Sunday, September 18, 2016


“The time has come,” the Walrus said, “to talk of many things: Of shoes––and ships––and sealing wax, of cabbages and kings–­–“ ~Lewis Carroll
"The time has come," the mother said, "to talk of many things: Of greeting dudes––and autism, of power out and kings––"

As a teacher, some of my favorite moments are when students finally comprehend a concept that has eluded them. When the figurative light bulbs brighten above their heads, their eyes shine, and their smiles widen as they feel pride in that moment they finally understand. As Alex’s mom, I feel a tremendous sense of pride when he finally masters a skill he has struggled to learn because autism has impaired his nervous system in various ways. Those moments when enlightenment appears are precious because he feels a sense of accomplishment, and he revels in the praise we give him.

This week during his music therapy session, he demonstrated some real breakthroughs. Lately, his behavioral therapist has been working with Alex on greeting people without being prompted by us. For years, we have been saying to Alex, “Say hello to [whomever he needs to acknowledge],” hoping that through sheer repetition, he would eventually offer a proper greeting on his own. However, his therapist has suggested that we wait and allow him to say hello on his own without prompting. On Thursday, when his music therapist––who is the coolest guy we know––arrived, he greeted Alex by saying, “Hey!” Fighting my mom’s need to intervene, I watched as Alex formulated a response. It was worth the wait. He grinned at his therapist and responded, “Hey, Dude!” Since his therapist often calls Alex “Dude,” this response reflected their friendly relationship appropriately. Moreover, he also made his music therapist and me laugh with this unexpected greeting.

To move Alex away from OCD routines and to develop independent decision making, his music therapist has been encouraging Alex to choose songs for their session as they go instead of listing them all at the beginning. This spontaneity was a little difficult for Alex at first, but he seems to be adjusting and is becoming better at coming up with songs on his own. However, this week he suddenly shut down in the middle of their session. In the past, Alex might have waved his bent hand (aka the dreaded “claw”) in disgust or even grabbed his therapist’s arm to let him know he wasn’t happy. Instead, Alex simply became quiet, mulling over how to let his therapist know what was wrong. With some prompting and encouragement, Alex was able to express that he wanted to know how many songs they were going to do that day. After his therapist gave him the answer, he was able to continue happily through the rest of their time together, which shows growth in his ability to deal with anxiety. In fact, his therapist described their session as “fantastic” because Alex handled his upset so well and recovered quickly once he knew how things would proceed. Clearly, he is learning how to manage his concerns and communicate them so that he can receive the reassurance he needs.

Another unexpected incident allowed Alex to show how well he has developed coping skills in a situation that would have thrown him for a loop in the past. When I came home from work on Wednesday, Ed told me that the power had come on just minutes before I had arrived and that Alex had handled the morning without electricity amazingly well. Even though he had no Internet access for his iPad nor cable television to watch his beloved game show, The Price Is Right, he apparently never became upset and handled the unexplained power outage calmly. At one point, Alex pulled a flashlight out of the kitchen drawer. Ed thought perhaps he was imitating me because I carry around a flashlight during storms, always wanting to be prepared in case the lights do go out. Alex then headed for the dark, windowless bathroom with a flashlight in hand, ready to use the toilet. Instead of panicking about not being able to use the bathroom in the dark, he solved the problem independently. Apparently, my lessons about being prepared in the event of a power outage had made an impression on him. Without our prompting, he knew what to do, and we were pleased that he handled the entire situation so well.

Alex, however, isn’t the only one who sees the light literally and figuratively. Sometimes we enjoy the same sense of accomplishment when we solve the mysteries regarding something he’s trying to convey to us. Because of Alex’s idiosyncratic use of speech, he’ll sometimes say things, and we have trouble figuring out the context. For example, we still don’t understand why he used to say “Country Crock” whenever we talked about going to Ed’s office. Now that his speech is clearer, he can better explain to us why he says certain things that appear random on the surface but have some meaning to him.

Ever since he was little, I have regaled him with various goofy songs I know while grooming him. He has found these songs amusing and will sit nicely as I brush his teeth, shampoo his hair, and clip his nails. Once I started shaving his face, which he cannot do himself due to his poor fine motor skills and hand tremor, I added the silly ditty “Shaving Cream” to our repertoire. Every time I sang, “Shaving cream, be nice and clean. Shave every day, and you’ll always look keen!” he would immediately add, “Like Richard Petty!” I wracked my brain to figure out what the connection was between the famous NASCAR driver and this stupid song. Recently, he has begun singing along with me, and I finally figured out why he added his own line. He thought I was saying “king” instead of “keen,” and Richard Petty’s nickname is The King. Once I had my “Aha!” moment of enlightenment, I finally understood Alex’s addition to the song. Even after I explained what keen meant, we have gotten in such a habit of adding “Like Richard Petty” to the end that we continue it for old time’s sake and as a joke we share.

Through the years, we have known that much more was going on in Alex’s mind than he was able to share with us. However, as he has developed his coping skills and language skills over time, he has been better able to convey what he has been thinking. We are delighted that he can express himself more easily because not only can he share what he’s thinking and feeling, but he also shares a quick wit that entertains us. As we always suspected, beneath that quiet exterior lies an active mind, and we are thankful to have greater insights into our son, whose unique perspective enlightens us in new ways.

“Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1


Dollster said...

Pam, I love this story! WE also feel that our son, Seth has much more going on in his mind that we know and it's so great that your son is able to talk and share things with you. Did it take awhile for him to sit nicely while you are grooming him? We have daily issues with this area. He hates to have his teeth brushed, take a shower, etc......I keep hoping that he will calm down and learn to be ok with it, but it hasn't happened yet. We try to give him more control over it, like let him try to hold the washcloth or the toothbrush, but he has fine motor issues as well and has a very limp grasp. How awesome that he didn't get upset when the power was out! That is fantastic.

Pam Byrne said...

Hi Dolly,
Thank you for your kind words! We went through a phase where Alex hated to be groomed, and I suspect it was because of sensory overload. You are absolutely right about having to give them control to help them cope. For Alex, we deal with numbers: brushing teeth for two minutes exactly, combing his hair ten times exactly, counting his fingers as I clip his nails, etc. Fine motor issues are also a problem for Alex, so we still have to do many things for/with him.

We recently bought a Sonicare battery-operated toothbrush that he loves. All I have to do is move it around in his mouth, which is easier than manually brushing his teeth. He likes that it has an automatic timer (2 minutes), and the low humming of the toothbrush and its gentle motion seem to soothe him. He now faithfully reminds us morning and night that it's time to brush his teeth, so we're pleased with how that works.

Also, Alex hates showers, but he loves baths. I think the spraying of water from a shower makes him uncomfortable, but he likes soaking in a warm bath and seems to find it soothing. In fact, that's his favorite time of the day!

I keep praying for the day that all of our kids will be healed so that they, including your Seth and my Alex, can enjoy life to the fullest.

Take care,