Autism Watch: 2007

Posts Tagged ‘communication

When my son was dx’d initially, online communities saved me. My husband was in serious denial, and I didn’t know anyone offline that had any experience with autism, so I spent hours seeking out help, support, information, anything. I was one of those people who knew nothing about ASDs, as even with all my son’s issues, we assumed that at worst, we were dealing with Sensory Integration Disorder, so we started this with absolutely no clue. I was desperate to find people who knew what we were dealing with and could give us some guidance, and email groups were it.

Since then, there have been numerous times I’d turn to the online communities for help — referrals to providers, opinions on therapies, suggestions on handling situations, or just “I know how you feel.”

But this week? I feel like the time has come for me to step away. I want to stay on top of what’s going on in the community at large, such as research, news, events, etc., but I can do that without being actively involved in email groups. I unsubbed from five groups yesterday, and while I felt just a tinge of sadness, I was overwhelmingly relieved. I felt, and feel, enormously liberated, and I am even more glad I did it today than yesterday.

Lots of things contributed to the decision — not just one event, though it was one email that finally pushed me off the fence. Over the years, I’ve seen a lot of emails that make me shake my head. I can participate by stating something that’s going on and get no response, and someone else two minutes later can say almost the same thing and get nine sympathetic responses. That’s the nature of the online community, as timing is everything and people respond when they’re available, but it’s disheartening when you feel invisible. I’ve seen new members get jumped on for asking basic questions. A lot of people ask about the flu vaccines; some of those people are welcomed while others are borderline attacked or get posts implying they’re simply not educated for even considering the vaccine. Some people want to debate when all you want is information or share your opinion on someone else’s. Basically, any response you make is fair game for attack anymore, and it didn’t use to be this way. I’m not sure what’s going on in the autism community, but the divisiveness that used to be focused on biomedical vs. traditional is growing. We as a community want the freedom to do what we want with our children, as in “How dare they try to make me vaccinate!!” but we turn on each other so quickly. I’ve mentioned it before, so I won’t digress but I wonder what it’ll be like in another six months. Where will parents of newly diagnosed children go then?

Don’t get me wrong — not every group is this way. There are wonderful people in the community who will still take the time to guide, support and give a virtual hug, but there are many people who will tell you you’re wrong, make assumptions about what you’ve said/done, and give you a virtual snub. Be careful what you share online. You can only explain your concerns or situations in so many words in the written form, and it can and will be open to interpretation by anyone that sees it. Responses can be harsh, even if you’re in the worst mood to deal with it. If someone has made a judgment about you, such as “not biomedical, not doing enough,” the responses you get will be tempered by that pre-formed opinion.

It’s like any other group, online or off. I’ve learned I just don’t have the time anymore to engage. I don’t want to read the arguments regarding what group to donate money to, I don’t want to read about how disgusted people are that others in the world dare to believe in a flu shot, and I can’t take one more whine from a previously stay-at-home-mom who just started getting IHSS a few months ago and is home all day alone while her kids are in school yet is peeved that IHSS rates are less. Or how we working moms get “respite” while we’re at work all day, yet it’s our tax contributions that are paying for respite for others. Life is stressful enough, I don’t need to have it added to and when I found myself hitting “delete” more than “read,” I know it’s time.

Don’t let my opinion sway you if you’ve never been in an online community and want to give it a shot. Really, they aren’t all bad. But, be cautious. Consider what you’re looking to get out of responding, and what you can live with. Be prepared for negativity, and don’t give identifiable details. I used to answer just to join in, then I realized how much time I was wasting — I work, I have a job and my time is at a premium, so if I want to join in a conversation, I have other opportunities with people I actually know and trust. That’s the problem with the online world, it’s easy to feel a part of the group and easy to feel you can trust people because ‘it’s just words.’

I’m going to save my words now for my anonymous blogs, for my offline friends, and for personal emails between individuals. It’s truly liberating to realize how much time I’ve saved myself and how I no longer need that kind of communication. And I’m realizing that wisdom does come as you get older! Who knew I’d ever really believe that cliche.

Now I’m signing off to see if I can calm the little guy. He’s getting some serious anxiety over waiting on someone to arrive, and I need to help him work it off or he’s going to be an overstimulated bundle of nerves.

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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. 😉

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.


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