Category Archives: Sensory Issues

The Baby Issue

Like many autistic people, Nigel’s always had a hard time being around babies. He just can’t filter the crying. It’s one of the only sounds that he still hasn’t been able to filter very well because of the unpredictable nature of it. That, and he just doesn’t understand why they can’t stop. It’s hard for him to be patient or understanding because his ears are killing him. “Can’t that baby stop crying?” he’ll say when he hears one in a store. Telling him that the baby can’t help it – or that he cried when he was a baby too – doesn’t help at all. It’s not about trying to develop understanding and patience. It’s about needing relief for his sensitive hearing.

And it started early on, too. Nigel was not yet two when Aidan was born, and Aidan had an even harder time with SPD than Nigel did. Poor Aidan spent about 80% of his waking life crying, and poor Nigel literally climbed the walls while Aidan did it. In fact, one of Nigel’s first words – “cying” – was said to describe his brother. Cying = crying without the “r”. He couldn’t say Mom or Dad, but he could say cying. “Yes, Aidan is crying,” I would say, and Nigel would run out of the room.

Nigel has no memory of those days, but he still can’t handle babies crying. He knows they can’t help it, he now understands that, but he wishes they didn’t have to do it. I told him that I’m sure their parents feel the same way!

But, despite how he feels about babies, Nigel is excited to have a baby cousin. He went to see Nolan shortly after he was born, and Nigel was a little nervous, but quite receptive. Now, Nolan is two months old, and we were very happy to have him (and his mom!) come to Nigel’s graduation party this week.  Nolan was very willing to accommodate his cousin and only cried while his diaper was being changed. After Nolan was fed and happy, Nigel came over, smiled at him, and said, “Hi, Nolan. Hey, little guy.” Nolan broke into a sweet grin and Nigel exclaimed, “He likes me!” Then he said, “But I’m pretty sure he’s not ready for some Godzilla action.”

Just yawning, fortunately . . . 

Just Another Teenager Mowing the Lawn

100_1741

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

100_1742

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!

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!

Couch Surfing

It’s been a long time since I’ve purchased any new furniture. But our old couch, a fourth-generation hand-me-down, was down to threads. The middle sagged like my, um – well, it just sagged. And even the slipcover that I’d had on it for the past five years was worn and faded. It was time for a new couch.

So, after much searching in stores and trying to budget for a brand new one, I found on Craig’s List a beautiful, gently used leather sectional that I love. It’s the same shape as our old one, just a few inches longer on each side. And the price couldn’t be beat. I was so excited about it!

Then I remembered – I had better prepare Nigel. Even little transitions like a new piece of furniture are sometimes difficult for him to assimilate. I announced that we would be getting a new couch soon and showed him the photos of it that had been posted on Craig’s List. I pointed out that it was similar in size and shape to the old couch, just different material. I mentioned that I wouldn’t constantly be nagging about the slipcover getting messed up because we wouldn’t need a slipcover. Nigel, not caring in the least about the slipcover, started in with the questioning. Why do we need a new couch? Why can’t we just keep the old one in the game room? Why do we have to get rid of it?

I couldn’t expect him to understand that because the old couch had belonged to an ex-boyfriend, I really didn’t want to keep it any longer. So I tried to come up with other compelling reasons, but Nigel held his ground. He didn’t want to get rid of the old couch because he had fond memories of watching movies with the ex-boyfriend. I knew then that the only way out of this conundrum would be gradual. He needed time – time to bond with the new couch and time to let go of the old one.

Since Nigel is a kinesthetic learner, I figured that one way of helping him to process the new couch would be to have him help with moving it. I brought him with me to go pick it up from the seller’s house, and he enjoyed helping to carry it out and load it on the truck. When we got to our house, he helped to unload it and bring it in. And then he would have nothing to do with it.

I had pushed the old couch to the back of the room, and that is the one that he sat on. “I have to say goodbye to it,” he told me. And I knew that he would need time to do that, so I scheduled the pick-up for the old couch the following week.  He sat on it for about an hour, and he insisted on eating his dinner while seated on it. “I have a lot of memories with this couch,” he said wistfully. “Yes, honey. We all do,” I confirmed. Then I had an idea.

“I think tonight we should have our first memory with the new couch. And the old couch will still be here, so it can be the last memory with the old couch, okay? Let’s all watch a movie together tonight. Nigel, you can choose what we watch.”

So that night we watched Indiana Jones and the Last Crusade, and Nigel split his viewing time between the old couch and the new couch, doing in-home couch surfing. At the end of the movie, I asked him what he thought of the new couch. He mulled it over before answering, and then he said, “Well, I would like it better if it had a fabric cover.” Ah! A sensory issue! I should have thought of that! I suggested that he could cover his side of the couch with a sheet until he gets used to the leather. “But it’s not so bad,” he conceded. “I don’t mind it.”

And that’s how we roll – one couch-surfing transition at a time.

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.

When Eating is Difficult

Thanksgiving always poses a problem for those who are orally defensive. And although sensory processing disorder occurs simultaneously with many ASD individuals, it also occurs in those who do not have autism. My non-autistic younger son, Aidan, is highly orally defensive, and has been since infancy. It was so bad that sometimes while breastfeeding, if the milk tasted differently to him, he would scream and act as if I were trying to feed him motor oil. It was not fun for either of us.

The term “picky eater” does not seem to be the most fitting for Aidan, now twelve years old. Nigel, my autistic son, I would describe as a “very picky eater.” Aidan I would describe as a “limited eater.” Whereas Nigel will choose from an array of five acceptable breakfast items, Aidan will eat one (cold cereal and milk, alternating between two types of cereal, and that has only been a very recent development). Nigel will eat any of 12 choices for lunch and dinner, and Aidan is limited to five, and there are limitations even within those five.

He does not eat sandwiches. No macaroni and cheese. In fact, no cheese at all. He’ll eat pizza, but only after he peels off the cheese. No waffles, no oatmeal, no eggs, no CAKE even. For his birthday, he has cinnamon rolls.

I used to fight him on this. I recall when he was four years old that I gave him a tiny piece of lettuce and he refused to eat it, of course. So I sat on the kitchen floor with him and held him and put the piece of lettuce in his mouth and forced him to eat it. And I swore I would never force him to eat anything again.  I tried making bargains with him, I tried letting him go hungry until he would eat what was on the table. I tried reward charts. I tried grounding. Nothing worked.

In fact, the only thing that has worked is respecting his oral defensiveness. Respecting the fact that he has a hard time eating in the first place, and he only weighs 78 pounds, and “letting him go hungry” is the worst possible thing I could do because then his stomach would shrink further, making it even more difficult for him to eat the next time he tries. There are compelling reasons why he won’t or can’t eat many foods, and the best thing I can do is accept it and work with it.

And so, tomorrow, when we go to my mom’s for Thanksgiving as we do every year, we will bring Aidan’s certain brand of turkey hot dogs that he eats. And the raw baby carrots, the only vegetable he will eat. And he’ll sit at the table with the rest of us, and everyone understands (after some years of fruitless cajoling) that he will only eat what he eats. And we’re all a lot happier for it.

First Days and Sensory Processing Disorder

First days of school are nerve-wracking for lots of people, but especially for those with Sensory Processing Disorder. Most ASD people have some type of SPD (or several), but there are also many people with SPD who do not have autism. Aidan is one of them.

In the beginning, of course, I did not know this, but early on I thought he might have something I read about called “low sensory threshold.” He cried when I held him, he cried when I put him down, he cried in the baby swing, he cried in the car, he cried in stores, and he cried at home. He cried about 80% of his waking life. I did not know what to do for this child. The crying was so extreme that it prompted his two-year-old autistic brother to speak one of his first words: “cying.” He was trying to say “crying” but couldn’t get the “r” sound. “Yes, Aidan is crying,” I would tell Nigel.

Aidan was about one and a half when Nigel was diagnosed with autism. At the time, I thought about the fact that Aidan was also not making any attempts to talk and had very sensitive hearing, like Nigel. I wondered if Aidan also had autism. There were many who suggested that Aidan was simply mimicking his older brother, but the signs were there even when Nigel was elsewhere. Nigel’s autism was more on the severe side as a young child, fairly obvious once diagnosed, so if Aidan did have some level of autism, I thought it might have been PDD-NOS. Trying to be objective, I looked at the differences in my sons’ behavior. Aidan made eye contact. He knew how to play with toys. He did not stim. He was just always crabby about something. So PDD-NOS did not seem correct. But what, then?

When Aidan was three years old I was able to enroll him in the same early intervention program that had been so beneficial for Nigel. The therapists evaluated Aidan and informed me that he had problems with sensory integration (SPD hadn’t been coined at the time) and a developmental delay in language. They provided OT and speech therapy, which seemed to help him. But it wasn’t until he was five that Aidan seemed to tolerate his body and his surroundings better. He finally seemed happy.

Aidan continued to receive speech therapy until he was almost ten, and I could tell he was glad when that was behind him. He is now IEP-free (yes, I did the happy dance when I left the last meeting, because now I only have one child with an IEP) and does quite well in spite of the fact that he is the pickiest eater in all of southern Oregon (at least) and hates wearing shoes because “they smash my feet.” He constantly complains about smells that no one else smells, he wears the same clothes for days on end because they’re the only ones he feels comfortable in, can’t stand having his hair brushed, gets carsick, and won’t tie shoelaces or ride a bike. But at least he no longer cries 80% of the day!

And so I was a bit concerned about Aidan’s first day at a new school. School in general can be a pain for SPD kids due to the potential for sensory overload. I drove Aidan this morning so he wouldn’t have to “process” the bus yet, and I think that helped to ease him into the first day. He said the lockers aren’t so bad, and he assured me that he didn’t buy anything at the vending machines. He didn’t get lost, and he got on the right bus to come home. Best of all, he didn’t get carsick!

 

Added 9/13/08: an informative SPD site – click here

Just a Little Shaken

Nigel and Aidan felt their first earthquake yesterday! For someone with a lifelong interest in natural disasters (Nigel), it was an exciting experience. I couldn’t wait to hear Nigel’s reaction, and we had another great phone conversation.

Me: How did it feel to you?

Nigel: Very short but very shaky.

Me: Were you scared?

Nigel: 5.8 usually shakes things off the wall.

Me: I read online that it actually was a 5.4.

Nigel: The news on TV said it was a 5.8.

Me: That was the initial reading, but they revised it later. So what did you do?

Nigel: We went outside to avoid it.

Me: Were you scared?

Nigel: Um . . . I wasn’t scared, just a little shaken. You know, nerve-wracked.

Me: Earthquakes will do that to you.

Nigel: How big was the first one that you felt in your childhood?

[I then described to Nigel some of my experiences with earthquakes.]

Me: What was your first reaction when you felt the shaking?

Nigel: At first I wanted to duck and cover.

Me: What did you do after you went outside?

Nigel: We went to the beach.

Me: After the earthquake?

Nigel: Yeah. That’s what we were getting ready to do before the earthquake.

A little Shake n’ Bake, anyone? First earthquake, then beach. That’s life in LA for you. 

Seeing Sound

More development, more nostalgia:

Nigel turned six a month ago. Not an hour goes by that I don’t think about his disability. There are moments, yes, that I can just enjoy the life we do have, the accomplishments he has made, and for a moment convince myself that our lives are not defined by autism. I can usually find some time at home each day when I realize that we have all been functioning at our own version of normal, and everything is good. Even just for ten minutes.

But Nigel is learning and growing as I thought and hoped he would. I hope one day to converse with him on a level higher than “Would you like a sandwich or scrambled eggs for dinner?” But for now, the fact that he can answer me is wonderful. He rarely screams at home anymore.

This year Brian [my then-boyfriend] and I took the boys on their first camping trip. We went to the coast and got rained out, so we just drove until it stopped raining and ended up at a park/campground in Grants Pass. As we were unpacking the car, every minute or less we would hear the roar of some type of vehicle pass nearby. First I thought it might be low-flying planes, then I thought the campground was next to a freeway and that the noise was caused by trucks roaring by. But it was louder than that. The sound was invasive, jolting. Each time one would pass, Nigel would nearly go into convulsions of fear and sensory overload. This went on for about ten minutes, and I knew we would have to leave if it didn’t stop soon. I ran down a path through some thick bushes and came out on the banks of the Rogue River. About ten seconds later a speedboat roared by, followed by another. I went back and told Brian what was making the noise, and we figured it would be over soon. Apparently there was a race going on, called Boatnik. Brian thought the boys would like to go down to the river to see the boats, but I thought that would make it worse for them to be so close. I was wrong. As soon as Nigel saw what was making the noise, his fear was gone and he enjoyed watching the boats while covering his ears. He even joined Brian in cheering them on! His capacity to adjust to his disability truly amazes me.

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.