Why The Newscast About Ryan Langston Left Me With a Heavy Heart
Many of we parents in the Down syndrome community waited eagerly for the segment that was to air this evening on NBC Nightly News with Brian Williams: a piece about the suddenly famous Ryan Langston, the little boy with Down syndrome in the recent Target and Nordstrom ads that have been a hot topic on blogs, Facebook, and elsewhere.
I caught the segment on the internet after it had aired. I, like so many other people, had anticipated a wholly moving and inspiring piece, a glimpse into this wondrous but average little boy’s life. And on the surface, that’s what we got.
To some, to many, any press is good press. And I wondered, as I watched and felt something like a stone sink in the pit of my stomach, “Am I overreacting? Am I being nitpicky? Am I the only one who’s watching this and feels like crying?”
Ryan Langston is a beautiful little boy with lots of energy, a mop of blond hair, lots of talent and a sense of humor, two parents who adore him, a twin brother (who does not have Ds), and a penchant for knowing exactly what to do for a camera. And this news segment was going to highlight the very normalcy of a little boy with Down syndrome. So what about this whole thing could possibly be getting me down?
Here, you watch:
Did you pick up on it? The part where Anne Thompson informs us that Ryan “attends a school for Down syndrome children . . . .”?
Why is it so difficult for People First Language to take hold for folks? I would like to think that a news outfit like NBC would do their homework before scripting a newscast that is meant to be an advocacy piece. How could a simple thing like appropriate terminology be overlooked?
But even more disheartening was hearing that this talented, smart little boy, who, as the news piece pointed out, can do so many of the things that most “average” kids his age can do – and some things most cannot do, like rock a Nordstrom ad – does not attend a regular school like most kids – like his twin brother – but instead, a separate school. A special school. A school for Down syndrome children.
I make no judgment against Ryan’s parents. I do not claim to know the circumstances that led to Ryan’s enrollment in a separate special ed school. It was just a very strange juxtaposition: a celebration of a child who is showing the world that Down syndrome is not so different, but a child who is separated, segregated nonetheless.
It hurts my heart. I don’t want that for Finn. I want Finn, and all children and people with Down syndrome to be fully accepted, embraced, and included. I want them to be welcomed to live and play and work and walk – and, yes, learn – alongside everyone else.
Is that ever going to happen?
31 for 21: An End to the IEP Drama . . . For Now
Michael and I signed Finn’s IEP yesterday morning. We have declined everything except speech therapy.
Last I wrote, we had received the Minutes from the IEP meeting, and the Minutes cast us in a very negative light. We are still dumbfounded as to why the Director found it necessary to throw so much into the Minutes that was opinion; it wasn’t merely a dispassionate documentation of the discussion. After doing some research, we learned that by signing the IEP with those Minutes attached, we would basically be agreeing to everything contained in the Minutes, including the Director’s personal opinions and characterizations of us. So we did type up a Parent Addendum, which included a lot (but not all) of what I wrote in my draft response here. That is now attached to the IEP as well, so at least both sides of the story are documented.
Anyway, Finn will begin speech therapy next week. The main reason we consented to it is because the speech therapist who worked with Daisy (on an informal basis; she had some pretty severe enunciation issues, but no IEP) in preschool has availability to take Finn on. This is not at our home school, but it is at the same school in our town where four of our kids have attended preschool and one has attended middle school. So we’re familiar with the campus and already have a positive rapport with this speech therapist.
I’ll be honest and say that I’m still not completely sold on the idea that speech therapy is going to make a big difference for Finn at this point. At the very least, however, I figure it will allow him an opportunity to get his toes wet in classroom setting, taking instruction from someone other than a family member. The speech therapist called me this morning to set up a schedule for Finn (he will go twice a week beginning next week, one individual session and one small group session, each 30 minutes long), and she remembers our family and Finn as a baby from when she worked with Daisy three years ago. She really put me at ease about the whole thing, so I’m feeling pretty good about it.
So we put the whole IEP drama to rest for the time being. In the Spring, we start the whole process over with new assessments in preparation for placing Finn in preschool in Fall 2012. For now I’m going to enjoy the reprieve.
Another Development in the Continuing School District Saga
We received the Minutes from yesterday’s IEP meeting and are quite pissed off about some of the characterizations:
Following is a draft letter I’ve written to respond. It’s a draft. I realize it’s rather emotional. It will most certainly be revised and edited before it goes out in final. But I wanted to get this on my blog since this seems as good a way as any to create a timeline of this whole nightmare, and frankly, I’m too tired to type up a detailed post right now, so allow this draft response letter to the school district fill in the blanks for you.
At Long Last, the IEP Meeting
On the last episode of School District Chronicles, the Morguess family received another Meeting Notice from the school district informing them of the mutually agreed-upon IEP meeting date and time, with a twist: the school district’s attorney would be present at said meeting. The Morguesses objected (in writing) to the attendance of the school district’s attorney, and said objection was followed up by a phone call to the Morguesses by the Program Coordinator. An extremely pointless and frustrating conversation ensued.
However, said fruitless phone conversation (which ended with the Program Coordinator saying, “I’m going to hang up now,” and, in fact, hanging up) was followed by yet another revised Meeting Notice (as well as a letter from the Program Coordinator confirming/mischaracterizing/recasting the phone call). The Meeting Notice noted several changes in personnel on the “team,” and the absence of the school district’s attorney per our objection.
This afternoon was the long-awaited IEP meeting. I dreaded it for days, and tossed and turned over it for nights. Michael repeatedly gave me pep talks about the importance of remaining calm, cool, and collected during the meeting (I won’t bullshit you – I tend to get, shall we say, high-spirited? pertaining to matters close to the heart). We spent hours talking about what we wanted to accomplish at the meeting, as well as longer-term goals pertaining to Finn’s educational placement. I debated the wisdom of downing a couple-three shots of tequila just prior to the meeting . . . you know, just to take the edge off (I kid!). Michael and I typed up an outline to take to the meeting so as to make sure all the points we wanted to cover got covered:
IEP MEETING - POINTS OF DISCUSSION Concerns not addressed- - Timeline of transition process/school district's failure to begin process by April - Manner in which assessments were undertaken - Our being deprived of opportunity to respond to assessment reports - IEP developed by school district without our input, and meeting held without us Recommended Preschool Placement- - No typical peer models - No interaction between the children/group activity - Physical restraint of students by teacher/aides - Five days/week, five+ hours/day Questions- - What other preschool programs are available? - What would speech therapy outside of preschool placement look like? Goals- - New assessments next year - Preschool placement in a typical preschool, full inclusion, with necessary accommodations
So we go to the meeting this afternoon, which was held in a conference room at the school at which the special ed preschool they recommended Finn be placed in is located. Michael and I walk in and there are TWELVE people sitting around a table. Now keep in mind that we were already none too happy that the last Meeting Notice listed ten people that were going to be in attendance (not including the two of us), and then when they agreed to uninvite their attorney, that brought the number down to nine. But suddenly we were faced with twelve people this afternoon, because they just for some inexplicable reason decided last-minute to invite a couple more people who were not listed on the Meeting Notice that we signed. What. The. Fuck?
So again, the atmosphere is charged with negative vibes and tension from the first second we walked into the room.
Why, why can’t these people just for once do something that feels cooperative and collaborative? Why can’t they do something that eases the tension instead of compounding it?
There were two empty seats, clearly meant for me and Michael, and we sat down and I immediately expressed my surprise and dismay at being faced with twelve people, and I asked for introductions. I can’t even remember who everyone was – who the extra people were.
We finally got to meet the Program Coordinator face to face. Not what we had expected! We both expected her to be older than us, somewhat matronly and a little prim maybe. Turns out she’s younger than us (by the looks of her anyway), somewhat of a funky dresser (fur-trimmed sweater-coat), and really? Kind of a bitch. I mean that in the nicest possible way. Not really.
Ms. Program Coordinator is in serious need of an extended workshop in Interpersonal Skills. We kind of knew this already from the letters and phone calls, but it was confirmed in person this afternoon. It was clear to everybody in the room from minute one that she doesn’t like us and the feeling is mutual. She was condescending to us and would get this sneer/smirk on her face. At one point I asked her how she would feel if she went into a meeting to discuss her child and was faced with twelve people. She responded with “I have.” Implying, no doubt, that she herself has a child with an IEP and that she’s been through this process on the other side. If that’s the case, I would think that would instill in her a bit of compassion, a bit of sensitivity, and a hell of a better tableside manner than she’s in possession of.
We were going to audiotape the meeting (and told Ms. Program Coordinator so during that fateful phone call last week), but Michael forgot to bring the recording device (boo!). Ms. Program Coordinator had in front of her on the table her own recording device, and there ensued a brief skirmish when Michael encouraged her to audiotape the meeting anyway, despite the fact that we wouldn’t be, so that at least there would be some neutral, completely accurate record of the meeting, but she refused. She was only going to record the meeting as a defensive gesture.
Anyway, things got heated right away because we were handed an agenda for the meeting and I said, “No, we have an outline, and there are things we want to cover.” The principal, who was actually very nice and professional, sent everyone out of the room for a few minutes with the exception of me and Michael, the Director of Special Ed, and Ms. Program Coordinator. Michael and I brought up the concerns we’ve repeatedly brought up which have never been addressed (including the fact that our concerns have never been addressed!), and eventually, Ms. Program Coordinator excused herself from the meeting, after expressing how insulted she was that we weren’t happy with the job she had done thus far. Honestly, after she left, it was a relief (and we’ve been assured that, although everyone on the team “adores” her and she’s “fabulous” at her job, we will never have to deal with her again). We gave the principal and the Director a run down of what’s happened so far – the school district dropping the ball and getting the transition process started very late, which created a time crunch which resulted in the assessments being undertaken in a rushed and stressful manner and ultimately the IEP meeting being held without us, despite our many protests.
They apologized. The fact of the matter is, there is no turning back the clock and starting over and doing it the right way. What’s done is done. But at least they finally heard us out and acknowledged that the pooch has been screwed.
Now, if we were actually interested in a preschool placement for Finn now, it would most certainly be worth it to fight the good fight, bring in an advocate, possibly an attorney, file a due process complaint, etc. But the fact of the matter is that we’ve already decided to forego preschool – any preschool – for Finn until Fall 2012, when he’ll be four. So we got our complaints and concerns heard and on the record. And we told them that:
– we are declining preschool placement for now;
– we are interested in hearing about speech therapy for Finn outside of a preschool setting;
– we expect new assessments to be undertaken next year (quite possibly by an independent party/parties)
– our goal is to have Finn enrolled in a typical preschool next year.
So we talked about speech therapy. And as it turns out, for his age, if he were to receive ST through the school district outside of a preschool setting, he would receive it at one of three schools in our district, and one of the schools they named is the school where our other kids attended preschool, Kevin attended middle school (it’s a K-8 school with a preschool program), and Daisy received ST when she was attending preschool there. So we already know (and like!) the SLP at that school. The truth? If we could get Finn in with her for ST a couple times a week, I would be happy.
As an aside, regarding speech: the SLP at the meeting today mentioned PECS. Is anyone familiar with this? I’d love to hear more about it (and will be doing my own research, of course).
Nobody balked when we said we intend to have him fully included in a typical preschool next year, but I know full well that that only means it’s not a battle they want to get into right now. I have no doubt that they will fight us on it when the time comes. Our school district seems to be against inclusion at this point – don’t know if it’s funding or the personal philosophies of the district bureaucrats or what. A perfect example is the little girl at our home school (where four of our kids attend school now) who had Down syndrome. She’s in third grade now, and has been fully included in typical classes since kindergarten, but the school district is now fighting to have her removed and placed in a self-contained special ed class at a different school. I talked to the little girl’s mother briefly the other day and she said she and her husband are on the verge of filing a lawsuit. It’s so discouraging to hear that it’s come to that.
Anyway, to summarize, today’s IEP meeting started off badly but, in the end, we were heard. We just have to make a decision about speech therapy now.
Another Footnote in the Ongoing School District Saga
A few weeks back I wrote about a letter we had received from the school district following up on the proposed IEP the district drew up for Finn. In a nutshell, the letter:
- Summarized the proposed IEP;
- Expressed a willingness to arrange for us to visit the preschool in which the district is recommending Finn be placed, if we wished;
- Denied our request to receive information about or visit other preschool programs; and
- Suggested we move forward in the process by arranging a meeting with the IEP “team.”
Michael and I visited the proposed preschool placement on our own, which I wrote about here. We followed up that visit with an email to the “Program Coordinator” (I don’t know exactly what this means; she’s the one we’ve mainly been communicating with and who, I guess, is the one coordinating the meetings and so forth. She is employed by the school district, but I really don’t know what her official capacity is – teacher? therapist? secretary?) giving our availability to meet with the IEP “team.”
I don’t know why, but for some reason, although I still find myself very frustrated and, frankly, pissed off, at the way this entire process has been handled by the school district from the beginning, I had thought that maybe, just maybe, we would be moving forward from here in a more cooperative atmosphere. Silly me.
We got the official Meeting Notice in the mail two days ago:
Visit to the Special Ed Preschool
This morning Michael and I, along with Finn, visited the special ed preschool class in which Finn’s IEP “team” (sans parents; I use the term “team” extremely loosely since there has been no collaborative effort from day 1 of this process) recommends he be placed, post-haste.
It’s true that, for a variety of reasons, we have already decided that we are leaning against placing Finn in any preschool program at this time, and it’s also true that we (or at least I, maybe more so than Michael) have our hackles up about a segregated special ed program. That said, I really wanted and attempted to go into this morning’s visit with an open mind.
Finn’s IEP “team,” in their last communication with us (see here), offered to make arrangements for us to visit the preschool program they are recommending for Finn. Given the adversarial nature of our relationship to date, however, I didn’t want to make the arrangements through the “team,” and figured we were pretty capable of contacting the school and making the arrangements ourselves. So a couple weeks ago I contacted the school, a Title 1 school, and was put in touch with the school psychologist to arrange to visit the preschool class.
In an interesting turn of events, it turns out that this particular school psychologist has replaced the psychologist originally on Finn’s IEP “team” (I know, it’s irritating seeing those quotes around “team” all the time, but I will keep using them until the “team” actually starts being a team that values us, Finn’s parents, as members), and she is the mother of a classmate/friend of Joey’s. I don’t know at this point if this is a good or a bad thing (or meaningless), but I did think it might be worth some name-dropping this morning when we met with her.
Anyway, she was nice enough (maybe friendlier, knowing that her son and our son are friends/classmates?). She oohed and ahhed over Finn (I’ve gotten used to this, but still rarely know how to take it) and took us over to the special ed preschool classroom.
My initial internal reaction was, “Well, this doesn’t seem so bad.” In a lot of ways, it looked like a typical preschool classroom, with lots of artwork on the walls, toys and books and little tables and chairs. There were twelve children in the class, ranging in age from 3 to 5, and there was one teacher and two aides. There was a section of tables and chairs in the center of the classroom where most of the children were sitting, each engaged in a different activity: one was painting, one was playing with a puzzle, one was banging some kind of toy on the table, one was looking at a book, etc. Two children at a time were pulled from the group and taken to “stations” at the periphery of the classroom where they received specialized instruction in 10-15 minute segments (I believe one of them was receiving speech therapy, and the other station involved a computer). I could see that two of the children had Down syndrome; the rest of the children appeared to have varying diagnoses. There were no “typical” children in the class.
It took a few minutes of being there to start getting a sense of what I didn’t like about it:
- There are no typical children in the class; no typically developing peer models.
- There did not seem to be a real sense of cohesiveness to the class. Because there are varying diagnoses/needs/ability levels/behavior issues among the children, to a large degree it seemed like the teacher and aides were engaging in crowd control (not that it’s a big crowd; it is a small class, which is a plus), trying to keep each child occupied and on task. But each child was engaged in a different activity, I assume based on that child’s IEP (??). We were only there for a half hour, but we didn’t see any group activities or any interaction between the children.
- Neither the teacher nor the aides seemed particularly warm, and in fact, seemed a little harsh at times. I saw the teacher and one of the aides, at different times, grab different children’s hands, say “Hands down!” sternly, and rather roughly move their hands away from whatever it was they weren’t supposed to be touching. Frankly, I’m not at all keen on my kid being manhandled like that.
- This is a five-days-a week, five-plus-hours-a-day preschool program. All the children in the class attend full-time. There doesn’t seem to be an option for fewer days or hours of attendance.
Look, I know from a purely clinical standpoint, there is truth to this theory. But I hate this line of thinking more and more all the time, for so many reasons. First of all, it seems like every “expert” who has tried to sell us on this “fact” has come by their “expertise” by training and not by first-hand observation and experience as a parent of a child with Down syndrome. The same way that obstetricians are trained to believe that highly interventive hospital births are by and large the safest option for having babies, SLPs are trained to believe that formal speech therapy from infancy is the best way to overcome speech issues, physical therapists are trained to believe that if not for their intervention, children with Down syndrome would come by their gross motor skills much later, and in the wrong way, and special ed teachers are trained to believe that kids with developmental delays of all varieties belong in special ed classrooms promptly at age 3. I just can’t buy into this wholeheartedly. Sure, this is true for some kids in some situations, but it’s not a one-size fits all proposition. And it overlooks the value of organic learning that comes from just being loved and cared for and fully included in a family and that family’s experiences.
Also, this line of thinking promulgates the whole cultural belief that kids like Finn are a set of problems and issues to be addressed and fixed. He is a human being, not a problem that I want a lifetime spent on trying to fix, or make as “normal” as possible. Frankly, “normal” is an ideal that I don’t think he should have to spend his life trying to achieve; it only sets him up for failure and promotes the attitude that he’s defective. This is not to say that certain supports at certain times throughout his life won’t benefit him, but I’m just weary of this whole notion that speech therapy is going to fix his speech, and occupational therapy is going to fix his fine motor skills and physical therapy is going to fix his gross motor skills, and special ed is going to . . . what? He’s always going to have Down syndrome, and this means certain things that can’t be changed. I accept that, with all my heart. It seems like it’s everyone else who can’t accept that. Let’s try to improve him. Let’s try to fix him. Let’s try to make him as close to “normal” as possible, and then maybe, just maybe, he will be more acceptable.
I digress. Obviously, this is an emotionally charged issue for me. And I guess it goes without saying that I’m not sure. Of course I’m not. This whole thing would not be such a struggle for me if I were sure about everything. Am I selling Finn short? Am I overshooting? In my heart of hearts, I don’t know.
Anyway. The school psychologist explained to us that there is actually another special ed preschool class that is categorized as “mild to moderate” (this one, the one recommended for Finn, is “moderate to severe”), and the main differences between the two are that: (1) the kids in the “mild to moderate” class are fairly verbal, (2) they are toilet trained, and (3) there are more kids in the class and only one teacher and one aide, so a higher student-to-teacher ratio. This explains why the IEP “team” wants Finn placed in the “moderate to severe” class: he’s not toilet trained (truth be told, we have not even attempted it yet, but I am psyching myself up to tackle it in the near future), and he has little speech (though, I have to say, he is picking up words left and right lately, it’s been pretty amazing to see just how verbal he has become in the last couple of months – and with no speech therapy! Imagine that.).
She also told us that the goal is to have the kids “mainstreamed” by kindergarten (and in special ed, kindergarten starts promptly at age 5, period; the powers that be see no benefit in some parents perhaps wanting to delay kindergarten for a year as many parents of typically developing kids do). Now, for those of you who may be under a widely held misconception, “mainstreaming” and “inclusion” are two entirely different animals. “Inclusion” means that the child is in a regular classroom with regular, typically developing peers, full-time. They may have an aide, and they may get pulled out of class for things like speech therapy and the like, but they are enrolled in a regular classroom. A lot of lay people think this is “mainstreaming,” but it’s not. “Mainstreaming” is when a child is enrolled in a separate, special ed class, and is allowed to spend limited periods of time each day or each week with the typical kids. The school psychologist told us today that for this particular preschool program, the goal is to have them “mainstreamed” by kindergarten, which she explained specifically to mean that in kindergarten they spend 30 minutes a day (or less) with their typically developing peers.
Sigh. So where does all of this leave us? Good question. What I can say is that what we saw today, and what the school psychologist explained to us about how his future education might look through the eyes of the school district is just not what I envision – or would like to envision – for Finn. We visited the preschool program today so that we could go to the next meeting with the IEP “team” and be able to articulate our thoughts about their recommendations. I’m not in favor of this placement for Finn; I think it is very possible, and not unrealistic or unreasonable to think that he could start preschool in a year at some type of preschool with typical peer models, perhaps do two years of preschool, and maybe start kindergarten, fully included in a regular kinder classroom at our home school, by the time he’s 6.
As it stands right now, we have been waiting two weeks to hear back from the IEP “team” about scheduling a meeting.
And that’s all I have to say about that. For now.
School District Shenanigans
Meanwhile, back on the farm, we are still in the midst of the unresolved mess with the school district concerning Finn’s proposed IEP.
We last communicated with the school district back in July, when they held Finn’s IEP meeting without us and then sent us the proposed IEP for him that they had developed without our input. After responding to them in writing telling them to screw themselves (in code), we decided to put the whole mess on hold and enjoy the rest of summer break, which we did. As summer break drew to a close a week or two ago, we received this letter from the school district:
This letter is actually quite handy, as it succinctly summarizes what the school district is proposing for Finn’s IEP. And as you can see, what they are proposing is preschool in a separate special ed school servicing children with moderate to severe disabilities, five days a week, five+ hours each day. Finn is three years old. And they think he should go to school every day for five+ hours a day.
I don’t know – I suppose it’s possible that, as in a game of bargaining, they are starting out high, assuming they will be haggled down? However, that really doesn’t make sense, as it would be us, the parents, bargaining for more, not less, right? (Although we are the rogue parents who actually do want less . . .) Anyway, preschool five days a week for five hours a day for a three-year-old seems really excessive to me, and not something I am willing to entertain.
I like how they say that they are sorry we didn’t attend our son’s IEP. Fortunately, we have everything meticulously documented, so they can try to play it off this way, as if we were negligent or disinterested or somehow egregious in our actions, but our documentation tells a different story entirely.
I assume a lot of the verbage in this letter is boilerplate. It certainly doesn’t lend to any sense that there is anything truly individualized about this process. The paragraph on the second page about offering twelve days of services over the summer to “prevent regression” – what the eff? If this were truly aimed at Finnian specifically and not just some standard paragraph inserted in their form letters, this paragraph wouldn’t have been included, because they would have taken into consideration that Finn has received no services since last year (at our option), so offering services over the summer (twelve days! pfftt) to “prevent regression” (regression from what? From the forward progression he has continued to make without any services?) isn’t even applicable to this particular little boy. I also like how they misspell Finn’s name on the last page of the letter; really makes me feel confident that these people (a) see my son as an individual, and (b) are experts in the education field.
The school district makes very clear that they are unwilling to offer us any options for Finn’s preschool placement. “It was determined by the IEP team [without the parents’ input – and the parents are supposed to be an integral part of the IEP team] that Finnian requires as his least restrictive environment to meet his unique needs a program that serves students with moderate to severe disabilities.” Period, end of story. I have this sneaking suspicion that this placement has nothing to do with Finn individually or specifically; I suspect that this particular program at this particular school is the only option offered to any child with Down syndrome (or other disabilities) by this school district, and that this placement was determined before they ever met us or Finn or conducted any of their assessments of Finn. Just a hunch.
I’m not going to bag on special education classrooms in general. It’s a viable option for many families, and I’m sure it works out well for some children. There are a whole host of reasons why I do not want Finn boxed into a special education classroom, not the least of which include the fact that I strongly believe that he will get the most benefit from typically developing peer models, and that I strongly believe that full inclusion in school benefits everyone, including typically developing children.
That said, Michael and I will be visiting the preschool class being offered, if only to be able to say that we took the time to check out what the school district offered in order to give it legitimate consideration.
However, we have all but made up our minds that Finn will not be attending preschool for another year – special ed or otherwise.
I confess that it’s not always an easy thing to go against the grain. Most of the parents I am acquainted with who have children with Ds do seem to travel a path that follows a prescribed protocol: all the therapy and services available from as soon after birth as possible, and then preschool promptly at age 3, if not sooner. This works well for many families, and most of those families believe that this protocol has had actual impact on their child’s development and abilities. I can’t argue with that assertion. I can only speak for us, and say that I don’t believe that any of the therapy Finn received for the first couple years of his life made any difference; he has continued to thrive and make great developmental strides without any therapy or services for the last nine months. And I don’t believe that another year without preschool is going to make or break him. I am not in denial that he has special needs, that he is developmentally delayed, and that at some point, he will benefit from the special help that certain professionals can offer him; I’m just not convinced that the time for that is now.
So we have an appointment to go visit the special ed preschool in a couple of weeks, and then we will meet with the IEP team again and hash things out with them. As I said, we are heavily leaning towards declining preschool placement for now (and what I envision for next year – and will be looking into over the next year – is some type of private preschool, which the school district will not support), so the big question when we meet with the IEP team in a few weeks will be: do we want services (speech and/or occupational therapy) for Finn through the school district even if he’s not attending preschool? We are leaning against that as well, but are willing to at least ask them what stand-alone services would look like.
My guess, though, is that we will be declining everything and starting the whole IEP process from scratch in a year.
Finn’s Transition to School District – Part V
Seriously, have you ever seen a transition happen in so many parts?
Last I wrote, the school district had informed us under no uncertain terms that they would be holding Finn’s IEP before his birthday, with or without us – and with their legal counsel present – despite our protests that we were not going to be available on either of the dates they said they were going to conduct the IEP. We followed up with this letter to the school district.
I believed in my heart of hearts – naively, apparently – that after we sent that letter, clearly citing the legal authority that protects our right as Finn’s parents to be present at the IEP, that they would not go ahead and conduct the IEP without us. After all the research we did and the people we talked to, including a former SELPA director who we met for lunch and talked to at length and who is so appalled by the situation that he wants to step in as an advocate for us, it just seemed inconceivable that the school district would escalate what has already become such a terrifically adversarial situation further.
I was wrong. We were wrong – all of us who thought they couldn’t or wouldn’t have Finn’s IEP without us.
I was out most of the day last Wednesday – the day before Finn’s third birthday. When I got home with the kids in the afternoon, there was a voice mail message from our Regional Center Service Coordinator saying that she had received a call from the school district saying that they were going ahead with the IEP at 2:00. Her message was left on our voice mail a little after 1:00. By the time I got the message, the IEP was already in full swing – or probably over. That morning, our new advocate friend had been making phone calls to his connections on our behalf – to the director of our SELPA area board, to the school district Program Coordinator, and to the school district’s legal counsel. He had hoped to reason with them for us, but he was never able to get through to anyone. He was able to confirm for us later in the day that they had, in fact, held the IEP without us.
So we were robbed of the right to request modifications to the assessment reports. We were robbed of the right to request an independent evaluation, had we felt that to be warranted. We were robbed of the right to contribute input to Finn’s IEP. We were robbed of the right to participate in the meeting as the two people who know Finn best.
And here’s another kicker: nearly a week later, we still have not received the fucking proposed IEP they drew up. I assume that had we been at the meeting, they would have had it sitting right there for us to take home and ponder – am I wrong? But they haven’t bothered to, or been able to, for whatever reason, get it mailed to us yet. Michael finally called yesterday and left a message for the Program Coordinator inquiring when we can expect to receive the proposed IEP. She called him back this morning and said she would “try to get it in the mail today.” Really?
There are parents out there who are advising us to do what we can to get along with the school district, to trust that they have Finn’s best interests at heart. While I see their point, I am having a whole lot of difficulty with it. I know this isn’t personal – the school district isn’t setting out to target Finn or us – I know that. However, they have screwed us at every turn so far in this process. How many other kids/families are they screwing? Change isn’t brought about by lying down and taking it. While I understand the logic of not setting the tone for what is going to be a very long-term relationship as adversarial, the fact is that they set that tone right out of the gate. They have made no effort whatsoever to even give the appearance of trying to work with us. And as a result, we are left feeling frustrated and angry, and wondering just what the hell we’re supposed to do in order to protect Finn’s rights and get along with a system that doesn’t care to get along with us.
Letter to the School District
This went out this afternoon:
We received your email yesterday afternoon informing us of the school district’s intention to conduct our son’s IEP meeting next week without our presence. Enclosed are the Notices of IEP for July 5 and 6 you again sent us; we have again noted our unavailability for those dates and have proposed alternative dates.
This letter serves as notice that the District is not authorized to conduct Finnian’s IEP without us. Our right to attend our child’s IEP is protected under IDEA 2004 Regulations, 34 CFR § 300.322 (a), which states:
Public agency responsibility – general. Each public agency must take steps to ensure that one or both of the parents of a child with a disability are present at each IEP Team meeting or are afforded the opportunity to participate, including-
(1) Notifying parents of the meeting early enough to ensure that they will have an opportunity to attend; and
(2) Scheduling the meeting at a mutually agreed on time and place.
As we already informed you in writing, we are unable to attend on either of the dates proposed by the school district (July 5 and 6, 2011). We proposed three alternative dates for the IEP. If none of those dates work for the District, please propose alternative dates and times.
The District has failed to meet timelines set forth by the State for transitioning our child from Early Intervention to school district services. The initial transition meeting was supposed to have taken place by the time Finnian reached the age of two years and nine months, or early April 2011. However, the District did not schedule the transition meeting until June, just a little over 30 days before Finnian’s third birthday. This has resulted in the District attempting to deprive us of our right to have 15 days to review the Assessment Plan, and also as a result, the District has ignored its responsibility to conduct the assessments of our son and develop an IEP for him in a thoughtful and collaborative manner over a period of 60 days.
We refuse to continue to be rushed through this process based solely on the fact that the District has failed to meet its responsibilities, including being threatened with Finnian’s IEP taking place despite our unavailability to be present for the dates the District has unilaterally chosen, our expressed and repeated desire and intention to be present when the IEP finally does take place, and our proposal to you of alternative dates.
It seems that the District has now left itself in the position of deciding which violation is the lesser of two evils: conducting the IEP after Finnian’s third birthday in light of our consent that you do so, or conducting the IEP without our presence despite our expressed desire to be present on a mutually agreeable date. We hope the District and its attorneys will agree that our presence and input at the IEP is a higher goal than avoiding the mere possibility of sanctions for conducting the IEP after July 7; a decision to go forward without us is based purely on self-interest without recognition of the position the District has put Finnian and us in.
In any case, we do intend to be present at our son’s IEP meeting on a mutually agreeable date, and reiterate that the District is not to conduct the meeting without our presence. If the District conducts the IEP in our absence we will have no choice but to file a complaint and/or due process complaint.
We also have an opportunity to meet with that former Director of a local SELPA this weekend. Will update . . .