Tag 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.

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.

Just Another Teenager Mowing the Lawn

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Just another teenager mowing the lawn? At first glance, perhaps. But a closer look reveals a secret weapon or two:

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Anyone who knows Nigel knows that mowing the lawn is not an easy thing for him to accomplish. Here’s what’s working against him:

1) Sensory issues, the obvious offender. Notice the ear plugs to help muffle the sound of the mower and the sunglasses to fend off the glare of the sun.

2) Nigel’s fear of bees and other flying insects. Notice the long-sleeved shirt and jeans even on the warm day.

3) Nigel’s inherent lack of understanding about household responsibility and his lack of desire to contribute. Notice the hurried, haphazard zigzagging direction that he’s taking.

What motivated him to forge ahead in spite of these obstacles? Seeing other teenagers in the neighborhood mowing their lawns. Nigel’s desire to “be like everybody else” was motivating enough for him to brave the elements and take some responsibility around the house. Of course, I have to realize that this may be just a one-time engagement. After about ten minutes, a wasp came “dangerously” near him, causing us to renegotiate what constitutes a mowed lawn. But hey – under the circumstances, I’m pretty impressed that he even tried. He told me that he’d try again on a cloudy day, because “bees don’t swarm so much on cloudy days.” I’ll take his word for it. Happy Spring, everyone!

If I Blogged 5 Years Ago

Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.

If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.

Five years ago, I would have blogged about emerging Nigelisms like this:

The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.

Younger brother, about age 5: Mom, what is this fred?

Mother: It’s a bun.

Younger brother: There are bun freds?

Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.

Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same – he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English – like it was a foreign language.

If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.

Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.

Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years – bullying, homeschooling, behavioral problems, medication, etc. – but the fact is that both of my boys continue to improve. Hope abounds.

Comfort Zones

I’ve never been called a social butterfly. Not even close. I am a happy introvert. My Facebook “About Me” section says:  I have two sons, one autistic, one not. Both are more social than I am. So I started blogging.

But long before I started blogging, I noticed something happening that I wasn’t too comfortable with. Nigel’s diagnosis threw me into frequent meetings with various therapists, teachers, doctors, and other people. Then Aidan’s special needs became apparent, and I had to deal with even more therapists, more people. As my sons learned to talk, I noticed that they were not introverts. One got interested in Scouting (actually both did, at first), and the other one went to a lot of friends’ houses. I met the friends’ parents. I met the Scouting parents. Some of them even became my friends.  As the years went by, I met more teachers and therapists and other parents. The fact is that both of my kids, especially my autistic one, have gotten me out of my comfort zone. And I discovered wonderful people – and a side of myself – that I might never have known.

Even so, when I have to go to a meeting or call someone I don’t know, I still step outside my comfort zone on a weekly basis. But people with autism, whether introverted or extroverted, have to get outside of their comfort zones every day. Nigel, with his fear of bees and other flying insects, gets outside of his comfort zone every time he steps outside. He gets outside of his comfort zone every time he enters a public restroom and wonders if there’s an air hand dryer on the wall, and if someone will use it while he’s in there. He is outside of his comfort zone whenever a baby begins to cry or an alarm goes off or a light is too bright. How many times a day does he step outside of his comfort zone?

I attended a dinner party tonight, and I only knew one person there, someone I hadn’t seen for almost four years. I was definitely outside of my comfort zone. It’s not that I’m shy, it’s just that it takes a lot of energy for me to pull that off, to push myself to be social. But I’ve been doing a lot more of that in recent years, and you know what? I laughed and broke bread with these lovely people, and I talked about autism and homeschooling and my job and places I’ve traveled, and I really enjoyed myself. In fact, at some point during the evening it dawned on me that I couldn’t be out of my comfort zone because, well, I was comfortable. I really was.

It’s hard to get out of our comfort zones, whether we’re autistic or just introverted (or in some cases, both). But I think if we do it enough times, our comfort zones evolve. Nigel is now comfortable in grocery stores and restaurants, places that used to cause him such agony. He likes these places and asks to go to them. The last time we went to a movie theater, he didn’t even need to use ear plugs. Some comfort zones may always be difficult to step out of, regardless of how much we try. But others, with time and patient attempts, can change. It’s good to stretch ourselves, whether we’re conscious of it or not. We stretch a little bit, and our spirits are encouraged to keep going, keep stretching. The rewards are too great to miss out on.

Sensory News

Sometimes it feels like I’m playing musical chairs with my sons’ sensory issues. I never know which issue is not going to be accommodated. When the boys were younger, it was like playing musical chairs with ten people and three chairs. Hence, I did not leave the house much.

As the years have gone by, both of my sons have learned to filter their sensory input, and most of the issues are no longer as extreme for them. Nigel can go into grocery stores, public restrooms, and restaurants now. Aidan rarely throws up in the car and no longer cries 80% of his waking life. Aidan’s oral defensiveness and tactile sensitivity still affect him, as does Nigel’s sensitive hearing. And so I still tend to write a bit about sensory issues, especially if I’m describing how far they’ve come.

Since both of my boys have tactile sensitivity, I felt it was quite fitting to be interviewed recently by Soft Clothing. As the mother of two sons who hate socks and wear certain clothes for days on end because they’re the only clothes that “feel comfortable,” I look forward to trying out their line of seamless socks and tagless shirts, coming later this year. And if you’re interested, click here to check out my interview/blog profile on their site.

As for my game of sensory issues musical chairs, we seem to have a new player to add to the mix: light. Nigel’s latest addition to his bedtime routine involves putting on a pair of sunglasses and hiding under his covers before I turn off his bedroom light. He says that the sunglasses “speed up the darkness level in the eyes,” which I assume refers to his adjustment from light to dark, just as his eyes need to adjust in the morning from dark to light. Of course, I think most of us fall into the latter category. But the adjusting from light to dark is a bit different. Perhaps it’s a transitional thing, and transitions of any kind have always been hard for him. Either that or he’s been listening to that old “Sunglasses at Night” song. Lucky me!

Nigel Vs. Grocery Store

Nigel recently accompanied me to a large, busy grocery store, a smorgasbord of sensory issue hell. In recent years, I haven’t thought about it much – we just go and do our thing. We come home, Nigel helps bring in the bags from the car, I unpack. Seeing us now, one would never guess that, years ago, going to the grocery store with my son was not such an easy task. In fact, it was a nightmare.

He was about a month old when I first took him to the grocery store with me. “Wow,” I thought as he slept on my chest. “He’s loving this.” Within eighteen months, that was not the case. The baby who slept on my chest became the toddler who screamed and writhed on the floor. After a few of those incidents, I decided to leave him home with his dad when I went grocery shopping. Of course, that was not always possible. Once I had to run out for a few essentials and had Aidan on my hip and Nigel pulling on my arm. Nigel was about three years old. The sounds and the lights tortured him. I quickly grabbed the few things I needed and went up to the check stand, thankful that there was only one person ahead of us. Suddenly, someone in the customer service booth right next to us turned on an electric coffee grinder. Nigel began shrieking and sobbing and trying to bolt. It was horrible. Of course, Aidan joined in. Somehow I managed to keep Nigel from running away. Shaking, with both kids still crying, I paid for our items, and we emotionally limped back to the car.

I did not take him in any more stores for several years after that. His dad and I were divorced, but for a while he still lived in our area, and he would have the boys two nights a week, so I did grocery shopping then. When Nigel was seven, his dad moved 700 miles away, but fortunately I had a boyfriend then who would stay with the boys while I ran my errands. That lasted until five years ago, when Nigel was nine. At that point, he could actually sit for a while in a restaurant, so I figured I could try taking him to the store again. I had to, because there was no one to stay home with him.

I was nervous, remembering all the screaming and writhing on the floor. And I was nervous because I didn’t know what my options were if it was still going to happen. We prepared using a homemade social story about going to the grocery store. I made rules, such as “hold onto the cart and stay with Mom.” And I promised rewards. If you are quiet in the store and stay with Mom, you can pick out a treat. And you know what? The planets aligned and Nigel did okay. He covered his ears a lot, but at least he knew to do that. It took him a few years to learn how.

About a year ago I decided that if I put on a movie for him that I could leave Nigel and Aidan home alone for an hour while I ran errands. My cell number was posted by the phone, and we practiced them calling me or a neighbor if anything happened. And I got used to them not going to grocery stores with me most of the time.

Last week, Nigel came with me because he had a gift card to use at a different store that was nearby. First we went to the grocery store. As Nigel calmly walked beside me through the entrance, I was suddenly thrown back to the days of sensory issue hell. It struck me how vastly different it is for him now. I have read about autistic adults who have vivid memories of their childhood and how agonizing their sensory issues were, and I wondered if Nigel remembered those old grocery store experiences. I described for him how he had been, reminded him of the time with the coffee grinder, and gently asked him if he remembered any of that.

“No,” he said. “I don’t remember.” He even sounded a little surprised.

Part of me wonders if it’s a case of him subconsciously blocking those memories because they were so traumatic, which is something that members of our family are known to do. Or maybe he just cannot access memories from before he was verbal. I know that I can’t remember anything before I started talking. In a way, I wish Nigel could remember his early years because I would love to hear his perspective on them now. That would be simply amazing. But it’s probably good that he can’t remember those painful times, for his sake. It’s enough that I remember them and can feel so fortunate that somehow he learned to filter the bombardment of sensory input, and now he can participate in so much more of our life. Even if it’s just a trip to the grocery store.

Extroverted Autism

By nature, or by definition, most autistic people tend to be introverts. It just goes with the territory. But what happens when that is not the case? Is it even possible that a person can be autistic but also be extroverted? How? And wouldn’t that be the ultimate cruel irony? Someone who desperately wants to be social having a developmental issue that makes the very thing he wants be nearly insurmountable to achieve.

I truly believe that Nigel has struggled with this since toddlerhood, possibly even infancy. Long before he was verbal he would try, always unsuccessfully, to interact with his peers. He couldn’t talk, so he went up to them and laughed, only to be misinterpreted with disastrous results. He would try to interact with adults by going up to them and saying their license plate number. He wanted so badly to connect with people, but they were people in a world from which he so desperately needed relief. He couldn’t go into public places because he did not know how to filter all the sounds that bombarded him and caused him such agony. His sensory issues were so extreme that they – and his social issues – prevented him from being true to his social nature and his desire to be a social person.

So, Nigel evolved. He had to if he wanted to interact with people. Various therapies had a lot to do with his success, but I firmly believe that his drive to be social in the first place is what motivated him to keep trying to connect and caused him to respond to the therapy as well as he did. He somehow, over several years’ time, learned to filter out the sounds that prevented him from going into stores, restaurants, public restrooms, etc. He stretched his cognitive skills to not only repeat lines from videos he’d seen, but then he used certain lines and fit them within the context of a situation in order to express himself verbally. He wanted to communicate. It just took him several years to learn how.

It is truly remarkable what he has achieved. I have a friend with adult ADHD, and he has said that on some level he can identify with Nigel because of his own experience with learning to regulate certain aspects of his behavior. It took a lot of time, patience, awareness, and hard work, but the rewards have been well worth it.

I am an introvert. Had I been autistic, I probably would not have talked. I don’t think I would have cared. I enjoy being in my own head so much as it is that, were I autistic, I would most likely love to stay there. I certainly don’t mean to simplify the complexities of autism and the reasons why some autistic individuals learn to talk and some don’t. Nor do I mean to propose that some autistic people just choose not to talk because they are introverts.  But I can’t help but think that the way we are socially wired – introvert or extrovert – has to affect autistic individuals as well. I don’t think that autism would cancel out a person’s natural inclination to be social, if that’s in his or her personality. I see it every day with my son. He just has to try a lot harder than most people.

Music

There has been so much research done on music as autism therapy that I couldn’t possibly address the multitude of positive effects from it in one post. What I will do here is discuss the effects that I have seen with Nigel, including increased verbal skills, better sensory integration, and calming influences.

According to the Autism Research Institute, “Autistic children have also made enormous strides in eliminating their monotonic speech by singing songs composed to match the rhythm, stress, flow and inflection of the sentence followed by a gradual fading of the musical cues.” In his early years, Nigel watched a ton of Disney videos from which he learned to use echolalia as a means to communicate. These Disney videos also had songs that he would memorize that taught him rhythm and voice inflection, and from them he gradually gained the verbal skill of using his own words.

As he got older, Nigel began to pay more attention to the music I listen to, which is a mix of classic rock, alternative, techno/dance, world, celtic, and more. I noticed that the categories that feature harder, faster beats (some rock and techno) seemed to help with his sensory integration. He learned how to filter sounds that previously had caused him to go into sensory overload, like air hand driers in public restrooms and other loud, mechanical sounds. And now, he likes the music for its own sake; he rotates his favorite CDs on his own stereo (mostly movie soundtracks like Twister, Back to the Future, and Cars) and sings along.

When he wants to unwind and relax, he turns to some more of my music. I am happily employed by a company called New Earth Records, a spiritually conscious music label specializing in New Age, world, trance, healing music, and Osho meditations. Nigel enjoys the beat and different instruments (sitar and sarangi) of James Asher’s Tigers of the Raj, the relaxing trance rhythms of Cybertribe’s Immortality (Nigel says: “It relaxes away the stress of the day”), and the beautiful melody of Lisa Lynne’s harp on Love & Peace. When I put on Deuter’s Sun Spirit, Nigel commented how much he liked the cover (Van Gogh’s “Olive Trees”) and said that the music made him feel “like you’re in the Renaissance.” Another title of Deuter’s that I play is Earth Blue, which makes Nigel say, “I feel like I want to sleep.” For someone with occasional insomnia, that’s invaluable, as are all the benefits of listening to music.

I highly recommend playing music for an autistic child (and every child), not only as an effective therapeutic device, but also for the soothing value of it. Music adds to the quality of one’s environment and life in so many ways.