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.
***
Dear [Director] –
We received, via email yesterday, the IEP offer along with the attached Notes/Minutes from Wednesday’s meeting. Although the meeting got off to a tense start, we walked away feeling as though some headway had finally been made towards a collaborative effort on our son’s behalf. We are extremely disappointed that the notes you took during the meeting, and the subsequent Minutes, which are the product of those notes, do not reflect that, but instead cast us in a decidedly negative light. The Minutes you took omit a great deal and characterize us unfairly and, we feel, inaccurately. We therefore respectfully request that this letter be added as an Addendum to the Minutes so that Wednesday’s meeting is more fairly portrayed.
All we have ever wanted and expected is to be treated fairly by the school district and to have our son’s rights, and our rights as his parents, respected. We have never made demands or requests of the school district for more services, or more of anything – and in fact, we have declined both various assessments and services offered. To that end, we have not asked the school district to jump through any hoops, nor have we placed ourselves in a position of in any way depleting the school district’s resources. What we have asked for has been extremely minimal: honor our rights. Respect us, Finnian’s parents, as integral members of the IEP team – most certainly the most important members of the team. See Finn as an individual, and us as two people who are extremely invested in his wellbeing.
From the very first meeting – the Transition Meeting on June 3 – the school district has apparently seen us as opponents rather than true members of the “team.” Furthermore, it is clear that the school district is well aware of its own screw-ups and violations with respect to its handling of Finn’s transition and development of an IEP, and every action, phone call and letter on the part of the school district since that first meeting has been defensive and clearly meant to cover its own rear end. In other words, the school district screwed up, we have repeatedly raised concerns pertaining to those screw-ups (which the school district has repeatedly failed and refused to acknowledge or address), and therefore the school district views us as a potential lawsuit and treats us as such. Your Minutes from Wednesday’s meeting reflect that position well: we are cast as unreasonable and adversarial, none of the concerns we actually discussed yesterday are noted anywhere in the record (that would be documenting the school district’s screw-ups, which I guess the school district would like to avoid), and the school district comes across, at least in the written record, as completely reasonable and, in fact, victimized by us.
Let the record reflect the following:
• Mr. Morguess did, in fact, forget his tape recorder. [Corrdinator] had a recording device in front of her on the table, however, and Mr. Morguess encouraged her to go forward with recording the proceedings so that at least there would be some complete, accurate, and unbiased record of the meeting. [Coordinator] stated, “I can’t do that.” She refused to say why she couldn’t, which could only lead to the assumption that she was refusing to record the meeting, not that she was unable to. She acknowledged that, had we brought a recording device to record the meeting, she would then have also recorded the meeting. We could only assume that she only intended to record the meeting as a purely defensive gesture, and not as a productive or constructive gesture. The Minutes state “the District did not agree to record as it can set an adversarial tone to the meeting.” But the school district had no problem threatening to have its legal counsel present at the meeting, a practice that is strongly discouraged because of the adversarial and intimidating tone it can set to a meeting.
• We, the parents, did in fact object to the agenda that the school district had unilaterally drafted for the meeting. This meeting was to finally be, after months of unresponsiveness from the school district, our very first opportunity to be heard. The agenda set forth that we would be going over the Assessment Reports, proposed goals, and proposed IEP. We, the parents, had already come to the conclusion before the meeting that we were going to decline preschool placement for Finnian, and the only service we might be interested in would be speech therapy. It therefore seemed pointless and unproductive to adhere to an agenda that stated we would be reviewing all of the reports, goals, etc. The agenda also left no room for anything at all that the parents might wish to discuss. So yes, we objected to the school district’s agenda and expressed that we had brought an outline of topics we wished to cover in the meeting. The school district personnel were extremely resistant to this, and to straying from its own agenda at all. The Minutes state that we were “disrespectful of staff,” without any specific example or explanation. We object to this characterization; we do not feel that we were in any way disrespectful, unless standing up for our own rights and interests is considered “disrespectful.”
• You called a break at this point and temporarily dismissed everyone from the room with the exception of yourself, [Coordinator], [principal], and us. During the next thirty-five minutes (according to your records), we were finally able to bring to light in person the concerns we’ve expressed repeatedly in writing to no avail – namely:
o The school district’s failure to begin the transition process in Finnian’s case by the time he was two years and nine months old – or by April 2011 – as mandated by IDEA; this despite the fact that our Regional Center Service Coordinator began the transition process way back in January 2011 by sending the school district the appropriate paperwork. We did not finally hear from the school district to schedule a transition meeting until late May, and the transition meeting was finally scheduled for June 3 – barely more than a month before Finnian’s third birthday.
o Because of this initial failure on the part of the school district, the transition process was carried out in an extremely rushed manner, with multiple assessments of Finnian taking place by multiple people simultaneously. This was stressful, upsetting, and could not possible result in an accurate picture of Finnian.
o Because of the severe time crunch the school district placed itself under, in the end, the school district found it necessary to develop an IEP for Finnian without the parents’ input, and to hold the initial IEP meeting without the parents’ presence or participation, despite numerous pleas and objections from the parents.
o And again, we have repeatedly expressed the above concerns in writing, and the school district has repeatedly failed and refused to ever address or acknowledge a single concern. This in itself, too, is a concern.
• During this part of the discussion, Mr. Morguess asked you, “Where does the buck stop?” You replied, “I don’t know where the buck stops.” Eventually, you did acknowledge our frustration, and admitted that this all happened because the school district became very backlogged with IEPs around the time of Finn’s third birthday. Despite the fact, however, that you, [principal], and we spent thirty-five minutes discussing these issues, none of the content of this discussion is noted in the Minutes.
• You note in the Minutes that “The Coordinator requested to be excused from the meeting due to the parents’ continual disrespectful and demeaning remarks.” We object to this characterization. [Coodinator] has never made an effort to establish a positive rapport with us; she is continually condescending to us, she has refused over and over again to address any of our concerns or to have someone qualified address our concerns, she has repeatedly misquoted us in letters, recast conversations, omitted important information from “confirming” correspondence, and been generally argumentative with us. The tension between [coordinator] and us was well established when we went into that meeting on Wednesday, and throughout the meeting she continued to sneer and smirk at us (but, unfortunately, facial expressions wouldn’t be reflected in the Minutes, would they?). You and [principal] both made a point of telling us how much you “adore” [coordinator], and how “fabulous” she is at her job; this was not only inappropriate, but also completely irrelevant. It doesn’t matter how she might get along with you or with other families – she doesn’t get along with us. We were neither disrespectful nor demeaning to her or anyone at that meeting – we were understandably upset and frustrated.
It is highly doubtful that we will ever go into a meeting with the school district in the future without both a tape recorder and an advocate, at the very least. Again, there seems to be no interest on the part of the school district in a collaborative effort, and we are left feeling like it is we against you. And who gets lost in all of this? Finnian.
We appreciate your determining [SLP’s] ability to take on Finn for speech therapy at Beechwood. We are interested in pursuing this, but need to know whether the availability in her schedule would work for us. Please let us know how we should proceed with this.
Thank you.
Lisa & Michael Morguess
cc: [principal] (via email)
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.
The end.
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:
Two things stood out glaringly to me: that they plan to have TEN people there (on their side), and that one of those people will be the school district’s attorney. When we received the initial notice of IEP way back in June, we were put on notice that the district planned to have its attorney present at the IEP, and it pissed me off then. But things had already reached such an adversarial tone by then that it almost wasn’t surprising. The fact that they now still plan on having their attorney present tells me that they still plan on our relationship being adversarial and not collaborative.I was furious when we got this a couple days ago. We sent the Program Coordinator an email expressing our objection to the district’s intent to have its legal counsel present at the meeting and that we don’t want, nor is it necessary, to have anyone present at the meeting who doesn’t have direct knowledge about Finnian and input about his educational placement.
So today we got a phone call from Ms. Program Coordinator. Michael took the call, and unfortunately, I only got his side of the call (I kept telling him to put her on speaker phone but he wouldn’t because I was so riled). Apparently she called to address our objection to the district having its attorney present at the upcoming meeting. She told Michael that they plan to have their attorney present because we’ve raised “legal concerns” – specifically, we’ve asked her for the code section that mandates an initial IEP meeting to be held by a child’s third birthday – this in direct response to her telling us over and over that the law mandates that the initial IEP be held by the child’s third birthday. She’s never produced such code section, and frankly, we’ve never found on our own a specific code section that states that an initial IEP “must” be held by a child’s third birthday (it seems to be more of a guideline than anything else; in any event, this is the whole reason the district held Finn’s initial IEP meeting without us – because the date they provided us with was not feasible for us and they were more concerned with holding the meeting by his third birthday than with having us, his parents, present at said meeting.
Anyway, so that’s the gist of our “legal” concerns – a request for a code section that backs up what she’s been insisting to us is the law. And that, apparently, justifies the district having its attorney present at the meeting.
She told Michael during their phone call that they would like to keep the discussion at the upcoming meeting limited to matters directly pertaining to Finn’s education. Michael told her that we do plan on bringing up concerns that we’ve brought up repeatedly in writing over the last several months which have never been addressed or acknowledged by the school district. She said if we want to discuss our concerns, we need to arrange a separate meeting with her and the Director. Really? Really?!?
She also told Michael that, “Frankly, Mr. Morguess, the Assessment Team is intimidated. Doesn’t that concern you?” Is she fucking kidding? They are intimidated? Michael told her, “No, that’s really not my concern. Wouldn’t you think that we might be intimidated, seeing that it will be the two of us opposite ten of you, including your attorney? Doesn’t that concern you?” Know what she said? “No, it doesn’t concern me. You don’t strike me as someone who would be intimidated.”
My level of dumbfoundedness and frustration and pure, unadulterated anger, continues to rise. This meeting next week? It’s not going to go well.
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.
The psychologist spoke to us as if Finn’s imminent attendance in this program is a given, and when I mentioned that we’re still not sure what we’re going to do and that we may even wait another year to put him in (any) preschool, we got the whole speech about how important early intervention is. “The earlier you start addressing their issues, the more benefit.” Blah blah blah.
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:
Dear _________:
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.
Sincerely,
***
We also have an opportunity to meet with that former Director of a local SELPA this weekend. Will update . . .
Life As I Know It 