I have to go to a meeting at Ian's school at 10, and I don't want to go.
The school is offering an ABA training session for parents of the kids in the transitional class (the high functioning class where the kids have the potential to be mainstreamed). Applied Behavior Analysis is one approach for helping kids with autism be more normal. It's basically the star on the chart method that many parents use with little kids to reward good behavior, like cleaning their room and playing nicely with siblings. It's just taken to an extreme level. When Ian is at school, aides monitor his behavior at all times. They make notes on a chart and later make graphs that chart his progress over months. They measure whether or not he manages frustration and OCD tics.
If he does a good job, he comes home with four green lights and then is given play coins, which he can exchange for prizes at the end of the week. If he does a bad job, then it's red lights and no coins. He's been doing a good job. He hasn't gotten a red light in months.
ABA therapy is very controversial in the autism community. Some think that kids should not be treated like dogs and that this method doesn't do a good job at treating the cause of the frustration. Others love it. I think it is less useful with higher functioning kids, but we go along with it, because there aren't good alternative programs around here.
This training meeting is supposed to teach us new ways to use this model at home. The trouble is that I'm exhausted. Ian is turning ten next week and we've been managing his autism for eight years. Two years of those eight were spent constantly talking to him, so he would learn how to talk. The thought of setting up a new behavior chart at home makes me want to vomit.
His speech also improved dramatically. He can carry on a conversation about the Lorax. He can tell me what happened at school. He can tell me how he's feeling. He and his brother jabber on and on about shows on Cartoon Network. It took a lot of work to get him to this point, but he's doing great. He still needs a lot of work filling in the weird gaps in his knowledge and vocabulary. I hired a babysitter to come here on Saturday mornings to read and talk about picture books with him, so that we can fill in these weird knowledge holes. This Saturday, she talked to him about Eskimos and igloos.
Ian is a success story. We have reprogrammed him. But it has taken an enormous toll on me. I should be doing more than I am right now, but I just can't. I barely have enough energy to check his homework at night. I should be finding new after school programs for him and I'm not.
It is also costly for the school district, which has to hire the staff to keep track of ABA data and provide him with speech therapy. Most school districts would not pay for this. Even this fancy school district could be doing more to help me out in the after school hours, but they won't.
Last Saturday, we went to a party in town and I talked with my friend, Eliza, about her amazing work at a charter school in Newark. This charter school is one of those programs that takes kids from a poor, inner city environment and reprograms them to succeed in school. She works six days a week reprogramming the kids. The teachers work so intensely with the kids, because they have to not only teach math and social studies, but they also have to teach the values of hardwork and discipline. She said they have to provide all the stuff that middle class families routinely give their kids.
Again, this is costly. The teachers at this charter school work very long hours and are motivated by an unusual commitment. Few people could do what Eliza does. This model could not be scaled up and replicated easily.
So, reprogramming works. It can make autistic kids more normal. It can give poor kids the tools to succeed in school and in the work world. But are we willing to pay for it?
Apt. 11d 
We have a son who is a high functioning Aspie and we struggle with these issues as well. Part of my conflict has to do with the fact that:
1. I sometimes verge on feeling like we’re attempting to make our child into something else — someone other than who God made him to be, with all his unique quirks, gifts and abilities. I’m really uncomfortable with the idea that we’re trying to make him “normal”.
2. As kids get older, particularly if they’re smart, they can figure out what you’re up to. THus, I worry that even if we’re not telling our child ‘we want you to be different’, they’re going to pick up on the fact that mom and dad think there’s something wrong with them and want them to be different.
We’re at the stage with a high school aged kid where we are beginning to talk about things like “If you want to get a job someday, you have to be able to code-switch, to be able to use different types of language when you talk to different people. You can’t say ‘yo, dude’ to your boss.” But I draw the line at forcing our kids to adopt “normal” interests — forcing them to ask other kids about how the soccer game went, when the other kids are never required to ask how the Lego championships went, for example. (Of course, even now I struggle with this as an adult — Why should I HAVE to pretend to be interested in your Disney cruise — when you are not required to be interested in my latest journal article?)
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He can tell me what happened at school. He can tell me how he’s feeling.
After about 13 or so, I always answered those with “Nothing” and “Fine.”
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MH,
You would have loved being put on ABA.
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Something I haven’t written about on my blog is that I’m dealing with a depressed teen at the moment that is requiring the kind of parental intervention that I know you’ve dealt with for years. I actually thought about you the other day as I was sitting with my son, reading the Iliad with him just so he *would* read it, and so he wouldn’t feel alone. I thought how this is the kind of thing that kids with all kinds of disabilities deal with forever. It takes a toll. One needs to attend to one’s own feelings and needs, but sometimes you have to postpone them.
I agree that schools and society should do more. I’ve tried to find alternative school for my son. It doesn’t just pop off the screen using a Google search. When I talk to school counselors, they don’t have ready answers either. I have to tell you that my son has bonded with a couple of mainstreamed aspie and autistic kids. He feels a connection to them in that, as he put it, they see the world differently, and he likes that.
I think we should all want all our kids to succeed and that we should invest the resources in making that happen. What I’m seeing right now is a single formula–the go to a good school formula–that just doesn’t work for all kids. But schools don’t always have the money or foresight to plan for alternatives. Actually, I guess there are 2 alternatives I see at Geeky Boy’s school–the academically successful and the “got pregnant at 16” or “going to work at the auto body/beauty shop” track. There’s not much in between, though that’s probably where most kids really are. And if you fall way outside of that, forget it. Maybe my perception is skewed by my experience with Geeky Boy, but that’s my sense of things.
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“Why should I HAVE to pretend to be interested in your Disney cruise — when you are not required to be interested in my latest journal article?”
I think the Ms. Manners social convention is that people are supposed to ask you about your interests, in the same way that you are supposed to ask them about their interests (that is, if you know them). But, the assumption is that everyone is cursorily interested in some things (the weather, vacations, . . . ), while other subjects might be of esoteric interest. Note, though, that the socially correct answer to any expression of interest is pro forma (a question about Disneyland cannot include a response with a description of every day and every ride and every meal). Likewise, a question about a journal article (appropriate if you know about, and also an appropriate answer to “what have you been up to?”), is to give bare bones (a journal article was published; you’re excited about the result; one sentence describing the result).
Expressing interest in the other person is always appropriate — the problem with the interaction arises when one person’s interests are so esoteric that it’s difficult for others to know of them or to ask the pro forma questions/receive the pro forma responses (well, and when the person answering the question goes into a level of detail inappropriate for a pro forma answer.
(and, yes, I am aware that there’s some irony in the answer I’m providing to what is largely a hypothetical question in lousia’s response).
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Laura, your son sounds extremely sweet and sensitive. Maybe he would find it fulfilling to work with disabled kids. Jonah volunteers at the local YMCA at a special education swim class and really likes it. Maybe if he found the thing that he was good at, it would help him out.
I know that a number of my readers have had to homeschool their kids recently, because their kids did not fit into the mainstream model. Homeschooling is not workable for everyone (I couldn’t do it.), but if you like, I can open up an open thread for you all to chat.
I think you should call a school advocate. Maybe there is an alternative school in the area that would be better for him or maybe the school should be paying for therapists. Nobody in the school district will tell you about those other options.
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I think you might be asking a number of different questions here — one is what level of general societal resources will be invested in “reprogramming” through taxes and schooling. I think part of the answer to this question lies in whether society gets the benefits from the reprogramming or not (I don’t think that’s the whole answer, ’cause I think that it’s also true that individuals have a rights for them selves and not just for what they contribute to society). Another is what resources must you invest as a family. (and, another is to what extent are you “reprogramming” in all the bad senses of that word, like in Clockwork Orange or the Cultural revolution).
(I agree with you on the parallel between ABA for autism and intensive education for at risk children — and am sometimes frustrated by the legal requirement to provide one but not the other)
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Susan Senator has a thoughtful answer about adjusting her expectations for her son, Nat at Thinking Person’s guide to autism that I quite liked
http://thinkingautismguide.blogspot.com/
I find these articles and discussions interesting because I think a big challenge of parenting is to let your children be who they want to be, and to give them the tools and skills to go there (well, and the moral base to not *want* to be evil and mean and exploitative of others). Parents of children sometimes face the challenge more directly, because molding your child is impossible, but I find it a lesson for me, too.
(Oh, and, this lesson is there in the overweight child discussion, too — the goal is to let your child be healthy, to let them know how they will be perceived, but not to force them to be at the 20% of BMI, rather than the 70%, because they’ll look better in the Vogue photoshoot *you* and not *they* want to do)
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Yeah, no.
I understand that we have to adjust our expectations of our kids when they have certain disabilities. Or even if they don’t have a disabilities. Not all kids are cut out to be a doctor or a lawyer.
But my kid is a much happier person, because we have worked with him in this extreme manner. He is able to communicate and make jokes and can participate in a meaningful way in family life. He can have friends. He can express his needs and not end up screaming at frustration when we can’t read his mind. He can put off playing with the computer until he does his homework. He takes pride in his perfect grades on his spelling tests. He isn’t afraid of regular kids anymore. He is able to approach many of his OCD habits in a logical manner and work through them.
All this hard work by himself, myself, and the school district has provided him with a much better life. Without all this work, he would be in a straight jacket in an institution.
Susan Senator’s son is much more disabled than my son. All the molding in the world won’t get him into Harvard early admission, but she and the school district have done a lot of work to get him to a more functional, happier place.
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Laura — I’m not trying to disagree with you — wanting your child to be happy being who they want to be involves giving them the tools to get there (which, in turn, can involve intensive, even extreme, education).
I think that Senator was trying to say that her son is happiest both because he’s been giving intensive education and because the expectations have been adjusted — not to value “adjustment” over intervention.
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I agree that working with your kid extensively has to help. I think the let the kid be approach only works if you don’t encounter any issues. And most people, I think, will encounter something by the time they hit the teen years. I can’t just let my kid sleep all day because that makes his condition worse, but he won’t get up on his own.
I suspect Ian wouldn’t voluntarily work on his speech–at least at first.
And while I wouldn’t force a career choice on my kids or insist they play a musical instrument (Tiger mom style), I will insist that they do homework, not do drugs or alcohol, balance their academics with other interests, etc. Some kids are going to need parents to force those issues, sometimes just by sitting there with them or enforcing rules that aren’t fun. (Just wait until you have to stay up until midnight waiting for a teen to come home.) Sometimes, as in the weight issue, you have to be a model and not eat Ben & Jerry’s yourself or go for a walk with your kid, etc. These are sacrifices we make as parents. Sometimes making sure you have a healthy, happy child is a hell of a lot of work.
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I understand the exhaustion. I remember semi-surfacing at one point in the mid-2000s and thinking: is this all that I’ll ever be able to do? Will I die with a checklist of issues and behaviours still to be addressed imprinted on my heart?
I feel a bit more in charge of matter these days but, still, seeing the draft IEP come home made some of those fight or flight responses kick in.
We’re back to queries about shoelaces (Autistic Youngest has shoes with velcro or ones that slip on because she can tie knots but it’s just too much damned work to organize those on top of everything else) and could we sit down at home with her this week to ensure she actually watches The Devil Wears Prada for her Careers class and answers the questions on her worksheet?
We do use the ABA methods, a bit informally, to teach skills at home. Right now we’re inculcating more aspects of her self-care regime through a checklist. At least I see the work pay off but it’s knowing that I have to be planning NOW to have a hope of getting the next stage mastered before summer that wears me out a little bit more.
Geekymom? I’m sorry that your son’s depressed and in need of extra support at this time. Someone mentioned volunteering with special needs kids – that can be a great prospect. He might also look into peer mentoring: the girls’ high school offers that option and Eldest volunteered one term in the ASD classroom (when her sister was in mainstream). It taught her a lot, even though she knew a great deal about ASD and it gave her some appreciation of the adult-level responsibilities in the workforce and educational world she’s eventually going to shoulder.
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So, I have to point out, since I keep bringing the tiger mom into things, that the “tiger cub” has a blog.
http://tigersophia.blogspot.com/
and, I have nothing bad to say about the person as she projects on the blog (well, except that I keep thinking she wears skirts that are too short, but, I’m thinking maybe that’s just me). She’s a thoughtful, interesting, self aware person (of course, I’m talking about the words on the blog, and not the person herself, who I do not know).
I like the advice that one of the ways to deal with depression is to look outward to what you can do for others — I’ve heard that described as a therapy, in fact. And, not just because it seems puritanically right in some way (i.e. stop obsessing about yourself and think about those less fortunate than you) but because it seems that one of the effective treatments for depression is for a person to feel useful and valued. And, of course, the withdrawal and introversion that comes with depression exacerbates the ability to feel useful.
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Geekymom, I’m sorry, too. That can’t be easy.
As a mom who had to be over-involved for years (got an ABA program, kept it going, kept the school on track, found outside activities that worked, ad infinitum) I find some belated satisfaction that over time it taught my son that he was *worth* my intensive efforts, that if he was ever struggling, there was help and sustained affection from his family. I hope your son sees that as you sit reading to him and that things look brighter soon.
I kind of hate the term “reprogramming” and get a little defensive when people claim our ABA program “changed” my son. I never felt we altered his nature – we just gave him the skills to be able to express it fully and the chance to participate in the world around him.
As far as paying for it – I don’t know what to say, there’s more funding now for good services than there was before. But it’s hard for people who haven’t been there – other parents, sped directors, the school board – to understand why families need help after hours. That’s a harder sell.
We networked with other parents to find out about programs (sports, social skills groups, Tai Kwon Do)that were friendly to sped kids and spent a ton of time and money to get him there. I am exhausted just thinking about those years. I feel for you, Laura. The toll it took on both parents was incalculable. But – well, so is the reward. Does that help at all?
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Artemisia, your comment made me cry. Thanks for understanding. Yes, I know that all the work has been worthwhile. My kid has a permanent smile on his face and he adores me. What is better than a loving, happy kid? Nothing. 2011 just kicked my ass, and at times, I still struggle to regain my parenting energy.
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Laura/GM, a friend’s daughter attends the Y.A.L.E. school on the Jersey side of Philly. It might be too low-functioning for your son, but I throw it out there. Also, I love love LOVE the idea of his volunteering with special needs children. That’s brilliant, Laura. If you need help trying to figure out how to make it happen, let me know. I bet my friend knows some of the infrastructure that he could fit into.
I’ve been having a tough situation myself. Well, it’s mostly over, but I’m still trying to figure out what the hell happened. Short, over-simplified version, my son got kicked off his DI team 2 weeks before the tournament. But at one point during one of the hellish phone conversations, my co-team manager said, “But Wendy, the other parents don’t know E has Asperger’s.” And I just wanted to scream because how do you ever know what and when to disclose. Damned if you do, damned if you don’t.
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Wendy, thanks so much. I will look into it. I will also see about volunteer opportunities. We are enrolling in a day treatment program starting this week, and one of the things they do is give you resources for lots of things. Will keep you all posted somehow.
Anyone here remember Parent Soup/iVillage? No thing like that exists anymore.
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Laura, I really appreciated this post because I think it relates to what I do, foster parent and now raising a daughter we adopted from foster care. There’s a lot of up-front investment of time and resources on the parental side, and the amount of institutional support varies greatly. I’ve been lucky in that we were able to work really hard and now our daughter won’t need an IEP by the time she’s able to start school, but there are so many kids who start out with different deficits than hers and end up in homes that don’t or can’t or won’t do reprogramming (which If think fairly sums up teaching a child who hasn’t known consistent care how to accept love and learn to trust) and suffer because of it.
We as a culture have been pretty clear that we don’t want to do more for kids in care in terms of providing money and resources, and then a lot comes down on the individual foster/adoptive parents. It’s a hard balance. But your comment about nothing being better than a happy kid really hit me hard. It’s how we (and our happy girl) feel too.
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