Autism Watch: 2007

Posts Tagged ‘sensory

I was off work today — freebie day from upper management, yayyy! — and decided it was a good day for BB and I to have a lunch date. We’d considered one of a few local venues but with it being rainy, any tourists in town will be inside, crowding those venues. Not a good idea, so we opted for food. I wanted to expand BB’s food interests so I chose a local Asian restaurant, one that serves food from four different countries. Score!

BB chose two different kinds of sushi rolls (both spicy) and was looking forward to trying them with chopsticks. Just as we were served our soup/salad, a trio came in to sit in the booth behind us. Like many people locally, they were very loud. We have yet to figure out why so many people here are loud. It’s almost painful at times, and you find yourself stepping away, appearing rude, while they have no clue they’re talking much louder than they need to be. This trio was giggling at a glass-breaking pitch, and I watched BB begin to shrivel on his bench. Hands tightened up into little balls. Neck shrunk onto his shoulders, veins standing out.

I tried to distract. I joked about the silly names on the menu (as BB told me it was impolite to laugh at others’ food names) and grabbed any item on the table to try to redirect his attention.

No dice.

He wanted me to ask the management for help, so I tried to explain to him that it’s just not done that way, and that people don’t necessarily realize they’re loud. We had quite a conversation about social skills in public places, how management could handle it, how we’d handle it if we were management, and so forth.That worked for a few minutes. Finally, he’d had enough. When it got to the point where he was going to blow if we didn’t leave, we moved to a different booth. We picked up all our stuff and went to the next one over, the furthest available booth.

For about 30 seconds, blessed silence. Ahhhh. Problem was, it wasn’t that we’d moved far enough to not hear them or that they’d seen us and lowered their voices. Instead, they gestured and whispered about how we moved. Then bam-o, they began to talk normally again. Not a blip in their decibel level. The waitress came over and asked us what happened, and we explained. She was nice, acknowledged the sound, but that was it.

Thankfully, food came soon after, so I began to show him how to use chopsticks, what each of the items on his plate was and what to do with it. Yum!

In the end, it was disrupted somewhat but still a good lunch date. BB learned some new things and tried some new things. Success!

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I’m going to warn you — I’m going to be very candid here. I don’t need the flames if I offend, I’ve got enough already going on, so I really hope readers can understand that this is what it’s like in this part of the community and just take it for what it is, my feelings on a sensitive topic that I deal with daily.

Before I go any further, let me just say: speech does not equal communication.

My autistic child is verbal. Very verbal. His vocabulary amazes people, even his parents, daily. That’s the good news.

My autistic child is verbal. Very verbal. His vocabulary includes a lot of words uttered, yelled, and screamed solely to upset others. He speaks so quickly, he has no filter to stop the inappropriate commentary from coming out unbidden, towards anyone, even when you least expect it. When he’s upset, which is frequent, the words become meaner than the usual ‘stop,’ or ‘shut up.’ They might wish me dead. They might wish himself dead. And that’s just the beginning.

On a good day, or in a good moment, he uses his words to communicate more properly. He tells me he has homework to do, that he wants to eat cookies, or that he doesn’t feel well. Well, let me back up a minute. He attempts to tell me he doesn’t feel well. He interprets anxiety in ways we can’t understand, so when he tells me he has a stomachache, it doesn’t necessarily mean his stomach aches. He can verbalize that something’s wrong, but can’t always pinpoint it.

When he’s upset, he sometimes gets so garbled, we have to remind him to use his words. He can go non-verbal for a few minutes or a while. Sometimes he gets so hysterical, we have to remind him to use his words then as well.

Let’s take a typical day out of our recently, newly typical kind of week. He wakes up, we play our “I Love You” game, and he tells me he’s hungry. I make him the food he wants while he cuddles under his blue blankie and watches some recorded TV. He eats, spilling a good amount on the table, and when he’s done, goes back to the couch. I’m the anal/uber-organized mom who has everything ready the night before, so mornings can go easily if he’s in a good mood. Problem is, he doesn’t want to go to school. Today. Tomorrow. Ever. When I tell him it’s time to get dressed, he can whine for a minute like any neurotypical kid bothered at the interruption to Pokemon episode #317, or he can flip out and start yelling at me about how he doesn’t want to go to school, how his stomach feels pinched or how awfully mean I am for making him go. As if it’s not already upsetting enough to have to make him go when he’s happy, now I have to make him go when he’s calling me names and says he wants to go live somewhere else.

He has no idea of the power of his words. And even if he did, I’m not sure he’d care. We work on this daily. None of his tirades are acceptable. Every inappropriate comment is addressed. But, just like any aspect of autism-related behavior, it doesn’t go away overnight. Some of it’s such a problem, it never goes away.

So here’s where it gets candid. Despite so much autism awareness, people still hold verbal children much more accountable for their actions than a non-verbal child. People still tend to act as though the words of an autistic child are willful and intentional. They’ll excuse him when he freaks out because the vibration in a ceiling light bothers his ears, but they won’t excuse him when he uses mean words. When he gags up dessert because he can’t tolerate the consistency of nuts in a brownie, they pay him on the back and offer him a chocolate chip cookie. “Poor thing.” When he says it’s a “stupid brownie and the cook should learn how to cook without nuts,” the tolerance goes away. What people don’t get is that it’s the same thing. For one behavior, he gets “poor thing.” For the other? “Brat.”

So what brings this to the forefront of my mind right now? Our respite nurse just quit. We were called by the agency and given an excuse reason that doesn’t really make sense, and she didn’t even tell us or take the time to say goodbye to our son. (Hard to say goodbye when you cancel on your last visit, though we didn’t know at the time it was the last time.) The last time she was here, BB gave her a hard time and told her to shut up and be quiet. Definitely unacceptable, and we told her she needed to reprimand him, it was okay with us, and we also talked to him about it, in front of her. We thought it was over with, and that she understood. Instead, we get a cancellation for last week, and a permanent cancellation today. The agency is working on find us a new nurse, but I have serious concerns and know I have to have a long talk with the new nurse when one is found. (And I think I broke a new record for the number of “times,” ha that the word “time” was used in one paragraph!)

But, there’s a big picture here. If I had a dollar for every time someone told me how awesome it was that my son can speak, I’d be a millionaire. Yes, it is awesome, but it doesn’t erase all the other things. It doesn’t negate a self-injurious tantrum or a book/food/toy slinging-fest. It doesn’t fix the medical issues (potty issues, rashes, headaches), it doesn’t remove the sensory issues, and it doesn’t resolve the tics, repetitive movements and obsessions that get in the way of regular daily life. And it only impedes social interaction.

If you don’t know he’s autistic and you heard him get upset, you’d think he was just an obnoxious brat with parents who haven’t taught him how to behave. Now I wonder if the nurse thought this, and I know we had an aide a couple of years ago who thought it. (And maybe a teacher in there, but that was at our ‘old’ school.) If someone has the wrong idea about autism, they don’t seem to understand (believe?) that autism is a spectrum. A child can be verbal and still be on that spectrum. Being verbal is just a skill or tool that a child has, just like some kids with autism are savants and some can easily tolerate noise and some are able to control their anger without having a tantrum. If people started to view speech in that perspective, I really think things would vastly change.

But in the meantime, there’s still a bias. I’ve had a few people be quite mean to me that I’ve had the audacity to ‘complain’ that my child has issues. “At least he talks.” Yep, he breathes, too, so I guess I should be okay with everything else?

I understand that having a child who cannot speak is heartbreaking. I can’t say I know how the parent of a non-verbal child feels, because I don’t. But I don’t think that a parent of a non-verbal child can understand how I feel either. I wouldn’t dare to make a comment about their child, so why is it fair game to say it to a parent of a verbal child? Why is it alright to diminish everything else?

So this is a bit of a rant. I’m tired of the bias, and it’s finally coming out here on my blog. Because my child has speech, he is held to a higher standard. He’s expected to behave, to use only nice words, and to not get angry. He’s expected to suddenly have skills he doesn’t have, all because he can speak. Forget the fact that he can’t interpret body language or facial expressions, that he can’t understand the whole personal space issue or that he takes everything literally, he can speak! Why am I complaining, he can talk!

Life isn’t so easy on the other side of the spectrum. Everyone should say that, and mean it.

To you professionals out there that decide you want to work with autistic or special needs children, please remember they come in all shapes and sizes. You may work with severely affected, or mildly affected. Don’t just study up on the severe, the ones that are the stereotype of autism, but the full range. More importantly, get a thick skin. If you go into the field of special ed or medicine, or anything related, toughen up. Be part of the solution, not part of the problem. Yeah, that’s so cliched, but it’s real — if you can’t tolerate a child telling you to shut up, turn in your employee ID and head home. Sign onto the computer and look for a job a field without children. Or, remember that you’re working with a child with a disability and sometimes they’ll say things that you don’t like. Remember that they’re not your children, but rather someone you’re paid to do a job for, and that job is teaching and supervising. Teach, supervise, and go home and impose your personal feelings on your own children. When you’re on the job, do the job. You don’t have to like being told to shut up, but deal with it. Don’t dump on a parent at the last minute, ruining their only night out with their spouse all week long, and don’t add to their load by refusing to come any further because their child hurt your very delicate fee-fees. Suck it up. Or, try a new career. I have a job. I don’t like everything that I hear all day long, but I shake it off. And I even get called names. Frequently. (I’m in management and I deal with the public all day. Enough said, right?) I don’t like it, but I recognize it for what it is; I breathe in an extra breath, think about how I’m going to appreciate that paycheck when it comes, how glad I am to have a job (especially in this economy) and how I can leave it behind at the end of the day…and how that nasty person is someone else’s problem then, as long as I’ve done all I’m being paid to do to try to fix things then and there. Isn’t that the epitomy of a job? Doing what you’re paid to do, and doing it well? If you have moral issues with a job, then quit, but don’t take out your inability to handle something on a disabled child.

Rant over. Maybe.

I really think it should be required of any/all people working with children to be fully trained in all aspects of autism spectrum disorder. Don’t just train people in all the nuances of working with a verbal and a non-verbal autistic child, but teach them compassion towards both. Teach them to not treat one better/worse than the other. Teach them that just because a child doesn’t physically look handicapped doesn’t mean that they aren’t. Teach them to keep their pre-conceived judgments to themselves when they’re on the job, and remember that they’re dealing with someone else’s child, a child loved more than anything, a child worthy and deserving of respect, even if they’re not necessarily able to give it at that time. They’re also dealing with a family already overtaxed, and a family, and child, who need consistency. (Symptom of autism: extreme need for sameness.) Refusing to work with a verbal child is not just a change in your schedule and a relief to your overly-sensitive feelings. It throws a wrench into the lives of several others, and can’t be easily remedied. And if it’s not something you think you can find a new way to deal with? My advice is to see above, and look for a new job. Working with special needs children is definitely not for everybody, but if you put yourself out there, do it right.

As for me, I’m on the hunt for a new nurse. This next one is going to be the unfortunate recipient of a long talk about autism, and some questions on his/her tolerance level. I’m not going through this again. In California, our budget is so far in the tank, if we don’t use our respite hours, we’re told we could lose them. But, if our nurse refuses to show, and then they can’t find someone to replace her quickly enough (or not at all) how fair is that?  But I won’t digress. I’ve already written a very long diatribe on a few things and all the while, I’ve been listening to my son complain about having to do what he sees as an inordinate number of math problems. (Who knew “regrouping” was actually “borrowing?”)  I’ve had to re-type a million words, and I’ve had to stop two million times. His constantly incessant complaining is killing my concentration, and while I do love to hear his voice when he’s not mad, he can also go on and on and on and … anyway, on and on about a topic of interest, which in between math problems is “Total Drama Island.” In that time, he could have easily finished all that math homework. So the obsessive talking also gets in the way of getting things done. (Both his and mine, but for the sake of my point, we’ll just focus on his.) And now we’re obsessing with the social issues he’s facing during his days. Maybe we’ll finish math homework sometime tonight? It is mentally exhausting. Another side-effect I forgot to mention.

In the end, sure, I’ll take verbal over non, but please don’t use his ability to speak against him, or me, in any way. I can be very verbal, too. 😉

A few months ago, I chronicled a visit to the dentist from a different perspective. Here we go again, since it’s the easiest way to fully describe how hellacious routine things can be.

Ds, or Barnacle Boy, has always had a difficult time with haircuts. After dh developed a steady routine with me after his first haircut at age 3.5, it got a little better, but only if the routine was followed each time. It included time to adjust to the chair, the tools, patience during the cut, and a balloon and treat after. Fast forward five years, and BB has long hair. It’s a combination of not liking haircuts, wanting to have cool hair, and wanting to be able to hide his eyes behind his hair like it’s a curtain. We promised him no haircuts (other than rare trims) if he washed it and brushed it; in other words, it had to be clean and no knots. This past week, it came time for the second of trims, and he was really not happy with it. It took a couple of weeks to get him to the point of readiness, and dh insisted I take him so I could direct the stylist. I think that was the first mistake.

I drove him early on Saturday up to the stylist, expecting a wait of at least a few minutes since there were already others in the waiting room. That would have given BB some time to adjust to the sounds and smells and not feel rushed, but they had an immediate opening and he was called right in. Autism needs an adjustment period to any new environment, and that didn’t happen. Autism doesn’t like different odors, lighting or crowds and the accompanying sounds without prep time. To make things worse, I’d forgotten my cellphone in the car, and BB wanted pictures taken so I had to run to my car to get it. (It didn’t help that I park my new car way away from mainstream traffic, so it wasn’t a two-second jaunt.)  I returned quickly, thank God for stamina from running daily, but then the problem was, he didn’t tell me where he wanted the pictures taken, or of what, specifically. I shouldn’t have assumed it was just typical pictures of him getting his haircut. That would have been too easy, and nothing’s easy with BB. Autism doesn’t like to be out of control and have a curveball thrown at it.

The stylist already looked put out by BB’s behavior, wanting to know what was up with him. I whispered to her what it was, and that patience was her best tool. Autism needs a chance to speak its mind and control the environment a bit. I meant my pointer in a helpful kind of way, for her benefit as well as his, but I’m not so sure she cared for my advice. (But, too bad, he’s a paying customer and I’m asking you nicely.) He started to flip out over the white piece of fabric that gets wrapped around the neck to prevent hair from getting inside the collar; autism doesn’t like tags and tight things, so the stylist said no problem and didn’t put it on. But, by then, the damage was done. Autism was out of control.

The salon was fairly crowded for early on a Saturday morning. People were staring. I was trying to quiet him down, and apologizing to the stylist at the same time. “Don’t take it personal.” He wasn’t saying anything bad to her or about her, but he did make sure everyone knew that he liked the “other” place better, he didn’t like this place, and didn’t ever want to come back. Stylist would say “head this way” and head went that way. Stylist would say “hold your head up” and head went down. Autism was mad.

Finally, he was done. Fastest haircut he’s had yet, though I don’t honestly think the stylist needed to push it that fast. She let her personal feelings, e.g. “get this kid OUT of here” get in the way. So, he’s right. I won’t take him back there. The manager approached me at checkout, while BB was trying to escape, I said “no, stay here” and he ran anyway. People were staring. One guy in particular looked flabbergasted (okay, there are other words but that one’s just fun to say) that he said no and ran out. I focused on the fact he didn’t run away, just outside the door. I can live with that. The manager asked what was wrong, and I explained to her. She was very nice, and didn’t seem thrown at all. But, still won’t go back there. He may be a handful, but he’s a child, a human with feelings, and a paying customer.

We went straight to the car, didn’t pass Juice It Up and didn’t collect a prize from the game machines at his favorite pizza parlor next door. Straight home. He complained all the way home about how his hair was too short, how everyone could see it, talk about it and not like it. Autism was on a roll. We pull into the driveway, dad’s walking out front just in time to watch BB slam the new car door. BB decided he was not going to go see the Easter bunny for a picture; in fact, he was going nowhere. Really. Two hours later, we were getting into the car to get our annual bunny shot. He smiled. The bunny was patient. The line was short and BB bought a stuffed monkey he named Butterscotch. It was a promise to us that he would stay at school all day, every day for the month of April. Do you want to know how it’s gone since? I will update that story tomorrow. Right now I have to go see if the school has answered either of my emails. The nurse and I are bonding, and I’m on her speed dial. Monkey see, monkey do? NO way.

You poor thing! You don’t have to finish that. I don’t want you to have a sickness, by all means throw the rest away…after you stop gagging.

You’d have thought it was brussel sprouts. What was it? A chocolate covered donut.

My son’s feeding issues have returned with a vengeance. Years ago, he ate 8-10 things without complaint. Then it increased, and he ate much better, though still with sensory issues — he’d gag easily, as textures really bug him, smells would bother him, and he was very limited in what tastes he wanted. Chicken nuggets have lasted throughout the years, and pizza’s a favorite the last year or so. But lately, he’s back to only wanting pancakes for breakfast, a turkey sandwich (no cheese, just mustard) for lunch, along with a selection of several snacks (like certain crackers, grapes, homemade cookies) and every dinner he wants chicken nuggets or pizza. Everything beyond that is a battle. He gags, wretches, whines, complains and will run and hide if made to eat anything else. Part of it appears to be the food, and part appears to be just the act of sitting still.

So, I didn’t say a word when the donut went in the trash, and I happily heated up his pancakes knowing he’d at least have a full tummy. But, in the end, what to do? Are food issues a problem with your child? I’m open to any/all ideas on increasing my son’s interest in food and getting beyond some of these sensory issues.


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