Category Archives: Sensory Issues

The Boy and the Vacuum Cleaner

[This post was originally published at Hopeful Parents]

Once upon a time there was a little boy who had autism. He did not start talking until he was five years old, and he often screamed and butted his head into people and walls to indicate his frustration. He also had agonizing sensory issues that made it impossible for him to filter loud noises, and he would scream and bolt whenever someone turned on a mechanical device in his presence. He would be disturbed by leaf blowers more than a block away, and the vacuum cleaner in the house was such an assault on his hearing that he would fly into a panic if anyone so much as walked in front of the closet in which it was kept. His parents would try to “sweep” the carpet as often as possible to avoid using the vacuum cleaner. When they absolutely needed to use it, one parent would take the little boy outside and comfort him while the other parent vacuumed.

After some time, the little boy’s parents divorced, and the mother would vacuum whenever he was visiting his father’s house. This went on for a few years, and then the father moved farther away, and the little boy could not visit him weekly. By this time the little boy had started learning to talk, and when it was time to vacuum, the mother would take him to his bedroom, show him how to cover his ears with a pillow, and shut his door while she quickly vacuumed.

It went on like that for several years. The mother would always notify her son before she would turn on the vacuum cleaner (as well as the blender, the food processor, and any other mechanical device in their home). The boy’s sensitive hearing still kept him most anxious about the vacuuming, and as his verbal skills increased, he would head to his room and admonish his mother, “Don’t start until my door is shut!” and call out “Is it over?” when the vacuum cleaner had stopped. By the time he was a teenager, the boy told his mother, “That vacuum is like shrieking banshees in my ear.” She thought it would always be that way, and sadly she wondered what other sounds in the world still tormented her son. He had gotten to a point where he could go to a movie theater if he wore ear plugs, but the vacuum cleaner still plagued him.

Then one day, after being in a series of situations involving loud noises and noting that her son was affected by them far less than he used to be, the mother decided to try something. She approached her son and mentioned that it seemed that his hearing wasn’t as sensitive as it used to be, and he said, matter-of-factly, “Well, I’ve just learned to deal with it.” She pointed out that he could now mow the lawn while wearing ear plugs, and she asked if he would be willing to try that with vacuuming.  “Okay,” he said in his typically flat voice.

The mother gave him a brief tutorial on the vacuum cleaner, and, armed with his trusty ear plugs, the boy began to vacuum his bedroom while the mother went to work on something in another room. Amazed that he agreed to do it in the first place, she figured that he would do a quick job and shut the vacuum cleaner off as soon as possible. So when four minutes had gone by and the vacuum cleaner was still running in his room, she went back to check on things. She discovered that her son had put an attachment on the vacuum nozzle and was methodically detailing the corners of his room. She stood there, marveling at this unexpected turn of events. And then, with the ear plugs still firmly planted in his ears, her son looked up at her and smiled. The shrieking banshees no longer consumed him.

After the mother picked herself up off the floor, she praised him for taking the initiative and doing the extra work in the corners. She asked him how it went for him – vacuuming! – and he said in his flat but beautiful voice, “It was fine.” And even though it was a small thing, inconsequential in the grand scheme of things, the mother crossed “vacuum” off her mental list of things that her son, now almost sixteen, would “never” do and reminded herself that anything is possible. Anything.

The Chewing Issue

When you’ve got a kid who chews things to bits (Lego, ice cubes, wood, hair, his own fingers) due to some extreme combination of sensory issues, OCD, and anxiety, you’re always on the lookout for ways to alleviate that. Medication helps, as does learning relaxation techniques. But sometimes, the bad habits stick around or the sensory issues remain. And even though he stopped pulling out his hair and eating it, the kid still needs to chew.

Enter Chewy Pencil Toppers from National Autism Resources.  These durable, flexible tubes fit over the ends of pencils (or thin pens) and provide deep pressure through the use of biting or chewing. I recently received a sample and enjoyed trying them out myself! I’m sure they will be very beneficial for Nigel, especially with the potentially increased anxiety due to moving and starting at a new school. Anything that would help relieve his poor, often bleeding fingers certainly has my endorsement!

Taking the Evening Off

You know how it is. When you have a child with special needs and you dare to venture out in public, you often get stared at, sometimes judged. You know what people are thinking because occasionally they say it out loud. “Somebody needs a spanking!” “Can’t you control your child?” “You shouldn’t have him out in public, disturbing others.” I’ve heard it all. And believe me, it got to a point where I just stayed home, other than the mad dash to the grocery store, when I needed something and there was no one to watch my boys, so I took them with me. And why bother with restaurants? My older son’s sensory issues were so extreme that he would writhe on the floor in agony, wailing “go” every few minutes. It was one of the only words he could say at age five.

Time passed, and we dared to venture out a little more. After years of intensive therapy, my son’s sensory issues had become more manageable. But only for a limited time, of course. After ten or fifteen minutes in a restaurant, he needed to crawl under the table for relief. This does not look good at any age, but it’s really frowned upon by age twelve. And although my son had eventually learned to talk, he still didn’t understand the social expectation of thanking the wait staff when they bring you something in a restaurant. I would always model the appropriate response, and at some point, my son started saying “thank you” when prompted. Almost every day, in various situations, I would need to prompt him. After a while, after the thousandth time, I thought it would always be that way.

Then one day not too long ago, at the age of fifteen, my son said his first unprompted thank you when someone had waited on him. I was happy, of course, but I figured it was an isolated incident. I figured that we’d go right back to the prompting routine that had been in place for so many years, that it was a crutch for him. You see, even when my parenting is not being openly criticized by others, I criticize it myself. You know how it is.

Soon after that day, we went to a restaurant. I sat in awe as my sons conversed. There was no wailing, no writhing on the floor. No crawling under the table. No going up to other tables and repeating a line from whatever movie had been watched earlier in the day. And when a plate of food was placed in front of my older son, he said Thank you. Completely unprompted. And I allowed myself to entertain the notion that maybe all the years of prompting had not been a crutch. It had been what he needed in order to learn what was socially acceptable, what was expected of him. It just took him a really long time to get it down.

And now, he’s got it down. Last week, we went out to dinner at a restaurant that we’d gone to periodically over the years, once my son had gotten to a point where he no longer wailed and writhed on the floor. In the past, he’d crawled under the table many times, he’d gotten up and walked all around, he’d had to go outside for sensory breaks. He’d never acknowledged the waiters. But this time was different. This time it was like autism took the evening off.  

I know that’s not how it is for my son. Even on the infrequent occasions when things seem effortless, when things flow seamlessly, he is hard at work – processing, filtering, anticipating, regulating. Autism is always with him. But that evening, at dinner, he was flawless. He placed his order like a pro, he conversed, he joked with the waiter, he thanked him – unprompted – three separate times (!), he politely and discreetly asked where the restroom was and returned to the table afterward without wandering. It was nothing short of amazing, and perfect for the occasion – celebrating the publication of my book. For the first time ever in a restaurant, we were able to stay for dessert, and I savored every moment.

But the real treat, the best moment of all, was when the waiter brought us the check at the end. “I just wanted to tell you how well-mannered your sons are,” he said to me. Of course, all parents love to hear that. They smile and say thank you; they’ve probably heard it before. But I never had. And my face probably looked strange to him as I said, “Thank you very much,” while trying not to cry. All those years and years of stares and judgment, writhing and wailing and crawling under tables are finally behind us. Not to mention the years of incessant prompting, wondering why I bothered. Now I have my answer.

And I don’t think that waiter will ever know how much his words meant to me.

Flying Solo, Part 2

Please wait, an agent will be with you shortly.

Your chat session has started . . .

Micki: Thank you for contacting Economy Air. My name is Micki. How may I assist you today?

Tanya: I have downloaded the unaccompanied minor form for my two children, ages 13 and 15. My question is if the meeting party needs to sign where it says “signature of Party Accepting Custody” when they actually pick up the children, or does it need to be signed by the meeting party beforehand? Thanks.

Micki: 13 and 15 year olds traveling together are not considered unaccompanied minors. The 15 year old is considered an adult.

Tanya: My 15-year-old has autism, and their father still needs to go directly to the gate to pick them up.

Micki: [no response]

Tanya: He’ll be fine on the plane, but we don’t want him going through the airport unaccompanied.

Micki: That is fine. We will document the itinerary so that it’s understood by the agents. All the father needs to do is show his identification at the ticket counter and they will issue him a gate pass to meet the flight.

Those who happened to catch my post a few days ago know what transpired with the December 25th travel plans, and why the flight had to be scheduled that day. But since we had no way of knowing that it would be canceled, the boys were prepped for their first solo flight (!). We practiced lifting up their luggage to put it in the overhead bins. We talked about being patient while waiting to de-plane and not making comments about how people should “just move.” We talked about what to do if for some reason their father wasn’t at the gate when they landed. We went over what topics are not okay to talk about with airport security. Special needs were noted with the airline agent in an online chat that could be printed out for verification. Not surprisingly, there were many preparations for this huge milestone.

And although they ended up not flying that day, we still planned to have them return to Oregon by plane.  I got up that morning and prayed for a fogless arrival time, so that the boys’ plane could land safely. Their father called to let me know as soon as they boarded in LA. He sounded so proud, describing how he watched the boys get on the plane, and how they waited patiently for an elderly woman in front of them.

When the time came, I drove to our little airport to pick them up. The sky looked good, but as I neared the terminal, my body started gasping involuntarily. It wasn’t a panic attack, which I’ve had in the past. No, it was just a mom, overcome with emotion. I couldn’t help it. Nigel was doing something I never thought he’d be able to do! He has come so far, and he never ceases to amaze me.

I parked the car and pulled myself together. I went to the counter to request a gate pass. They hemmed and hawed a bit at first (I wanted to say, So what if they’re teenagers? They are my children, autistic or not, and I have every right to meet them at the gate!), but all I had to do was drop the A-word, and then they were accommodating. The flight was only a few minutes late, and I waited anxiously at the gate.

I was afraid that I would start crying again with their arrival, but as soon as I saw them, my face broke into a huge grin! Aidan ran past me, looking unwell. “Mom, I’m sick. I’m going to the bathroom,” he said as he handed me his luggage and took off. “What’s wrong?” I called after him, but he hurried away. I hugged Nigel and asked him what was wrong with Aidan. He said he didn’t know, and we walked over to the side to wait for him. Nigel said that the flight was fine, and then he proceeded to tell me about how, at the movie theater the night before, he threw up twice during the 3-D showing of Avatar. “That 3-D was too good, I guess!” he said with a chuckle. “I’m sorry that happened, honey,” I said. He told me that all the 3-D aerial scenes made him dizzy and sick. I hadn’t even thought of that as a movie-related sensory issue. If it’s not one thing, it’s another!

Aidan returned then, explaining that he’d felt a little airsick when they started descending, and then the stuffiness of the cabin and having so many people around him while waiting to de-plane just got to him. “At least I didn’t throw up in the plane,” he said. Yes, at least. Oh, my poor SPD boys! I felt so bad that they had both been sick, especially when I’d hoped that they would enjoy the movie, and later, take pride in their autonomy on the flight. But my concern took a back seat to my overall relief and exhilaration. They did it! Their first solo flight! After many years of effort in dealing with their challenges, it’s so validating to just let them fly.

The More Things Change

Aidan, seated next to me in the booth of a Mexican restaurant, says, “I have a joke for you, Nigel.”

Nigel, seated across from us on the other side of the booth, asks, “What is it?”

“A plane crashes on the border of California and Mexico. Where do you bury the survivors?”

I have heard this one before. And when a visually-oriented person hears it, as opposed to reading it, that person, especially if he happens to be interested in disasters of all kinds, will not hear the word “survivors.” He will hear “plane” and “crashes” and “border of California and Mexico,” and he will hear “bury.” And he will matter-of-factly answer, “They should be buried in the country they are from.”

And Aidan smugly delivers the punch line: “You don’t bury survivors.”

If Nigel had read it somewhere, had seen it in print, he would have immediately caught the trick. But verbally, of course, it’s lost on him. He has to be reminded that the word “survivors” is part of the equation, and then he understands. He calmly takes it in stride, filing it away for future reference.

Meanwhile, what is not lost on me is the fact that all of this is taking place in a busy restaurant. Not too long ago, going to restaurants was highly problematic. Up until about seven years of age, Nigel’s sensory issues were so crippling that he would writhe on the floor, wailing in agony whenever I tried to take him into a restaurant. He couldn’t handle all the people and their respective sounds, the background music over the speaker system, the clanking of dishes, glasses, and silverware, crying babies, whirring fans, lights, and whatever else affected him. God forbid he should need to go to the bathroom with its echo-inducing walls, air hand driers, and loud toilets. God forbid the staff should decide to vacuum around the table right next to ours.

Yet, tonight at the Mexican restaurant, every single one of those things happened. Every one of those things – except Nigel writhing and wailing on the floor. That’s right – he was completely fine tonight. When he was around eight or nine years old, things seemed to get a little easier for him (except for the bathrooms and vacuum cleaners), and we could usually experience a successful fifteen minutes in a restaurant. After fifteen minutes or so, his sensory issues would reach a build-up point, and then he just couldn’t take any more. He’d have to crawl under our table (this, at age twelve, did not look okay to staff and other patrons, but hey! That’s what the boy needed to do). At least the writhing and wailing had stopped by that age.

Now, however, blessed Now, he can eat a full meal in a restaurant without any discomfort or distress. Unfortunately, my ASD-parent PTSD is always affecting me, and I cringe at every single sound. The music, the babies, the clanking. When they bring out that damned vacuum cleaner right next to our table (Gah! Why must they do that? Why?! We’re eating, for God’s sake!), I about have a heart attack. But Nigel is completely unfazed. No ear plugs. No covering his ears. No diving under the table. He calmly munches on chips and salsa while he talks with his brother about G-force and physics. The old adage about things changing? In our case, they don’t stay the same. And I, for one, am relieved.

Aidan continues with his next joke. “Imagine you’re in a box with a pig and a stick. How do you get out of the box?”

Nigel briefly contemplates, then answers, “I would hit the pig with the stick until he gets mad enough to break down a side of the box, then I could get out.”

Aidan says, “Stop imagining. If you’re imagining that you’re in a box, just stop imagining and then you won’t be in it anymore.”

Nigel smiles and files that one away too.

The Funk

Silver Falls State Park, OR

When I was in college, my roommates and I hosted a P-Funk party that people still talk about. We dressed up and wore wigs. We played records (yes, records) and really got down. But that’s not the kind of funk I’m into now. A few months ago, my two teen boys invited some friends over (more teen boys) for a sleepover, and the next morning, as they slept and I walked into the game room to survey the damage (almost as wild as my P-Funk party), I was hit with a wall of funk. Teenage-boy funk. Sweat, dirty socks, and (um, how to put this delicately?) expelled-air kind of funk.

But that’s not the kind of funk I’m in now. You know the kind, I’m sure – things are going mostly okay, you’re working, taking care of the kids and the household, but something doesn’t feel right. And in spite of all that’s good in your life, in spite of counting your blessings, it’s still hard. Right – nobody said life was supposed to be easy. But is it supposed to be hard?

No, I tell myself. I’m just in a funk. I’m at a crossroads with my finished-but-still-unpublished book, unfulfilled with my day job, feeling like I’m between treading water and sometimes barely keeping my head above it. So when Nigel, who turns 15 next week, told me last night that his case manager at school said to ask me if he’s going to be getting his driver’s permit (what?!), I felt like I’d been hit by a wall of water.

I didn’t know this was coming, although really, I did. I just didn’t know it would be this week. But what shocks me more is that I was just talking about this with my good friend Carrie less than a week ago. (Got Carrie? If not, head on over there immediately. You’ll be glad you did.) I was telling her how I didn’t know how to tell my son that he’s not ready to drive yet, in spite of how much he wants to. I told her how I’ve been putting it off, not sure how to approach it, foolishly thinking I still had some time. And then, something amazing happened, as it usually does when we’re with someone who listens and understands. Out of my mouth tumbled, “Maybe he just needs to hear it from me” or something along those lines. And I knew that I had to have the talk with him soon. I just didn’t get it together quick enough. So, I copped out. Last night, as I had three different dinners cooking at once while he stood there expectantly, I said, “Maybe in a few months.” I just couldn’t do it right then.

Because last night my other son needed me more. Last night Aidan was still recuperating from a vaccine reaction. Yes, I said it. I’m going there. He had his 13-year physical two days ago (a couple months late, but oh well), and the nurse spouted off at least four different vaccinations or boosters that he “needed.” We decided to go with one – the meningitis. It was the one that I felt strongest about, so we took it. Then I dropped him back off at school and I went back to work. In less than an hour, Aidan told me later, his arm was numb, and he had a headache and abdominal pains. My poor sweet boy didn’t want to disturb me at work, so he suffered through it at school and told me when he got home. He slept badly that night, still experiencing the same problems. He stayed home from school the next day, and by that evening (last night), he was feeling better (although his arm still felt strange).

I went in Aidan’s room to talk to him before he went to sleep, as I do every night. I’d had an epiphany, and I wanted to share it with him. My younger son has sensory processing disorder – gustatory, olfactory, tactile, proprioceptive, and vestibular (worse than Nigel in all of these areas). And when Aidan was a baby, he cried almost constantly – but it didn’t start until he was two months old. That was when he received his first round of what turned out to be no less than 16 vaccinations by the age of 18 months. (By comparison, I’d received 6 vaccinations by the time I was 18 months. I guess I should consider myself lucky to be alive, as undervaccinated as I was.)  Aidan knows that he was a crier. He’s heard the war stories. But, as I told him last night, now we know why. I think that it took months for his little body to assimilate the vaccines, and by the time he got through one round, it was time for another, and then another. His body was flooded, overwhelmed. And I believe that experience contributed to his sensory processing disorder.

Maybe I’m reaching. Maybe it’s my funk. I don’t think vaccines are bad. But once I made that connection with Aidan’s babyhood, I felt like I’d solved a 13-year mystery. And Aidan agreed with me; both of us achieved some closure. As I left his room, I blew him kisses from the doorway, as I do every night. Often he blows them back to me. Last night, I shut the door and stood in the hallway a moment. I heard him continue to blow kisses to me even after the door was shut.

I can only hope that when I approach Nigel about the driving issue that I can word it in such a way that he can understand.  I don’t want him to see it as a punishment, as a wall of water crashing down on him. I hope that what I discussed with Carrie turns out to be right – that he just needs me to tell him. Maybe once I talk with him and get it all out on the table, I’ll feel better. Free, even. Free of the funk.  

My Undiagnosed PTSD

I have read and heard it said that we all have sensory issues to some degree. Whether you cut the tags out of your clothing, get a headache from fluorescent lights, cringe at the sound of a drill, or even still get carsick, you’re exhibiting a mild symptom of SPD.

But sometimes it’s not so mild. Sometimes your senses of taste, smell, and tactile processing are so affected that you can only eat a few foods. Sometimes your hearing is so sensitive that it’s difficult for you to be in a classroom and filter everyone else’s sounds – chairs scraping, pencils writing, kids talking, teachers raising their voices, bells ringing. And forget trying to function if the fire alarm goes off. Forget being able to filter a blender, drill, leaf blower, or air hand drier in a restroom. It’s enough to make you scream. And quite often, because you can’t talk and even if you knew how to cover your ears, it wouldn’t be enough, you scream. You scream and you run. And if you can’t run, you writhe on the floor, screaming in agony.

And if you’re a parent of a child who does that, you become ultra-aware of your child’s triggers, or possible triggers. This is just one of the many reasons why recent studies (sorry -can’t seem to find the link right now) have indicated that some parents of children with autism have PTSD, from years of being hyper-vigilant, stressed, and exhausted, among other reasons. You try to second-guess every situation. You instantly notice the echo-effect or noise level of every environment and hope that your child is okay with it. You cringe when you hear a loud mechanical noise. You still check for air hand driers every time you enter a restroom, even if your child is not with you.

In many cases, as the child gets older, they learn how to filter the sounds that used to be so agonizing to them. Sometimes, they get to a point where they only have to briefly plug their ears if a sound bothers them, instead of screaming and bolting in a panic. There is a huge reprieve as the parents feel safe to go out in public again.

But some parents – and I am one of them – are still affected by the experience of having a child who screamed and bolted and writhed on the floor. Even though my son is almost fifteen and it’s been several years since he reacted violently to a sensory issue, and even though I consciously know that he is fine now and would probably not have those reactions again, I still have these subconscious fears. Or maybe they’re psychosomatic sensory issues. When we are in public and a mechanical device or appliance goes off, it’s a trigger for me. Every sound is magnified. I almost break into a cold sweat. My adrenaline starts pumping and my pulse quickens. I become hyper-alert; I instantly look at my son. Often times, the sound doesn’t appear to have fazed him. Or, if he noticed it, he merely covered his ears. Sometimes he might make a comment like “That was pretty loud.” But that’s it. He no longer screams or bolts, and he hasn’t for a long time.  

On some level, it’s like when I was in college and waited tables for my job. For years afterward, whenever I went out to eat at a restaurant, I couldn’t relax. I was constantly aware of the wait staff, how many tables they had, how they hurried. I would feel nervous when I would see food sitting in the pass-through window, waiting to be brought out to the tables, like I should get up and do it. If someone dropped or broke something, my adrenaline would race through me. For years, even after I no longer waited tables, I didn’t go out to eat much because I just couldn’t enjoy myself.

It’s been about sixteen years since I waited tables. And about a year ago, I was out a restaurant, and I noticed that I was relaxed. I wasn’t watching the wait staff. I wasn’t aware of the food coming out. I didn’t think about timing. I didn’t flinch when somebody dropped something. I realized that I was enjoying myself. So. Fifteen years. Fifteen years to get over the “trauma” of waiting tables for four years.

I don’t remember the last time that my son reacted violently to a sensory issue. I remember many of the individual instances, but not all. I’m sure that the times I’ve forgotten are those that I’ve mentally blocked, as a defense mechanism. But I can guess that it’s been about five or six years since we’ve dealt with a sensory meltdown. Since then, we’ve had meltdowns for other reasons, of course, but not sensory-related. So if my track record holds, I’ll need another nine or ten years to get over the experience of having a screaming/bolting/writhing child.

And while I know that this is nothing compared to the PTSD inflicted on many of those who serve our country, it is difficult for me. Time does heal. I just wish there was something I could do in the meantime.  

Project Linus

When I was a child, I had a security blanket. It was hand-crocheted by my aunt when I was a baby, and I had it (or remnants of it) up until I was 19. It was bamboo green with large, loopy stitches that I could squeeze my fingers into. I happily scrunched it and clutched it every night of my life until there were literally just a few twisted threads left of it.

I figured that my own children would also have their own security blankets, but they, doing their own thing from the beginning, preferred stuffed animals as their security items. I can certainly understand the allure of stuffed animals, having had many myself while growing up. I’m sure many others have as well – teddy bears or favorite dolls. Tigger, in Nigel’s case.

But there’s something so universally comforting about a blanket. Project Linus began in 1995 after Karen Loucks was inspired to make blankets for her local children’s cancer center. It has since expanded greatly, with 405 chapters nationwide. Volunteers give handmade blankets to various facilities and organizations for children who are seriously ill, traumatized, or otherwise in need.

And I’m very excited to say that the “otherwise in need” part now includes weighted blankets for children with Sensory Processing Disorder, including those on the autism spectrum.  Many local chapters are now featuring special handmade blankets with Velcro pockets, which have folded remnants of fabric placed inside to provide the weight. The fabric remnants are removable so that you can easily wash the blanket. You can also add more fabric remnants into the Velcro pockets if your child needs more weight in the blanket. These handmade weighted blankets are amazing works of love.

Click here to find a Project Linus chapter near you. If your nearest chapter is not able to offer weighted blankets, my local chapter does, and they have offered to ship a donated blanket anywhere it needs to go! They even generously offered to donate weighted blankets to AutismCare Nepal, where I helped with the awareness workshop this past July. Thank you, Project Linus!

Long As I Can See the Light

We have a well-loved concert venue here in southern Oregon called Britt Festivals. I’ve enjoyed seeing many shows there over the twenty years that I’ve lived in this area.  It’s an outdoor venue where patrons can bring their own picnic dinner, including beer and wine, and listen to great music on a hill under the stars. I try to go once every summer, and every time I go, I wish my boys could be with me. For most of the summer shows, they’re in LA with their dad, but that, of course, is not the only issue. How do you take a sound-sensitive autistic teen to a concert? Would ear plugs be enough? Could he handle the sensory bombardment for over two hours? Would he even enjoy himself?

Inspired by reading about C going to a nightclub (!) last year, I decided that I wanted to take Nigel to a concert at Britt. I figured that we had a better chance of success with this venue since it is outdoors, and the sound level would not be contained within walls. He could also lie down on a blanket on the grass, read books, and eat food from home to increase his comfort level. And then when I heard that one of his favorite bands, CCR, was coming to town the week after he and Aidan would return from LA, I knew that I had a recipe for success. I bought three tickets.

But I also knew that in order for it to be successful, I needed to prepare him. I called him while he was still in LA and told him about the upcoming concert we’d be attending, assuring him that we’d bring ear plugs. He was excited about seeing his first concert and that it would be CCR! He was mildly disappointed that John Fogarty would not be present (the band is now called Creedence Clearwater Revisited), but he was still very motivated to go. A few days before the concert, I showed him the website of the venue, with a map showing the grounds and the lawn area where we would be sitting. I explained to him that even though we had tickets, we still needed to wait in line for at least an hour to get good lawn seats, and that once we got our seats, we would need to wait an hour and a half before the concert started. Then I had to explain the concept of an “opening band” and field questions about why there would be one before CCR took the stage.

So we packed lots of food, beverages, books, National Geographics, and our magnetic portable chess game. Rain was forecasted for that one day of the week (damn!), so I packed umbrellas and jackets. And of course – the ear plugs. It rained just a little while we were waiting for our seats, and Nigel took it in stride under an umbrella. Finally we went inside, found a good spot, and spread out our blanket. We read for a while and relaxed, and when the music started, Nigel and I were in the middle of a chess game. His eyes grew huge, and he said, “Quick, Mom! The ear plugs!” He put them in and adjusted to the sound level. I was relieved.

But I was happiest when I saw how much Nigel enjoyed the concert. The vocalist, John Tristao, met with Nigel’s approval by doing an amazing job of recreating Fogarty’s distinctive voice. Nigel kept leaning over to me, making little comments like “They are using ‘60s graphics on the backdrop,” “I feel like I’m in the ‘70s,” and “I bet the aliens can see this concert from outer space.” I loved when they played “Hey Tonight,” and Nigel looked up and said to me, “The stars are perfect with this.” I had been worried that he would merely tolerate the concert, or that he wouldn’t engage. But he got up and danced, waved his arms in the air, cheered quietly, and even sang along. Seeing him mouth the words “I wanna know . . . have you ever seen the rain . . . comin’ down on a sunny day?” brought tears to my eyes. When the concert was over, I asked him, “What did you think of that?” and he said, “That was rockin’ awesome!!” with the most enthusiasm I’ve ever heard.

In the middle of their set, the band did some introductions, and the drummer, Doug Clifford, who was in the band at the beginning, told the story of how they met in seventh grade and dreamed of being in a rock band. He told of their success as musicians, eventually having two number one albums on the charts. And at the end of his short, inspirational talk, he urged the audience, “Hold onto your dream.” I really needed to hear that. I think we all do.

Getting the Blood Flowing

Nigel and Aidan come from a long line of national park enthusiasts. When I was a child, my family combed the western states, visiting nearly every national park from Yosemite to Mt. Rushmore (technically, that’s a national monument, but you get the idea). We went to the Grand Canyon three times. My mother has been a ranger at Lassen in California and is currently a ranger at Crater Lake National Park here in Oregon. For many years she was a tour guide in Yellowstone. I have taken Nigel and Aidan to all of those parks and several others.

And so, my sons were looking forward to our recent trip to the Grand Canyon (their first) as much as I was. Along the way, we stopped at Hoover Dam, per Nigel’s request. He insisted on walking half-way across the dam so that he could stand on the border of Nevada and Arizona, as you will see in the photo below. It was hideously hot, well into triple digits. We slid into our (mercifully air conditioned) rental car and connected with I-40 all the way to Flagstaff, where the boys were only too happy to leap into the hotel pool. We rose early the next morning to head to the busiest national park at the busiest time of year.

Having been to the GC before, I knew that the best way to experience it is to get down in it, even just a little. There are two trails along the South Rim that you can take. One, Bright Angel Trail, is more like a thoroughfare. You’ve got tons of people like me who want to hike into the canyon, and you’ve got the mule trains going forth and back. Not ideal conditions for two boys with sensory issues. So I took them on the Kaibab Trail, which is far less crowded and – according to a website that turned out to be wrong -not used by the mule trains.

So we get to the trailhead, strap on our hydration pack, and head out, or down, I should say. Nothing like a good hike to get the blood flowing! We have barely begun, are only fifty feet from the trailhead, and Aidan, with his vestibular hypersensitivity, stops short. “I don’t think I can do this, Mom,” he tells me. “It’s okay, honey,” I assure him. “We’re not going to be near any cliffs.” I put my arm around him and try to gently lead him forward. He does not budge. “I can’t do it, Mom!” We are five feet below the rim, and he is having an attack of acrophobia. This I had not planned for. Nigel is barreling on ahead, and I call out to him to slow down for Aidan. “Can’t I just wait at the trailhead for you?” Aidan asks. I tell him I don’t want him waiting alone for an hour and a half. Then I put him on the inside of the trail, and I explain to him that we will walk together slowly and that I will switch places with him whenever the trail switches direction. He reluctantly complies.

At every switchback, Aidan complains a bit, but he walks with me, staring down his fear. I tell him how well he’s doing and how proud I am of him as we catch up to Nigel. We are five minutes into the Grand Canyon, and Nigel has the mother of all bloody noses. As he usually does whenever he gets a bloody nose, he has smeared it all over his face. We have been on countless family hikes, Nigel has been hiking with Scouts for almost five years, and he’s never had a bloody nose on a hike. Of course now I don’t have any tissues. Of course. One small stroke of luck is that Nigel is wearing a navy blue shirt, so the blood will not glare as much, and I tell him to use his shirt to wipe his face. The blood is pouring out of his nose, it’s a proverbial faucet, so I sit him down and instruct him to pinch the sides of it. Aidan sits down next to him. I try to wipe more blood with the blue shirt.

At this point, people -other hikers – have started stopping and asking if Nigel’s okay. I mean, it looks like a rock landed on his face. I tell them he’s fine, it’s just a bloody nose. Two different parties of people stop to offer us tissues, and I couldn’t thank them enough. Who goes on a hike and doesn’t bring tissues?! Good grief, you’d think I’d never been on a hike before. So we lost about a half an hour with that. Nigel would get antsy from sitting, say, “I think the bleeding has stopped,” and we would start walking. Seconds later he’d be bleeding again, so we’d stop and sit and blot and pinch. Then we’d get up and keep walking and sit down again when he needed to. Finally the bleeding stopped for good.

And Aidan, acrophobic Aidan, continued on alone up front. I guess he realized that the trail was actually pretty safe, or maybe he just got used to it. I was shocked but knew better than to make a big deal out of it. We met up with him at Oo-Ah Point (yes, it’s called that because of the view), which he quickly surveyed, unimpressed, and then turned around to head back up. I snapped a few photos and headed back with Nigel, pacing ourselves. Aidan must have felt much more confident going up, and he was quickly out of sight.

Aidan at Oo-Ah Point

Nigel at Oo-Ah Point, with his blood-soaked shirt and tissue-stuffed nostril

About half-way up, we ran into a mule train coming down, maybe eight of them. They were in training, with blocks of wood on their backs. We stepped to the side as they passed, and I hoped that Aidan had managed okay. Soon, we reached the top and found him waiting at the trailhead. I couldn’t wait to praise him again for being so brave in the Canyon, but before I could, he said, “I thought you said there would be no mules on this trail!” I told him that I had been misinformed, and then we headed straight to the lodge for ice cream. Because really, that’s our favorite part about national parks. Bring on the heat, acrophobia, bloody noses, and mule trains. Just don’t forget the ice cream.

After ice cream, Nigel meets a new friend

at Wupatki Indian Ruins the next day

a centuries-old ball court

Boys and sticks in the desert