This Sounds So Sadly Familiar
An Oklahoma judge has ruled in favor of the Cashion School District against a family seeking appropriate educational services for their twin autistic daughters, 7-year-old Kaitlyn and Kayleigh Berry. From the June 21st Hays Daily News:
“Obviously, I’m very pleased with the outcome,” said Cashion Superintendent Todd Garrison.
Barry wrote in an e-mail Friday to The Oklahoman that he will review the decision and pertinent case law before deciding his next step. The family has the option to appeal the decision to a second hearing officer from the Oklahoma Special Education Resolution Center, which handles due process complaints for the state Education Department. Any party can appeal to district or federal court after that.
Barry’s daughters were diagnosed with autism in 2004.
That year, the Barrys started working with the Cashion School District to provide in-home special education and related services, such as occupational therapy.
However, Barry said, the school district did not provide what his daughters needed.
My 11-year-old son Charlie is, happily and finally, in a school program that he likes, if not loves—he only had three days of Extended School Year last week, and asked on Friday and Saturday nights to get his backpack ready: Because, y’know, there have to be five days of school, and how can there have only been three?. Getting Charlie into this program has been the main focus, struggle, and goal of my husband Jim’s and my life for the past three years (which is how long I’ve been blogging—I just realized right now that this past Tuesday, June 17th, was my third bloggiversary—time flies when you’re posting, raising Charlie, and doing various other things). We gave up two jobs (Jim’s was a tenured, full professor, endowed chair position at a large Midwestern university; mine was tenure-track) and financial security to move back to New Jersey in the summer of 2001, so that Charlie could be in a public school autism program that used ABA here and knew what it was doing.
The better part of 2005—the year I started blogging—was consumed with a back-and-forth struggle with our then-school district, in a town close enough to New York that the night sky to the east glows with the city’s lights. Charlie, who had been in intensive Early Intervention and had the full range of speech and occupational therapy, and who had done a number of widely-touted biomedical interventions (including the special diet), was struggling. I taught college classes with my eyes on my cell phone—I knew when it was the school nurse or the principal calling by their numbers—and drove with that little piece of metal and circuitry in my lap or clutched in my right hand. I got calls almost every day about Charlie “bumping his head” (a euphemism from the school) and then found myself in long calls with the autism consultant we’d found (good thing New Jersey had yet to pass its “no driving while talking on the cell phone” law—I would have been a repeat offender). There were lots more phone calls (Jim and the special ed director; Jim and the lawyer) and meeting with various school personnel (including Charlie’s teacher who was in her 20s and who put everything into her work, and who had a lot of her own to contend with; there were days she met Charlie with her own eyes red and swollen; I regret that we were never able to tell her how much we appreciated her).
In the fall of 2005 we took Charlie out of school and he never went to a classroom in that town again. My mother flew out to live with us while Charlie was home and we, through some true luck, got him into a private autism school. He loved it—but it closed in June of 2006 and Jim and I, seeing him start to slide into deeper and deeper anxiety, moved us into Jim’s parent’s house, into the family room behind the laundry room and the cluttered garage. We lived there last year and watched Charlie (this is the word, though a bit sappy) blossom. Not only did he love school, he was very happy to be living in his grandparents’ house, which has a huge yard with pine trees and grass and a long driveway. But after a year, Jim and I needed to move our family into our own place—my in-laws have many of their health and other concerns—actually, we might have moved sooner, but Charlie loved living there so much.
I don’t mean to get too wistful—the efforts of the Barrys in Oklahoma to do what they have to do for their daughters struck a note in me tonight. I’ve been reading through old blog entries from my first two blogs, My Son Has Autism and Autismland, which were daily journals of our life with Charlie, as part of working on my book, and there’s a lot of memories and feelings in those entries. I often did not know when things like head-banging or throwing plates of food would end and I wondered about helmets, residential placements, and huge doses of medication. I would never have dared to fly across the country solo with Charlie.
Finding the right school is not “the answer” to everything. But with the school piece settled, Charlie has become at ease and is best able to learn, and Jim and I have been able to feel a lot more “peaceful easy-feeling,” too, and to attend to too many things that got back-burnered when finding a school for Charlie was the only thing we thought about morning, noon, night, and in fretful dreams.
The Cashion School District may feel that they’re doing “everything they can” to provide for Kaitlyn and Kayleigh Barry. All I can say is “yeah, right”—our old school district said that to us plenty, pulled a long face, and talked about “out of district” alternatives.
Yeah, right.
Tags: ada, asd, asperger, autism, autism blog, bloggiversary, disabilities blog, disability, Family, family blog, idea, New Jersey, Parenting, pdd-nos, schoolsRelated Stories
POSTED IN: Charlisms, Education, Family, Legal Issues, New Jersey
22 opinions for This Sounds So Sadly Familiar
navi
Jun 22, 2008 at 7:12 am
I read posts like this and wonder if I’m lucky or clueless.
My son is in a program for autistic kids through our intermediate school district. His original home school, which was at a loss for what to do with him (though they didn’t admit it - not eliminating his one on one aide’s position would have helped immensely at the time), recommended it (I loved the language therapist at his old school, but felt he needed more - ppi was only 2.5 hrs, and the first year of esy, which had a 4 hr day, he’d improved over the summer, instead of regressing a bit - which is what now happens due to the fact that he now drops from 830-3:10 5 days to 8:30-12:30 4 days when going to ESY…
We’ve seen progress, so we’ve been happy with the program he’s in, though sometimes he doesn’t want to go, other times he slips right in and gets in the groove…
I had one parent tell me via email, when we were moving and were afraid he’d have to switch programs, and were looking for information, that she didn’t like the classroom he was in, but loved the classroom for older students through the same program. She never told us WHY she didn’t like it, though, even after we asked. Ultimately, we played the safe route and bought a house in the district that his program was actually housed in, rather than risking moving to a district that might place him elsewhere.
I’m a little unhappy with some things - my nonverbal son rides a crowded typical school bus, rather than the special ed buses with only a handful of children - I worry that the bus driver is not capable of keeping an eye on him (confirmed when a portion of his harness came loose from the seat - the district got a nasty phone call after that one) and that her instructing the other kids to please sit down at every single stop can be stressful for him. As my oldest goes to a public Montessori, I’ve been quite spoiled by the way they speak to the children - but these are things that have very little to do with the program he is in, and are fairly trivial concerns.
I often wonder - should I be doing more? Getting more evaluation/therapy than what the school provides (he gets language and occupational and sensory therapy at school)? I really don’t know. I know he is progressing, albeit very slowly. I know he is progressing more than he would if we just kept him home, but still I wonder if should I be doing more.
sharon
Jun 22, 2008 at 7:18 am
Kudos to you and Jim for sacrificing so much for your son.
I sometimes regret not asking/demanding more but I know I don’t have the strength and resources to fight it out.
farmwifetwo
Jun 22, 2008 at 7:52 am
I think the “right school” is EVERYTHING for our children. I am shocked daily about the effort being put in to teach my son. This school does not have the reputation to do, what they are doing, but they are doing it. Maybe b/c it’s obvious he’s happy and learning as fast as they can teach him… I don’t know… but as his next yrs teacher said at Fri’s IEP mtg “It takes a village to raise a child”.
A story. End of May they had their primary concert. Little boys friends dragged him here and there across the stage and then at the end, being cats they curled on the floor. They forgot to pull him down as well. He stood there, silent. All 8 grades were in the gym - I went in the afternoon to see it - it was SILENT and they waited to see what he’d do. He started to clap and cheer “YAY!!!!”, there was a short laugh and then all the kids clapped and cheered with him not at him.
That’s inclusion done properly.
S.
kal
Jun 22, 2008 at 9:41 am
Three years… happy blogiversary! I am grateful for the time, love and energy you put into keeping us all informed. Reading about your experiences with Charlie AND what’s happening in our greater autism community is a regular, important part of my day.
jonathan
Jun 22, 2008 at 10:43 am
So, Kristina, are you saying that school districts have no right to defend themselves from lawsuits brought about by parents? I read your post and the article that you linked and from those I don’t understand the details, but I think you have to accept the possibility the parents in their suit may have been asking for things they were not legally entitled to and there was a good reason legally (even if you don’t agree with the law) that the parents did not prevail.
For the third time now, school distrcts are not legally required to do “everything they can for a child” As I told you two times before in the Rowley case fair and appropriate does not mean best. You don’t seem to understand that concept but it is the law whether you like it or not.
The problem again is parents of developmentally disabled children have unrealistic expectations of what can be done for their kids IEP=idiotic expectations program
Karen
Jun 22, 2008 at 11:23 am
Congrats on three years, Kristina! Thanks for all you have done to help me understand more about my son.
Stories like this one (and what you and Jim have gone through for Charlie) make me so grateful that my son is getting *great* (I don’t know what “the best” would look like but I do know that what we’ve got is very good) services and education through our school district and is thriving.
In my experience, parents of special needs kids like myself do not have unrealistic expectations — we simply want our kids to be able to learn, thrive, and feel like part of the community. It does happen sometimes and in some places…parents who feel that their child needs different or more services go to bat for that; that’s what parents do. I do not see how wanting to create an environment where your child can learn is unrealistic, jonathan.
jonathan
Jun 22, 2008 at 11:29 am
asking for ABA which claims to cure nearly 50% of children with autism is unrealistic. Asking for every service under the sun, shadows, speech therapy, everything else and expecting that this will make a difference in a child’s life and will make the difference between him being able to make a living and being a productive member of society, which was the stated purpose of enacting the IDEA in 1975 is not realistic. There is nothing wrong for parents doing all they can for their kids, but many of the services and treatments and therapies that people fight for under the IDEA and expecting anything near complete normal functioning, them being able to find a girlfriend and make a living is not realistic, no.
Kristina Chew, PhD
Jun 22, 2008 at 11:54 am
@jonathan, sure school districts have the right to defend themselves and parents and their kids have the right to demand what they need! Bring ‘em on……..
Cliff
Jun 22, 2008 at 1:03 pm
“For the third time now, school distrcts are not legally required to do “everything they can for a child” As I told you two times before in the Rowley case fair and appropriate does not mean best. You don’t seem to understand that concept but it is the law whether you like it or not.”
Again, and especially with something as ambiguous as this, don’t assume that there aren’t other interpretations of the legal term.
And, no, it doesn’t mean best, but it in fact implies the expectation of the reasonable possibility for educational growth. That’s not always given in such programs, and well should be.
I’m also not sure how universal your expectations are, so that everyone expects a normal-functioning kid. Of course, that’s a loaded term I hate for a variety of reasons (I mean, “normal-functioning” isn’t a fantastic goal just by concept), but I’m simply not seeing those assumptions everywhere.
And do you think Kristina honestly thought that school districts didn’t have a legal right to defend themselves? And don’t you notice things like “cleverly” redressing the IEP acronym actually will do anything but turn people off?
Cliff
Bonnie Sayers
Jun 22, 2008 at 1:07 pm
Three years goes by quickly. My third year writing at BellaOnline is on the 25th of June. I hit eight years writing online in mid Jan since that is when I started at epinions.com
I was reading an email yesterday at one of my yahoo groups and this parent was asking for help on how to teach her child. For 1.5 years she has been doing biomedical stuff and thought her child would recover and now that the time has past she is lost and wants to know where to start? I was really surprised that this parent did not know how to relate to her child or anything about autism as the focus was on recovery and biomedical only and not teaching, etc. Very sad.
Bad mommy
Jun 22, 2008 at 2:29 pm
Jonathon seems like a troll. His comments on this and other sites are needlessly combative and simplistic. Oh - and they don’t seem to add much of substance to the discussion. But at the risk of feeding the trolls, here goes.
I don’t think that parents expect their kid’s life to resemble a neurotypical life - nor do I suspect that some autistics would want a life like that. How exactly do you figure that getting a girlfriend and a job have anything to do with getting an appropriate and effective education? What makes you think that any given kid WANTS a girlfriend, or any of those other things? The goal here is to maximize each kid’s potential to do what they want. Depending on the child, they have excellent potential to contribute to society in many ways that are apparently outside of your narrow definition of what that means.
My kid is in a very inclusive environment. He is literally operating at least one grade level above his own in school. He needs added direction, structure, etc.: but let me guarantee you, he is more than capable of hanging with the smartest child in his mainstreamed class. I’m not sure that he’ll want a girlfriend, but he certainly has an entire harem of older girls at his school who take great pride in helping him out, and enjoy him. Normally, he walks around with a fifth grade girl on each hand. Those girls, along with a lot of other kids in his school, are learning to value him for the wonderful (different) person that he is, and are learning to deal with difference with warmth and respect. They feel better for being helpful and responsible in their community at school. Everybody wins.
The services that he gets are a little minimal - but the response and flexibility when he hits a roadblock are worth a lot more to me. I can get him OT outside of school, but can’t get him a supportive and understanding environment at school any other way. Whether people like Jonathon will ever expect much of my kid, or acknowledge his contributions to society, matters very little. Getting a child an appropriate educational placement, where he or she feels valued and enough obstacles are removed that he or she can learn and grow - that’s the critical part.
And, I might add, is something that all children deserve. And if schools can’t figure out how to teach a large segment of the children walking through their doors (due to dyslexia, ADD, autism, anxiety - you name the issue), then it is critical that they figure out how. And often they fight for reasons that are very, very stupid and have nothing to do with the specific case at hand. If what you care about is your own specific child, and what the district cares about is not letting the nose under the tent for some range of services (regardless of how necessary they might be for this particular kid), you will have a lawsuit. No one expects that to be an efficient way to solve disputes, right? The fact that it comes to that with the frequency with which it does is symptomatic of a problem, alright - but not the one you seem to be suggesting. And some schools elect to spend the money on services for kids, some elect to spend it on lawyers. I’d be surprised if the expenditures are lower in one place versus the other - but I can tell you where the kids are actually learning. Some places need to examine their mandate.
Kristina Chew, PhD
Jun 22, 2008 at 2:35 pm
@navi, I know everyone in our school program is not as happy about it as us; there are some families in the district who home school, and other who have their kids sent to out of district schools. Sometimes I think we’re a bit too “complacent” and I feel we should be asking for, seeking for more. I’ve tried to judge things based on Charlie’s demeanor and responses when we talk about school and these say, things are good, right now.
I’ve heard of some other families who really put everything into the biomedical treatments the first few years and had the same thing happen as Bonnie describes. The children in these cases were in school/educational programs but I guess it was not the most-focused on thing. Wishing you a happy 3 year bloggiversary for writing on BellaOnline!
Being a parent certainly changes one’s perspective about what is needed and I’ve known few parents who did not say they wanted “only the best” for their kids.
Kristina Chew, PhD
Jun 22, 2008 at 2:41 pm
Also have to say, we tried not to hire a lawyer for years and years—always wanted to put all $$$ to where it was most needed, on Charlie’s actual learning; on therapists and teachers. Going a legal route seems hardly a good way to address educational needs; part of being a parent is learning to do what you have to do.
Emily
Jun 22, 2008 at 4:37 pm
Jonathan needs an IEP of his own: Internet Etiquette Plan.
Troll much?
I’ve been doing a lot of work on IDEA and ADA lately. I’m sure that these parents are aware of the rulings as described at Wrightslaw, and I’m sure their attorney is, as well. I’d wait and see where this goes next and what the facts of the case are before drawing any conclusions. This family appears already to have won/settled two complaints with this district, one having been won on appeal. That may well happen in this case, too.
It’s too bad the school district’s superintendent had to sound so satisfied at the “victory.” A little more grace would have been nice, as would some sense that he was representing a “We,” rather than an “I” in his statement. But he’s lost twice and the district appears to be low on funds to fight these battles. I wonder if that lack of funding might also be contributing to whatever the alleged lack of services in this case is.
Hello? We need money for education in this country. Think how much more rare the battles would be if education were fully funded. But that’s another topic.
Autismville
Jun 22, 2008 at 5:07 pm
I believe based on my ownpersonal experience that the vast majority of students with autism are not receiving anything close to FAPE in goold old Oklahoma and Texas …
Our experience in our “Exemplary” Texas School District was completely appalling… MA has been a vast improvement.
Val
Jun 22, 2008 at 5:18 pm
A speech pathologist is actually required under appropriate education. There are things parents feel they are entitled to but aren’t but speech is very much required.
Most schools provide some form of aba but not Lovass because it’s not cost effective and it’s huge study is highly overrated.
A teacher who felt I wasn’t getting enough services spent an hour with me to do an assmeant for my daughter and then went to help me make a simple educational program I could do over the summer.
Yes I have to do all the work in incorporating it into my play based therapy but many parents would love it to be taught by the school to provide some services.
Regan
Jun 22, 2008 at 5:33 pm
Jonathan–you are oversimplifying a situation that is dependent on student, family, staffing, training, district, state and federal funding, and sometimes, court, by reducing it to name calling and value judgement of parents specificly. Cut it out. For you the matter is a rhetorical one on a blog comment; for the students and parents going through the IEPs, the matter has more immediacy and importance. Whether you triumph rhetorically here is probably a matter of indifference to anyone besides the readers, and certainly to the cases themselves.
FWIW–there is such a thing known as benchmarks and monitoring progress. Having gone through the IFSP and IEP process and reviews, that is one means of determining whether services are sufficient and appropriate, or misallocated. Most of the people I know are not asking for the moon and a balloon; they are asking for speech therapy for children who have speech problems, they are asking for academic programs that teach the appropriate skills in a meaningful time frame vs. going through the motions, they are negotiating for approaches that have greater promise to teach a particular child skills than ones that don’t. They are asking for opportunity for inclusion, and in some cases the LRE which is the goal of IDEA. From observation, these are not identical IEPs, and should not be, since the purpose is individualized and specialized. Review and negotiation is always part of the process. In the situation where the federal mandate is underfunded and we are in a situation of sorting through best practices and related training; the problem is that negotiation sometimes is more stressful and contentious than it might be otherwise for any of the parties involved.
The law also allows these safeguards and ability to go to due process. As Emily noted, this family prevailed in one ruling, another in appeal, and may very well appeal this one. The decisions in these local, regional and Supreme Court decisions carry some significance in what is considered reasonable and fair at the current time in interpreting law. Parents may possibly be unreasonable; based on the outcome of hearing and judgements, it appears that districts may be as well. If people didn’t try to exercise their legally defined rights, they might not find that out.
Joeymom
Jun 23, 2008 at 12:17 am
In the article, it says the school district was forwarded $200,000 to help cover legal fees.
Imagine if they had just used that money to actually provide service instead. That’d be a fab ABA program for those girls.
Cliff
Jun 23, 2008 at 1:56 am
“In the article, it says the school district was forwarded $200,000 to help cover legal fees.
Imagine if they had just used that money to actually provide service instead. That’d be a fab ABA program for those girls.”
People miss the forest for the trees…
Cliff
Jane S
Jun 23, 2008 at 8:28 pm
We moved three times, twice within the state and once out of state. There are schools who only practice full inclusion and nothing else. I have tried working with the schools and even offered to pay for behaviorist to train their teachers. Though the law requires an appropriate education in the least restrictive environment, each state differ in their political will and their fear of litigation. It is not simple. I hope that I will get to the state where I will be able to sleep at night every night peacefully.
Legal Considerations
Jun 24, 2008 at 4:38 am
[…] meeting, and then sometimes (too often?) one finds oneself seeking legal counsel (as discussed in a recent post). Being “lawyered up” was hardly what Jim and I—being both educators by […]
Kim
Jul 21, 2008 at 10:53 am
These two little girls are educated in their home at the expense of the school district not at the school (their parents won’t let them come to the school)the few times they were allowed to come to the classroom during the kindergarten year they came with at least two para professionals, an ABA professional or two their mother and the special ed. teachers accompanying them at all times - they receive 40 hours a week of ABA for each girl and Speech and Occupational therapists (all in their home) (all at the district’s expense.) I’m just wondering - did any of you all receive this level of services from the public school system? This issue, to the people of our small community and rural school district, is not about autism - it is about keeping our school open for all the kids and there are about 500 others from ages 3-21 including others with special needs that need the school to be open.
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