Legal Considerations
June 24, 2008 by Kristina Chew, PhD
Filed under Health
Never in my life have I entertained thoughts of being a lawyer: A doctor, yes, at one time, and some other much-less-lucrative pursuits. The closest I got to law school was a summer job when I was in grad school; the law schools career development director hired me to read stacks of surveys from alumni/ae and write up a summary report. “Litigation” was the specialty most frequently checked: Double no thanks, I thought, as I entered data into the computer.
Time passes, one stops working odd and temp jobs, one gets married, has a baby, gets a full-time job, the child is diagnosed with autism…….. Many therapies, therapists, classrooms, doctors’ offices and more later, one finds oneself at IEP meeting after IEP 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 profession—-would have thought the best or the right way to get Charlie the education he needed. While we did not have to go to due process or even have our lawyer accompany us to school meetings (Jim had once planned to go to law school and he would definitely have been in the courtroom), things frequently reached a very uncomfortable stage (and more than a few times Jim wished he had become a lawyer).
We were able to get Charlie into a private autism school instead of the public placements that the district wanted Charlie in. But it’s never over till it’s over: The school closed six months later and we would probably have had to turn to a lawyer again, as none of the private autism schools that were best suited to Charlie’s needs had openings for an 8 year old autistic boy. Rather than enter another legal wrangle with the school district, we left.
Things have worked out with the schools for Charlie, though I know that’s not the case for every family in the district. I’m just signing off on Charlie’s IEP (we’ve been working on it since early May) and we are in a position of pretty much agreeing with the school district on almost everything. And yet, there’s still that nagging question in my head: Are we challenging Charlie enough? He is in a self-contained classroom, with a 1:1 ratio of instructors to students and an extremely structured school day, with activity schedules and devices like the Language Master (as explained in this book). He’s not mainstreamed in any subjects; past attempts (in a previous school district) were not successful and more frustrating, especially for Charlie.
Emily is seeking input about experiences with mainstreaming for a journalistic report. I’m very eager to read what she finds. Mainstreaming in the classroom is not a current goal for Charlie, who’s nowhere near his grade level in any academic subject. Did we do enough, I sometimes wonder, and it is possible that the particular level and mixture of what Charlie struggles with make mainstreaming not the main focus of his education right now and not anytime in the near future?
Jim and I have tried to make up for this by constantly taking Charlie out into the world. Charlie’s not ready to ride his bike off on his own, but the bike does provide him with a way to take himself where he’s going. While I was scared to distraction at the thought of Charlie riding on the streets, I’m very glad that Jim undertook this. Charlie might not be mainstreamed in school, but he can certainly pedal amid cars parked and moving. Charlie needs guidance, but he can handle being in regular traffic.
And certainly neither of us had any special expertise in either bike-riding or teaching it. Part of being the parent of a child who has, literally, “special needs,” is that you get good (well, kind of decent) at taking on projects yourself; at assuming a certain DIY attitude, maybe because you just can’t afford to pay another therapist—or you know your child needs you to learn best—-or because you’re motivated by some core belief and, quite to the experts’ amazement, you do what you have to do: A few months ago, Neurodiversity.com blogger Katheen Seidel quashed a subpoena delivered to her by vaccine litigation lawyer Clifford Shoemaker, who has now been sanctioned by a federal magistrate judge in New Hampshire for abusing the legal process. Mr. Shoemaker has been ordered to “attend ethics training and directed his court clerk to notify the Virginia State Bar so that it could consider disciplinary action on its own.” Seidel is a librarian by training and the mother of a child with Asperger’s, and really good about researching and writing about autism and legal issues.
More lessons learned, in and out of the classroom, the IEP meeting room, and the courtroom.
Me and my husband live in constant frustration with the school system. We are just starting out and I found myself have breakdowns and sleepless nights…now I am beyond irriated. Currently they are both in a early intervention preschool, better then what the school district offers, but still there are things that bug me. I now understand why people get fed up and start home schooling. I have wanted them to stay in school because of the social aspect, but then I discover that throughout the day when there is free time my oldest spends his time looking at fish, birds or roams around by himself…despite what is put on the IEP. He actually likes kids and people, but is truly shy and really has no clue what to do….no one thinks that this matters…so then I think, gee he may as well be home with me. My oldest start kindergarten this Fall at a new school. We will see. I also have the problem of the school not challenging them. They are both smart. I was worried that maybe I was seeing things through a mother’s eyes and spoke to two of their private therapists. They told me that a lot of parents sometimes expect a little too much with kids who may not be ready…that isn’t the case with my boys. They just have such verbal issues that everyone just assumes that they are incapable. I see my oldest getting bored beyond belief, but no way to really express it…any my youngest heading in the same direction….I am learning that I am having to become lawyer, advocate, OT, speech therapist, behaviourist, nutrionist, and teacher. I often fear about all my inadequacies and then remember…oh yeah….I don’t have time for negative thoughts…”Time to suck it up mom and just do it!”
BTW…I am thrilled that she got that subpeona squashed!
I spent an hour on the phone yesterday with next year’s teacher who had my eldest for half days this year. He wasn’t at the IEP mtg on Fri – ill. He’s had poor, in-school placements, for ex, this year was a 3/4 split, 1/2 day one teacher (the good one he’s getting next year), and 1/2 day ended up being 2 teachers (Sept to Dec; Dec to June) and now at the end of the year he’s fraying. These kinds of poor placements have been the norm for Gr 1 to 3.
My IEP meeting was very frustrating, unproductive and negative so the teacher and I had a chat…. They’ve (Admin) promised changes for next year and I have doubts – b/c they’ve never listened before. He’s come so far, so fast he appears “normal” at first glance/listen, and his academics are average for his grade/age and they can’t figure out why he isn’t “normal” socially and behaviourally as well… DUH!!!. Next year I have a good teacher for the cores (only 1 Teacher this time) and only 1 grade. I sent a PILE of books/papers to school today for the teachers summer reading… hoping it helps. Supposedly he’s to get pt-time support as well. I also finally got OT reinstated and psychometric testing is in July (had to argue that one too).
Mainstreaming… is dangerous and had I known then… what I know now… but unfortunately, they can do as they please in the end.
Little boy is integrated. And I’ve stayed on top of it more, made more demands and so far…. I couldn’t be more pleased. That may change unfortunately… but he’ll be fine for another year so I can deal with the elders issues.
There are days I can’t believe they go to the same school.
@tracey, you wrote—”I also have the problem of the school not challenging them. They are both smart. I was worried that maybe I was seeing things through a mother’s eyes and spoke to two of their private therapists.”
That last sentence really hit home. It’s often felt that, no matter how much I’ve read and researched and talked and explained, I’m still not sure. Always seems my personal “mom” viewpoint — the go with your gut feelings that people seem to suggest one should go by — is colored by feelings that may get in the way of making reasonable judgments. For myself, I’ve learned I have to really watch my son and see what he’s telling me, with and without words: He’s had a certain peaceful expression on his face, been talking a lot spontaneously, and has been fairly easy-going about having to do things he wasn’t expecting, and those are signs for us that things are ok.
@farmwifetwo, that’s too much back and forth for everyone! but used to spent those hours and send in reports, evals, books. changes were made—such as starting verbal behavior training for teachers; unfortunately, about 2 years after this might have helped my son. Since he did not go to kindergarten and still needed 1:1 teaching and more, the school district just did not seem to know what to do with Charlie when he was 5; preschool had been (while not perfect) ok.
Hope things smooth out…..
I have struggled with this issue since our son Casey was in the first grade. We attempted a “cross-categorical” classroom for him, which contained a mixture of disabilities and labels. Despite our attempts at trying to make it work, the school fought us and we put him in an all Autistic program, which at the time, was a Godsend in some ways (more for me than him I’m afraid). He has since left that school after 4 years, and we are moving on to a 5-6 school where he will be part of the day in a self contained room, part in regular ed. I think I mentioned this in one of my comments on another of your posts, but we are mainly doing this to give him exposure to “typical” kid behaviour. The education part, if he picks on some of it is a bonus. I guess I want him to have the best of both worlds, being with kids he could really potentially connect to, and being with kids who he can take away from social normalities from. Like you, I really go back to my mother tiger instincts to know what is right for him, and not my pride, or my own security. It seems to work for us!
Our experiences are so similar. Jack currently is in a private placement receiving the 1:1 intervention he needs. But we work hard to include him in as many community outings as possible. Events at my older daughter’s school … family dinners out at least one night a week … weekly trips to the grocery store with his cousin and Home Depot with his dad. He loves being out and about.
I know I am not doing enough, I wish I could do more. My younger son is mainstreamed and doing great academically which he still needs help with his behavior. My older son is in a self-contained classroom. Last year, there were 9 students, 1 teacher and 2 aids. My son can do the work but is lazy and needs constant prompting. But the teacher and aides have to work more with the lower functioning kids. He is getting lost in the middle, not quite functioning enough for mainstreaming, but not low enough for the extra guidance.
Yeah, mostly I have had to navigate the system and what are my rights on my own. I would’ve been pretty good at giving my memorized, pre-written arguments during IEP meetings, but they’re only thirty minutes each with so much talking from the other people, that between processing what others have said (which is necessary to watch that I don’t accidentally agree to some really absurd notions), then I end up getting hardly two words, if lucky. Unfortunately, since my parents work so much to save money for college (though my tuition is paid entirely through grants, it is a real struggle to be able to afford things like room and board and textbooks), and so I’ve researched these things on my own.
It’s very frustrating always dealing with and relying on people who think they know a lot when they know hardly anything and/or think that because they mean well that they can do no wrong. Unfortunately this has been in my experience pretty typical in these systems.