Ian’s speech continues to improve. We’ve waited so long for him to talk that every word he says makes us laugh and cry with relief.
He learned a joke from one of us videoes — Where does a duck go to get his haircut? The baa-baa shop. He must have repeated that joke 100 times this week, and each time, he nearly killed himself laughing.
In Ice Age, there’s a scene when a baby goes missing. When we watched the video on Friday, I asked Ian “Where’s the baby?” He loved that sentence and went around repeating it all weekend putting stresses on different words or speeding it up. “Where’s the BABY? Where’sababy? HEY, where’s the baby?” It was like a Stephen King novel.
Helping to buoy our optimism was some recent assessment from outside evaluators. His pediatrician sized him up and said that he may just have a mild case of Sensory Integration Disorder, which in every case that she’s seen has disappeared in elementary school. Ian was on the high end of active. She also said that he was clearly very, very smart.
We hired a private speech therapist, who said that Ian’s speech wasn’t that bad. He had very good articulation. He had shown off his knowledge of foreign languages that he picked up from a video and he actually has a nice French accent. His vocabulary is good. He did all the activities very nicely. She said “remarkable.” Ian’s biggest need is learning how to expand the number of sentences he uses, so that he can tell me what happened at school and play better with others. The boy needs some chit-chatting skills, though he speaks about as well as some of my Midwestern relatives.
Getting this independent confirmation of Ian’s abilities and needs was so important for us, because I hadn’t gotten anything from his school. First they would tell me that he was doing great. I would look at their checklist of his accompishments, and I would ask why he wasn’t doing stuff at school that he did at home. Did this mean that they didn’t know my child very well? No, they responded. It’s because your kid is such a mess. OK, well then maybe the school needs to provide him with more services. No, he’s doing fine.
They refused to provide me with any input about his daily progress in a communication notebook, which is a standard procedure for non-verbal kids.
I’ve asked to be tutored on therapy, so that I can continue efforts at home where he spends most of his day. Every stick of research on special education says that parents must reinforce skills at home. Didn’t happen.
They told me that I shouldn’t be involved in a meeting between the speech therapists, because I wasn’t a “professional.”
Livid.
Should I get the most expensive lawyer I can find and sue the school district into oblivion? How much do I want to do that, after I slash their tires in the parking lot? But I don’t think that they will alter their behavior. Their condescending attitude towards parents and their do-the-minumum attitude will never change. I’ve decided to regard the morning as cheap childcare and spend the lawyer money on good therapy in the afternoon.
This is one of the prices of buying a home in a working class town. The school system has an excellent reputation, but I’m not impressed. The parents haven’t demanded access to the school. Without parental involvement, the school will always be second rate. The pushy parents in the wealthy neighborhoods do make a difference.
Apt. 11d 
Workers of the System suck.
(Biased statement. Sorry to all those Workers of the System that don’t suck, that actually think about the people they’re serving, heck..that actually think!)
I’m glad you were able to get some affirmation and encouragement.
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Laura,
It’s great that Ian is making so much progress, but terrible that you’ve been getting so much DMV attitude. From what I’ve heard from you and others, it seems like it’s fight, fight, fight all the way to get services. Has any of this affected your attitude towards school choice, vouchers, etc.? Also, have you considered writing up your experiences for a newspaper, magazine, etc.? Heaven knows whatever you wrote would be a vast improvement over those dopey and narcissistic first-person pieces the NYT is always printing.
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Laura:
I have lots of personal political opinons on the situation of public schools (and, as someone who is related to a dedicated public school teacher, statements like “Workers of the System suck” twist my heart).
But, your post here is not political, it’s personal, and if you haven’t come across this site, you should really look there:
http://lizditz.typepad.com/
There’s a huge amount of great information, including links to development of IEPs that shows people how to work with the school system to obtain appropriate help for their children; I particularly like ths site because I think it’s informative without being inflammatory. I think a policy wonk like you would appreciate it, and you might also find it personally useful.
bj
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Way to go, Ian! (picture me jumping up and down). Hey, I just did a round-up post on IEP season
— and I completely missed the class angle. Thanks for bringing it to light. Of course, I have no way of knowing just from a cursory reading of peoples’ blogs, that I found by searching for IEP, the SES status of their school districts.
Peggy Lou Morgan, whose son has multiple disabilities, refers to what you experienced as “stupid parent syndrome” in her book Parenting Your Complex Child ISBN 10814473164.
The book “Quirky Kids” (by two pediatricians) really helpful. ISBN 0345451430.
Mel Levine, in A Mind at a Time ISBN 0743202228 has some language development suggestions — but mostly for older kids. ( I highly recommend his approach, BTW).
I wonder if the private speech therapist can help you develop some games and drills to do at home.
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I know Liz’s blog very well. She’s also nice enough to comment her from time to time.
Liz’s blog and other web resources, including some very helpful moms on a listserv that I belong to, have helped me learn what my rights are. I’m quite certain that I have excellent grounds to sue the school, but I’m not sure it will be worth the aggrevation. Right now, I’m way too angry. I’m not sure that I want a prolonged lawsuit eat me up.
And this is mostly a personal post. Just venting this morning. But will it have an impact on my politics? Hopefully as my kids go through the school system, I will have enough examples of excellent teachers and administrators to counter what I have experienced this year.
I’m waiting for Harry at Crooked Timber to write another post on bureaucracy. And then I’m going to follow up with my own and try to bring in this education stuff as well.
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Thanks for the compliment! I just thought of another class/education related issue having to do with Special Education (actually the IEP process). Parents have to have impressive knowledge management and document managment skills to just to level the playing field. A parent without those skills just isn’t likely to get all the resources her child needs to succeed.
One mom I know with two dyslexic kids in public school has about 4 linear feet of binders, just for her kids’ records and IEP hearings. The documentation requirements are just stunning.
Laura, if you don’t have it already, order Nolo Press’s IEP Guide: Learning Disabilities ISBN 1413304222–I am pretty sure that speech delay comes under LD. They also have a generalized one for other reasons to be in Special Education (ie, physical handicaps, MR, emotional disturbance) The Complete IEP Guide: How to Advocate for Your Special Ed Child ISBN: 1-4133-0199-1
BTW, in some districts services for the “very very bright” (gifted and talented education, GATE) comes under the special education heading.
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How much of the treatment comes from a desire to limit usage/keep costs down? And where is Jane Galt when you need her?
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Did you see the article in today’s WaPo about special ed in DC?
Basically, the schools don’t have the resources to hire appropriate special ed teachers because they are paying private school tuition for special ed students who can’t get appropriate education in the public schools because the schools can’t afford to hire appropriate teachers because they are paying private school tuition (continue loop ad infinitum).
http://www.washingtonpost.com/wp-dyn/content/article/2006/06/04/AR2006060400973_pf.html
As to AmyP’s point: I definitely got the sense from talking with friends who have a child who needs extra services (and will hopefully be mainstreamed this year) that at least some of the pushback comes from a need to keep costs down. Special ed is expensive. I suppose you could argue that the parents of children who need help the most are the most likely to fight hard for help, yet in the real world, it does seem to be those who believe that they are supposed to fight and that they might actually win who actually fight. (I hope that convoluted sentence makes sense.)
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Wow the WashPost article is scary. It’s a prime example of the robin hood scheme I fear our public schools are becoming, stealing from the poor to give to the needy. I’m embroiled (in a non-personal way) in the mess the school closures in our system are causing, and that’s the conclusion I’m reaching there. First, they try to steal from the rich to give a bit to the poor. The rich complain, so then they steel from the middle to give to the poor. Then, the middle complains, so they steal from the poor to give to the poor.
I don’t want to hijack Laura’s thread (actually, I worry we’ve already done that), so I’m going to stay mum to wait for the new post.
bj
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Thanks, Liz. I’ve got the quirky kids book, but it doesn’t really apply to Ian, because he’s not autistic. Still, it’s an excellent read.
Thanks for the IEP info. I know I have a fairly strong case for demanding better services from the school, but I think that even if I dump a ton of money into a lawyer and give myself an ulcer, I’m not going to get what I want. I want a teacher who gets my kid and who treats me with respect. I can’t force his teacher to become more acquainted with the latest literature and to develop a pleasant disposition. It has been easier to find better services outside the school.
Luckily, we have the luxury to do this. Ian’s disabilities are relatively minor. 45 minutes of speech therapy outside of school is all we really need. If we needed more services, I would have to go the lawyer route. Lucky again, that we can afford that option.
Special education doesn’t have to be as expensive as it is. There is so much illogic in the system. For example, special education shouldn’t be a town based program. In Ian little class, every kid has his own disability from ADHD to dwarfism. Ian is the only child who is gifted and disabled at the same time. His teacher has no idea how to use his gifts to help him talk. She refused to use books, his area of expertise, to help him talk. In fact, I don’t even think she does anything to help him talk at all. I’m getting mad again.
It would be much cheaper, if special education was a county based program. Ian should be in a class with other kids like himself and resources could be pooled to provide the best education for the kids.
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“and, as someone who is related to a dedicated public school teacher, statements like “Workers of the System suck” twist my heart”
Aaah, the perils of posting comments before the second cup of coffee. 😛 Sorry, bj, did not mean to offend. Had a recent odious experience and am frustrated and overwhelmed with the System. I’m sure as many frustrating people there are as many wonderful, dedicated people.
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There’s also a big difference between The System and individual dedicated teachers.
I was reading your last post, Jeannette, on your good and bad experiences with early intervention. I’m sorry to say that I found EI much more responsive than the school system. EI set me up with a speech therapist in 3 months. The school system took 6 months. However, the speech therapist that we got from EI was awful. I only found out later that every other parent got rid of her immediately, but I kept her around because I thought that it was normal for kids to scream at the top of their lungs for therapy. I think she set him back in a major way.
Have you tried the Signing Times videoes yet? Ian still loves them and we keep buying more.
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Laura, a lawsuit is worth it if you (a) need to recoup a subtantial amount of money or (b) need to sue in order to obtain better services for your son on a prospective basis. It is not worth it if your goals are to get them to admit a mistake, to provide emotional catharsis or to change the way they deal with parents. For those three aims, you’re better off going to your local house of worship. Better for the soul, and divine intervention is the only power that can get a school bureaucracy to admit a mistake or change its ways.
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A theory on why obtaining special ed services is so difficult. Part of it is the $$ – especially for severe disabilities like autism – but I think the interplay of IDEA and the school system is also a cause. IDEA grants an entitlement to the student (for a “free and appropriate public education”) that schools must accomodate. Functionally, it grants the student’s family power over the student’s educational goals and the money involved thereto, to an extent that parents do not (formally) have in a “normal” context. Part of the resistance school systems put up is, I believe, a reluctance to cede the power and autonomy to which they are accustomed. (Think of Laura’s posts on how utterly unresponsive the school was to requests for information, requests that weren’t about the money.)
Boys and girls, can you spell “vouchers?”
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Laura,
You know, often you don’t have to go to court to get what you want, if you aren’t demanding too much. You just have to LOOK like you are READY to go to court.
When they see the threat, they back down.
Brinksmanship.
But no matter how you slice it, the best speech therapist at the school is not going to be as good as an excellent private therapist. You get what you pay for, unfortunately.
My analogy is always food — yes, you can’t argue that your kid is starving when he gets fed at McDonald’s (speech therapy in school)
But you can’t compare that to a gourmet meal at a fine restaurant (good private therapy) and say it’s the same thing.
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We love Signing Time!! It’s the only thing Ellis watches. We recently found them on tv. (I think an NJ? public station: wybe. Mondays at 4 or 4.30)
I guess I was naive and thought everybody wants to be helpful since they’re in service jobs. 😛
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re: you get what you pay for. But I’m paying the school district, too, with my taxes. The school district isn’t doing me a big favor. I’m paying for services. I want services.
I could sue the school system to provide us with a one-on-one aide for him. They say that there is plenty of help in the classroom, yet no one can write one sentence in a communication book? They went the whole school year assuming that he couldn’t do simple things like sort shapes, when he’s been doing that in his sleep for two years. Maybe a one-on-one aide would be able to keep a better eye on him. I would really like to sue to have him put in a private school, but I worry that it will be hard to find a school that deals with kids who are super smart and disabled at the same time. I also want to sue them to make them do a better job, but legal action doesn’t boost one’s IQ.
Dr. Manhattan writes: “Part of the resistance school systems put up is, I believe, a reluctance to cede the power and autonomy to which they are accustomed. (Think of Laura’s posts on how utterly unresponsive the school was to requests for information, requests that weren’t about the money.)”
yes. yes. yes. yes.
“Boys and girls, can you spell “vouchers?”” heh. no comment at this moment.
Jeannette, we bought the signing times videoes from their website.
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Regarding “you get what you pay for.” I was referring to the quality of the speech therapist, not the quantity of services. By law, they have to give you a speech therapist. But not a GOOD one.
That’s why I made the food analogy. They won’t starve you, but they won’t give you the best tasting or most nutritious meal.
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Yeah, but I’m paying a lot in school taxes. I should get the best therapist in the state for what we’re paying. But I know that you’re right and am paying others a lot of money to supplement.
I just came back from a meeting today with the school and they actually told me that I should “be a mom,” relax, trust the professionals, and go get a manicure. THEY TOLD ME TO GO GET A MANICURE. Would they ever say that to a man? I gave them a long speech about how I was a professional, a mom, and a professional mom and cited all the literature that showed the parental involvement made a difference. In the fall, I’m going to make them meet with me every month to provide me with feedback and tips/tricks.
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I would have run screaming from the room. And given them my lawyer’s phone number. But that’s just me. (I don’t get manicures.)
Part of the reason I think this is about power and authority is that the schools often don’t do things with an eye towards the bottom line. With the progress Ian has already made, you’d think they could be focused on one last push to maybe get him out of the special ed-track and into the regular system, where he can be safely ignored just like the other kids…(sorry, couldn’t resist that one) – or at least get to the point where they don’t have to deal with you bothering them regularly. But no. They define their self-interest differently.
Mrs. Coulter cited an interesting Washington Post story above. I don’t know enough about the DC school system to comment (other than that special ed is the least of its problems), but here in NYC, I am reliably assured that for an autistic kid, a placement in a good private school in NJ (with 1:1 instruction throughout the day) costs the city LESS money than it would spend if the same kid was in a NYC public school program for autistic children, with a much higher teacher-student ratio (thank you, NYC union-driven educational cost structure). Yet they still fight.
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I’ve been reading everyone’s cri de coeur and all I can think is how much I am blessed. It’s worth dealing with two school districts at the same time to get the quality public education I am getting for both my gifted and special-needs kids.
Seriously, when you can’t stand it any more and you want to live somewhere where the public school system does what it’s supposed to for special-needs kids, move to west St. Louis County.
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Laura wrote:
“In Ian[‘s] little class, every kid has his own disability from ADHD to dwarfism. Ian is the only child who is gifted and disabled at the same time. … It would be much cheaper, if special education was a county based program. Ian should be in a class with other kids like himself and resources could be pooled to provide the best education for the kids.”
Well, even though it’s not a county-based program, the town could decide that it doesn’t have an appropriate program for Ian and have him placed in another town’s program that is appropriate (assuming that other program has a space). Yes, it would cost money, but presumably not much more than it’s spending on him now. It happens all the time for autistic kids – districts may agree to place a kid in another district’s public school program (or even a private school) if everyone agrees that it’s appropriate. In other words, you can often reduce inefficiencies even under the current system.
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Get an advocate. I have a special ed child. I was in the same boat you are now in. The school tested him and found no problem. I knew there was one. I did a lot of research and found a
therapy practice that not only did the testing but also developed an independent IEP. The pychologist came with me to the IEP meetings and called bullshit on a lot of the stuff that the school was selling me. We were able to get her IEP plan implemented and a child that was getting D-‘s is now a solid B/C student. Not without really hard work on his and my end but ultimately he is succeeding. I don’t know what state you are in but the problem that I had was that it always seemed to me to be 7 professionals against the (nonprofessional) mom. I am a professional as well, just not in education. Sometimes you need someone who can just tell them what they are trying to sell is just bullshit. The IEP is all about results. The schools just want to push it off as a “lazy” child” or “crazy parent”.
and to the person who suggested school voucher may be the answer…consider this…In a public school, parents have the right to make demands of the system, file complaints, and have their concerns addressed. A private school is exactly that, private, and under no obligation to accommodate individual situations. A good NY Times article on a public school program that has made dramatic improvements across the socio economic divide. http://tinyurl.com/rot86
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I am very empathetic, because I have been on both sides of this table. I’ve represented parents in IDEA cases, but I’ve also been a teacher created IEPs. Schools are in a difficult situation here. Although your complaints sound legitimate, schools face a lot of resistance from parents who have unrealistic expectations, are trying to “game” the school district to pay for private schools, or who are using special education to meet some other motivation.
Parents and schools have a different view of what can be accomplished with the limited resources school districts have. Special education students are very very expensive to serve. There is significant resentment from the rest of the school district establishment for the tremendous costs of providing special education services. Thus, special education teachers are pressured from all sides: parents who have sometimes unrealistic expectations and administrators who believe your special education is black-hole of money.
Now, it sounds like the school is being pretty dismissive of your concerns. Have you spoken to the head of the special education for the school district? Were they as dismissive?
While not taking the teacher’s side, let me also give you another perspective on her reaction. The most disempowering job I ever had was as a teacher. EVERYONE, from my principal to my parents to my kids, belived they were smarter than me and knew how to do my job better. Public schools are the constant recipient of every fad, new theory, and government mandate possible.
So the teacher may be a bit over her head. When you offer these suggestions or ask all these questions, they come from a “I have a Ph.D. and I know more than you do” level, even if that’s not what you intended. When you add the “I’m a professional with a Ph.D” to “my kid is gifted and needs something specific and special,” I could see why the teacher gets so defensive. She must feel there’s probably no way she can please you.
Admittedly, that’s her issue, not yours. But hopefully this gives a little perspective. Everyone wants respect, just like you do. Acknowledging that they may have some understanding you don’t have, but you are just trying to do you best for your kid, may help.
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Michael — My main gripe hasn’t been that they should be doing something pedagogically that they’re not. My main gripe is that I have no clue what is going on and that I need more information. No information goes out. No coordination with home and family of therapy. No information about how he’s functioning in a group setting. No information about what happens on a daily basis. No discussion about what I’ve found to work at home.
I appreciate the teacher perspective, Michael. I taught special education in the South Bronx for two years. My sister and SILs are teachers. Special education teachers in suburban school districts may be under very tight scrutiny. My PhD might be intimidating. But I just can’t care. I have to do the right thing for my kid. I want him to start kindergarten next year on time. I want him as far from the teacher as I can get him. I’m not convinced that being a push over will help him at all.
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Catherine Johnson of Kitchen Table Math has a cute black t-shirt with a white helicopter graphic that says “Helicopter Parent.” The shirt is from Cafe Press, and it’s all I can do to keep myself from buying one from me, and one for every mom I know, including Laura. Our family isn’t in the public school system yet (our big girl goes to pre-K in the fall), but I can already see that a whole lot is demanded of parents these days. You’ve got to be involved, but not overinvolved–and the difference between the two is pretty much in the eye of the beholder.
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Fair enough, although I’m not sayin you should be a push-over. What has been the reaction from the administration when you’ve raised your concern?
Also, Is it possible that she’s been reading your blog?
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Thanks. Yeah, I think that going higher up the food chain would be even less useful than getting legal representation. I think I’m closing the chapter on this book, giving up, and hiring lots of outside professionals to provide us with guidance.
This stand off between parents and teachers is an inevitable consequence of how special education is set up in this country. Parents have to bargain for services. Administrators hold back information and even lie, in order to reduce the demands of the parents, which they always see as excessive. Like any good poker game, they keep a tight lid on information about the child in order to better control the game. It just doesn’t work until the parent is so whipped that they passively agree to everything.
I’m sure that the school doesn’t know about my blog. I don’t tell anybody about it. And back to the point about my PhD intimidating educators. I don’t tell anybody in town that I’m a PhD, because it might intimidate them. Nobody asks what I did before I started staying at home. If it comes up that I’m going back to work, I just vaguely mention that I’ll be working at so and so college. They assume that I’m a secretary.
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Unless you don’t use your real name, anyone who googled your name would land at your blog pretty quickly. And these days, who doesn’t Google people they come in contact with?
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Hmmm…Wouldn’t one put oneself out a bit more for a parent who is armed with a blog?
There are parent-bloggers who aren’t nearly as discreet and conflict-averse as Laura. Just as an example, I would live in fear if I worked at Irvington Middle School and knew that any misstep might earn me a write-up at kitchentable.net, where real names of school personnel do crop up now and then.
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Sorry! That’s kitchentablemath.net.
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Dr. Manhattan: it is my impression that the DC school district is, while not necessarily the worst, quite possibly the most dysfunctional school system in the entire country (just as DC itself is a shockingly dysfunctional city). According to the article, one of the reasons why costs are spiraling out of control is that, unlike the suburban districts, DC doesn’t place any cap on what the private schools can charge for tuition. It’s just the latest in a series of shocking stories about gross administrative mismanagement in DC schools.
But it does sound like the pushback Laura’s getting is about power and control rather than money.
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In addition, it seems like the DC schools have very little idea how many kids they are sending to private schools, and how much they are paying. In such an environment, waste is inevitable.
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If you do you the intercession route ( be it IEP or something else) it’s not necessary to have a professional represent you, believe (based on personal experience) it may work better if you have professional coach you and then armed with knowledge go to the IEP.
However, that being said, it’s worth it to push. We are in a well off school district with the highest test scores in S. Cal and an extremely committed and beyond caring principal. It still took us some time to understand how to get the best from the system and we still needed a tranlator to get us there.
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