Autism Watch: 2007

Posts Tagged ‘speech

I left for a while. Okay, a long while. Things were busy. Things were *mostly* good. We began homeschooling and BB is thriving. We took a trip. Dogs are doing well.

Truth is, I ran out of things to say. Re-hashing my day with BB was losing its appeal. As he does better, which is what we hoped and prayed for, there were less autism-related issues to share. I also got tired of using my blog as a place to re-live irritations by sharing in the hopes that a) others could relate and maybe shed some insight on what to do, and b) maybe the irritations would stop happening.

Ha.

So I’m back. BB is still much better, and each day, we see more and more of him coming out. He amazes me with his humor and just yesterday, a computer animation he put on YouTube surpassed 9,000,000 views. For reals. He’s got a bright future ahead.

I’m still going to share the good and the bad..and unfortunately, in addition to the good, I have some bad.

Some days, when I’m out and about, I run into people who impress me and inspire me. I see kindness in strange places. But sometimes, I see ugliness. I see close-mindedness and “This is my way, so it’s the right way. The end.” I try to remember that not everyone is this way, but when you’re already tired, stressed, or just plain burned out, it’s easy to let the bad outweigh the good, even temporarily.

Last week, I took my son to a long-awaited night at a museum event. We spent the night, along with a slew of other kids that he didn’t know, except one. He was oh.so.excited. They had a presentation and he asked a lot of questions. He likes to clarify rules — maybe it’s irritating to some, but I don’t know, I’d rather he get the clarification he needs rather than just wonder and break a rule, which would have far worse consequences. He also likes to punctuate rules with “Wow. Okay.” or “What?” It’s not disruptive, it’s not over the top, it’s just a far cry from the kid who wouldn’t go to a public event or speak up if he did. I’ll take this BB over the BB of several years ago. If I’d been next to him, I’d have nudged him, but to make a scene by ‘excuse me..excuse me..excuse me..’ to walk up the only aisle, in the middle of the seats, to get to him and tell him to hush? Humiliation and more disruption. I was in the back, where parents usually sit, again, trying to do the right thing.

In comes one of those women, you know, the kind who has perfect children that would never speak out. The prodigies. The kids who can break rules in other ways, and we’re supposed to overlook them.  The kind of woman who sits with all the kids rather than with the adults, oblivious to the fact she’s blocking the view of kids sitting behind her, the kind who thinks the event is solely for her kids and the other kids are just in the way. Come on, we’ve all seen them. Maybe some of us don’t care about their existence, and maybe some agree with that kind of behavior, but I don’t. My child is just that: my child. If I’m there, I will guide. I will discipline. I will nudge. I am in charge, other than the teacher. If you don’t care about their existence, maybe it’s because they’ve never poked your child on the shoulder to say “Stop interrupting!” or because you are easily irritated when others’ kids do something you find misbehaving so you speak up. (If you’re one who speaks up to strangers’ children, here’s a thought: mind your beeswax. If it’s not your house or you’re not the teacher, restrain yourself. If you can’t control your behavior and reactions, don’t expect your children, or others’ kids, to control theirs either.)

This put a big damper on the event. It took me two hours to calm him down. He was angry. He doesn’t like to be touched by strangers, and in my opinion, he has a right to feeling that way. Yes, ideally, he’d be able to better handle it but right now, I have bigger fish to fry. The fact that I got him to an overnight event is a big deal! I can’t downplay that, or let anything else do it either. And I was angry. All the work I’d done was about to get flushed away, all because someone else was irritated by something small and not necessarily even legit. She got to go hang out with her friends and smiling kids, and I was left with an angry child unable to enjoy the cool stuff all around him, a kid who spent the rest of the night trying to block out the sounds because the overstimulation (both physically and emotionally) had him super-sensitive to sound.

No, I didn’t approach her. Should I have? Yes..but to do so would have meant I would have had to dredge it back up in front of him, and that wouldn’t have done any good. Instead, I suggested that we have some type of awareness program as a co-op offering, and that was shot down because, well, it’s acceptable to tell others’ kids to shut up, and if I want people to not do it, or not touch him, he should wear a shirt announcing it. (Okay, so I’m exaggerating a little bit with the shirt bit but the gist is the same.) The response was that I should pre-emptively tell everyone, talk to the leader, and somehow foresee anything that *might* happen and cover it with a list of Do’s and Don’ts.  I’m still amazed that I should know that someone might butt in my business and touch him and/or tell him to be quiet. I mean, really? Maybe I’m naive and people do that all the time…but keep in mind, my son was a stranger to this woman. He was familiar with this outing as we’d gone to many daytime classes there, and he felt comfortable. There goes that! Now I am supposed to sit with him..and by the way, let’s not forget that the teacher isn’t in charge, any parent around has the right to step in, duh! What was I thinking?

/rant off

We experienced a problem, fixed it on our end and tried to advocate so that we didn’t experience it again in the future nor did anyone else. But advocacy is often unwelcome. People don’t necessarily want to hear it. They want us to not bother their perfect worlds or to come out in public where we can teach our kids what they need to do. People don’t want to be inconvenienced. Opening your mind or being willing to show tolerance — which is pushed all over the place in this political campaign, to everyone except the disabled — is not something everyone’s going to do, regardless of how hard we tried.

I will admit, I cried last night. Frustration that I tried and was rebuffed so ‘sorry, too bad.’ Sad that these people walk around, head held high, completely ignorant of the people around them. Upset that instead of making the situation better, who knows if people will single him out now in the future. And if I find a parent went to the venue management? Possible legal involvement. I don’t mess around. Invisible disabilities are discriminated against on a daily basis, and I’m at a loss as to how to change that. Oh, wait, I was told to start a support group. Uhm, yeah, great, where a bunch of us can sit around and talk about how we’ve all been rebuffed? We can come up with all these perfect plans we want, but in reality, they each rely on the rest of the world showing compassion. If we can’t even rely on people to mind their own business or be nice, how can we place bets on compassion? I won’t let it happen to my child again though. No, I won’t go around telling everyone ahead of time — he’s entitled to his privacy and BB’s now at the point where he wants no one to know. I told him that means he has to be on his best behavior, and he’s trying. We’ve also worked with him on responding properly when someone corrects him and/or touches him. There will not be a repeat occurrence.

I’m not of the belief that children collectively belong to a community, or that their feelings/thoughts are any less important than ours. I get that things happen, and that in groups, he very well may be disciplined again by a, ahem, well-meaning adult, but it had better be someone that knows him and has implied permission..not someone whom he just happens to be sitting near for the first time.

Onwards and upwards, I hope?

Advertisements

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. 😉

The last few days, we’re noticing more and more situations where ds is unwilling to listen to the reason, any reason. We try to tell him something brief and clear, such as “You need to get into the bath now” (after his 10-minute warning) and he blows up, yelling, spinning into a full-blown meltdown, ending with him quietly sobbing, telling us he only wanted a minor deviation in the plan but he didn’t communicate it so therefore, we didn’t understand. In fact, looking back, this is pretty much what has happened each time he’s melted down this past week; a minor issue explodes and we’re trying to figure out what pushed him over the edge and what he was trying to tell us that we missed. We can be face-to-face, him raising his voice, us trying to keep ours low, and struggling to communicate.

I’ve had a lot of people tell me “You’re so fortunate your son speaks.” Yes, they’re right. We are. And we are grateful. But, speaking doesn’t mean communicating. An autism diagnosis means that there’s some problem with communication, now or in the past. Some people who see children with autism that are verbal fail to grasp that autistic kids can talk, as in “where’s the communication issue?” Not only do they not see how far the child has come, but they don’t get the difference between speech and communication. They are two entirely different things. So while a child may have language, it doesn’t mean they use it right, or that they comprehend the meanings. Then throw in body language, and communication can even get much more difficult.

Last night, cuddling with my sweetie after the last meltdown of the day, I was really sad for him. He felt that he’d been telling us so clearly what he wanted, and not only was he trying to get out of doing what we wanted, but we really didn’t get his meaning…at all. And because he was so busy trying to get us to understand his meaning, he was getting more upset as time went on and making less sense. But, in his mind, he made sense. What exactly do you do then?

Since school is starting soon, and this problem seems to be getting worse (because he’s getting older? getting bored at the end of summer? who knows?) I want to make it a priority to work on. I’d really love some recommendations of good books to address the communication gap we’re experiencing. Or a suggestion of who to speak with: social skills therapist? speech therapist? psychologist? I don’t think he needs help, but rather we need to know how to work with him to help him express himself sufficiently, without the anger that builds up, then the sadness that just breaks our hearts.

And maybe it will also help tackle the meanness that comes along with it. I’m so glad he can say “I love you, Mama,” but the “You’re a jerk, Mom” hurts.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates


Advertisements