hair. In my usual fashion, I watched the video several times, even pausing to write down notes and draw diagrams, before I was ready to tackle Alex’s hair. Because he had been so upset by his other haircuts, I knew that I would have to work fast and hoped that Alex wouldn’t be too hysterical, and I prayed that the first haircut I gave him wouldn’t be awful. Thankfully, the tips I’d learned from the video helped, and his haircut actually turned out fine. The most surprising thing, however, was that Alex never cried or became upset the entire time I cut his hair. Moreover, he was more cooperative than one would expect from a very young boy, and I was grateful that this was a pleasant experience for both of us.

Through the years, he has continued to be congenial during our home haircuts. When the weather is warm, we trim his hair on the screened porch, and when the weather is cold, our kitchen doubles as a barber shop. He and I like to listen to country music CD’s while I shear the back and sides of his head with clippers and trim the top with scissors. Sometimes he will play handheld electronic games to entertain himself during the haircut, pausing at times to brush off stray hairs that have dropped onto his game screen. For many years, I used an old towel with a hole cut in the middle for his head to keep the clippings off his clothes, but now we have a hairdresser’s cape that I bought at a beauty supply store, which works much better than the towel ever did. In all the years I’ve been cutting Alex’s hair, I’ve only had one minor mishap. As I was using clippers, they became stuck in a tangle, pulling off the haircutting guide comb, and he wound up with a small bald patch in the back of his head. Fortunately, a ball cap covered it nicely until it grew back, which didn’t take long. We never told him about it, so he was none the wiser. Now his main concern is that he has enough hair left in the front to twist with his fingers while he is thinking, but he prefers that the rest of his hair be kept short, which makes hair care easier for him. Every time I cut his hair with good results, I’m pleased that I was able to learn a skill I’d never thought I’d have to master out of necessity.

“I will be your God throughout your lifetime—until your hair is white with age. I made you, and I will care for you. I will carry you along and save you.” Isaiah 46:4