Autism Watch: 2007

Posts Tagged ‘behavior

Yesterday was BB’s six month dental exam and cleaning. I’m not sure who dreads them more — him or me? Hmmm, me. Yes, definitely me. I have to drive him down there, almost 1.5 hours in one direction, then all the way home in awful tourist and end of the work day traffic.

If you’ve been reading my blog for a while, you know dentist appointments and BB haven’t always gotten along. So what changed? Finding a new dentist. It may be work, it may take a long time, you may have to pay a little out-of-pocket by going out-of-network on your insurance plan, or you may have to drive a long time, but it’s worth it.

BB used to be afraid of the dentist. Hated it. Now? “When are we leaving, Mom?”

However, it’s still not always good. For some reason, he gets anxious about it and he’s kind of a boogar by the time we get there. You know, the kind of boogar where the other parents in the waiting room look up from their magazines and try to surreptitiously check out what the mouthy kid looks like or if the mom looks abashed. (If you looked, yes, I was abashed. Very much so.) The mouthy kid looked cute, comfy with his bandanna around his neck (should he need to become incognito, you know) and bored, playing with the stress ball in his hand.

It continues in the dentist’s chair. I answer questions about his dental history and habits while he’s being worked on, and he starts to squirm. More and more, in irritation at my responses. Finally, when he gets a clear chance to talk, “Mom, you don’t know what you’re talking about. You’re not in my mouth. Let me tell her.”

Sigh.

My sweet boy disappeared halfway through the drive to the dentist and only started to re-appear about two hours ago. It only got worse from there, though he did cooperate for the rest of the exam, the cleaning (minus the fluoride, thank you very much) and the x-rays. By the time we were 30 minutes from home, he wanted a new family, he didn’t like me and I was NOT his mom anymore.

Who knew?

It was a long night, made worse by the fact that I’d postponed an appointment to the podiatrist for my plantar fasciitis and my foot was killing me. The husband made dinner, and I sat with ice on my foot. Exhausted. Totally drained from his behavior and the rush-rush-rush of the entire day.

Today, he didn’t get better until I finally sat him down and told him he could not yell at me anymore. I sat there, with him unhappy at my presence, explaining why I wasn’t going to allow him to yell at me, or anyone else, anymore. And as for the constant complaining? Three per day. Period. No more. You complain a fourth time and the computer gets taken away. Same consequence if I have to remind you more than once not to yell at me.

I realize it’s an issue of control. He wants his room to look a certain way so when I move the water bottles or turn the nightlight off, I’m changing the way he wants it. When I tell him it’s school at 10am today instead of 10:30am, he doesn’t have control and it’s a change. I get it, really, but that doesn’t make it okay. It’s not an excuse to yell and be mean. So we talked about it, and beginning next week, after we’ve had a couple of uninterrupted days to reinforce the new rules, we’re starting a behavior program that I hope will address his anger and control issues.

I have hope. I just know it won’t be easy. He’s smart and he recognizes that he’s being mean…it’s just after the fact. Tonight, he stuck a note on the door saying he was sorry. Cute, but not enough. It did, however, open the door for him acknowledging that he needs to find some better ways to cope. He actually googled it, he said. I believe it, google is a big tool for him, and he uses it as a springboard for further research and study. If he’s interested, get out of the way, he will do it thoroughly.

Tomorrow we have a homeschool event…same place that “The Issue” happened a few weeks ago. I told him we’d ignore her and it wouldn’t change anything. He won’t let me sit next to him in the class, so maybe he’ll sit in back with me. Not sure. I want him to learn from it, but not be afraid or let her intimidate him. He doesn’t need to stop asking questions, he just needs to be mindful of how he does it. If he does it wrong, I will address it, as always. We’ll see how it goes. If nothing else, I’m super-proud of him that he’s not letting her possible attendance influence him going again. Way to go, BB.

 

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When I picked up ds aka Barnacle Boy from school, he walked out of the gate, in his “I feel naked in this” Tony Hawk tank top and shorts, sporting a face that said he was upset but didn’t want it to be immediately obvious, only slightly obvious. On the brisk walk to the car (which happened to be down the road and across the street…long story that maybe I’ll convey later) he explained how upset he was with this particular girl in his class. Let me preface that by saying the girl does bully him, it’s been reported, and it’s being handled. Yet, looks like she’s either really sneaky, getting away with it somehow around his aide’s increased supervision, or he’s exaggerating. Hard to say.

Anyway…we get to the car, and on the one-minute drive home, his speech is coming faster and faster. We make it home, and he continues. I warn him that he’s dangerously close to his five-minute limit on complaints about a specific topic, and he continues, taking every possible second to get it out of his system. Then, BOOM. It hit the fan. Just as dh walks in the door after picking up my car (my new car, mind you, which needed a new windshield already) and the bank (we’re attempting an out-of-state move, so property has been chosen but needs to be bought)  to hear ds explode in anger. It escalated to self-injurious behavior and overall, it was a good hour to calm him down.

And, it was out of the blue. He’s been better lately, at least in terms of this type of meltdown. He still gets upset, but social/control issues have taken top billing lately. His headaches virtually disappeared when he was out of school and on vacation, but he had one yesterday and is reporting one now.

He’s still not okay, but dh has it under control. He just sat with him while he did his one homework assignment, and we gave him some pain reliever. So why am I blogging right now? I’m completely and totally unnecessary at this moment, other than getting dinner finished. And I’m okay with that. I do Meltdown Control, referred to as “MC” in the future, every day until he gets home. Fortunately, he’s home early, able to pick up BB from school, and be here the rest of the night with him. They look pretty darn cute cuddling on the couch, and I’m darn happy to let them stay that way. MC is exhausting.

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. 😉

This week, I tried to enroll my son in an event where I thought he’d be okay. He knew about it prior, and wasn’t totally opposed. He’d stated a couple of demands, which were do-able, and agreed to go. I knew it’d be a stretch, but he’s done it before and while we never quite know what will happen on The Big Day (in front of an audience), no disasters. I knew we’d have to pick our battles while there, and not sweat the small stuff. I was officially involved, and planned on being accessible to him the entire evening. All the plans were set, and things should go smoothly, right?

Not so much.

As soon as we arrived and ds saw a lot of other kids running around, both young and old, his ADHD side came out. Big. Time. An instructor stepped in, wonderfully so, and got him back on task, though it wasn’t without some dancing on his part. Dancing is a battle I won’t fight; he wasn’t disruptive to the other kids, he wasn’t touching anyone else, and he was still doing what he should have been. But that’s when it went downhill.

Maybe, because I was in a place where I knew most people knew about him, a place where you wouldn’t expect judgmental stares, I got comfortable. Maybe I assumed people would be understanding, based on the environment and our longterm involvement with this group. Maybe I just figured that kids were kids, and parents would be just having fun watching their children in this event, and not really worry about someone else’s kid. I don’t know, but in any case, I was wrong.

It didn’t take long at all before I saw a few gestures. A few stares. The stares lengthened when my older dd tried to step in and help. Personally, I think she saw the stares and glares before I did, and her defensiveness came out, so she joined in to play with him and downplay (pardon the pun) his behavior, and I love her for that. But, I don’t think it helped. The stares continued. Sadly, I even saw a couple looks of total disdain, complete with scrunched eyes and curled lips, as though someone had brought an unruly poisonous naked snake to a mouse party.

And that was just the beginning.

We continued on with more preparation, and ds refused to cooperate. In fact, he hid under desks, chairs, and any other piece of furniture an adult couldn’t fit under. I resorted to calling dh and handing my very expensive new Smartphone to ds so dh could talk him out. He did do that — ds eventually came out — but by then, we’d missed most of the practice, and more and more people were walking by staring. I told ds he didn’t have to participate. He relaxed and started running around and smiling (noisily) again. And that was that.

Me though? I had to remind myself a few times that I was not going to lose it in front of people, particularly people who looked at my son like he was a wild out-of-control brat. I felt embarrassed, and then immediately ashamed of that embarrassment — why should I care what a bunch of people who are ignorant of my son’s issues think? I felt angry. How dare people look at him that way. They have no idea exactly how far he’s come, what an amazement he is, what a miracle. And how dare people be hypocritical, to look at my son, in this particular building, without the love and compassion and tolerance we’re taught to have?

For a few minutes, I felt the same helplessness and lack of control I felt in ds’s earlier years. The ‘what do I do now?’ panicky feeling, where you want to grab your child and run home because you have no clue what to do and you just want the event over with. Four years (to the week) after his diagnosis, and those moments apparently still come.

Thankfully, we have friends there. Their support curbed some of my anger and frustration. They expressed love for my child, and told me to ignore those who didn’t know him. They spoke the truth, but it can be hard to do. My husband reiterated it when I returned home, reminding me that WE know ds, and if ds is happy and behaving as we know he can or should be, that’s all that matters. I need to let go of making ds do something just because ‘normal’ kids do it. If he’s happy, I need to not worry about him missing out on something. Sounds so easy, and makes so much sense, but there are days it doesn’t just fall into place.

Later that evening, ds sat at his new desk in his new room, in his new red flannel soft polar-bear-covered pajamas, doing his math homework. His hair was brushed and curled over his collar. He declared his tiredness, and climbed into bed, after I fixed the proper blankets into their proper places. After a sweet goodnight prayer, where he prayed that I would have a good day and thanked God for all he does for him, he was asleep in minutes.

What a doll. I am so blessed. He’s an adorable, loving, smart doll who just happens to be hyper and have social and communication issues and meltdowns that’ll put hair on your chest. And he’s my doll. He’s my gift given to me to raise, and dh and I are the only ones who know how to do that. So for those who want to stare, go for it. Your actions aren’t just obvious to me, but to others. They speak volumes. I may not know your name, but if you think about it, you know even less of my son that enables you to be so disgusted or turned off by his behavior. (And for the woman who put up her hand to keep him away from you — I don’t even know what to say.) Everyone out there with children, it’s just the matter of a funky gene or a vaccine or some other environmental toxin that separates us from you. It’s not our parenting, and it’s not my child’s intentional behavior. It’s as much of my son’s personality as rudeness or lack of tact or judgmental behavior is to a ‘normal’ person.

And in the end? I’ll take my son’s behavior over that. I’ll also continue to be so proud of who he is and what he’s become. I’ll refrain from waving my hands to quiet the room to educate, when it’s really no one’s business, and instead, I’ll save my time and energy to continue to help my son. I refuse to let the issues of others make negative changes in my life. I can’t say that I am not disappointed. There are places you don’t expect that type of behavior, and this was one of them. I can’t say that I don’t feel like autism awareness has a LONG way to go — people out there still think it’s an excuse, or it can be medicated or disciplined away. I try to blow off what I see as selfishness, a refusal to realize that one’s own children aren’t the only ‘perfect’ kids out there, or to acknowledge that one’s own style of parenting isn’t the only way. And I can’t pretend not to be a little sad that people are missing out on the gift that is our children. I won’t let their negative energy make me miss out on it either. Every day with our kids, perfect, ‘normal,’ ‘neurotypical’ or not, is a gift. All kids are miracles. We’re all in this world together, and loving thy neighbor works a lot better when we move past the stares and instead work on acceptance — if we can’t accept small children, how can we really accept any adults.


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  • Payor: Just wish to declare the document is usually as unbelievable. The actual lucidity with your write-up is simply good and also i possibly could think yo
  • Kim: amen!!!!!!!! Thank you.------ Mom of 5 year old verbal (with speech apraxia), self injurious autistic son.
  • Emily: Thank you so much. I share your pain and am glad to know I'm not alone in my struggles with my very verbal autistic spectrum son.
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