Archive | September, 2011

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) 

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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.

‘Tards

Following is a conversation that took place on Facebook, apparently yesterday, between my friend Caryl and a couple other people (I’ve copied and pasted an excerpt of the convo, and deleted last names):

Brandon – Even worse are the tards that think they will ever charge to be on facebook.

4 hours ago · Like

Kristie – No shit!

3 hours ago · Like

Caryl – Sorry Kris, You know I love ya but I’ve got to call out your friend Brandon. Using the word “tards” show ignorance and it is really mean. I love someone who is not the same as everyone else and struggles to learn. He is not a “tard.” He is a lovely person who has learning difficulty. So give it a rest Brandon.

2 hours ago · Like

Kristie – Ahh he is a collage grad. I’m not worried bout him, he can handle his own..

about an hour ago · Like

Brandon – Someone’s a little uptight. It’s facebook, why don’t YOU give it a rest. I didn’t stand up in front of a special ed. class and call them retards. I was talking about stupid people with full capabilities and if you can’t handle that it is part of the vernacular of society currently you’re the one with a problem. I’m guessing that you weren’t a fan of Tropic Thunder.

about an hour ago · Like

Kristie – I thought tards was better then I wanted to say.. haha

about an hour ago · Like

Caryl – Retard is as insulting as using a racial slur. You can insult me all you want Brandon. Using that word makes you look like an ignorant ass. Nigger used to be part of the “vernacular of society,” whatever the fuck that means. You see, I am not a goody two-shoes. I just hate ignorance.

a few seconds ago · Like

You know, it just hurts.  And the rationalizations people come up with – really, they’re so predictable.  It’s either the Freedom of Speech argument, or the “I didn’t mean it like that” argument, or the “I didn’t say it to an actual retard, so what’s the problem?” argument.  This guy’s argument being a variation of the latter.

See, here’s the problem, Brandon – here’s maybe what you’re just not getting:  while you may not be using that word “in front of a special ed class,” what you are doing is comparing what you perceive to be the stupidity of “people with full capabilities” to the people with less than full capabilities.  You are making an insulting, derogatory, mean-spirited comparison: “You, person with full capabilities, are as stupid as people with disabilities!”  HA!  HA!  HA!  So funny!  It’s so clever and witty to make people who are different, who have cognitive challenges they are blameless for and powerless to not have, who will likely spend the vast majority of their lives working their asses off to try to compensate for their differences and challenges, the butt of your jokes!  And it definitely shows your intellectual superiority!

I don’t know this Brandon or this Kristie.  My friend Caryl forwarded the conversation to me because she was so upset about it.  I wish I could just blow this stuff off.  But it’s just another reminder that, by and large, the world still sees my son and people like him as less than, as nothing more than the butt of a joke or the perfect insult to throw around.

It hurts.  Even if you didn’t mean it like that.  Even if you weren’t saying it to my son.  It hurts.

Another Year, Another Little Girls’ Birthday Bash

Today we celebrated Annabelle and Daisy’s 7th birthday (official birthday was a few days ago) and Lilah’s (upcoming) 5th birthday.

My friend/the twins’ teacher, Caryl, came to help.  Thank goodness!

A dozen little girls arrived and were served pizza and fruit for lunch.

This year’s party theme was: Cake Decorating.  Each partygoer got a personalized apron – these were super easy and fun.  I bought the children’s aprons in bulk (5 aprons for $20) at Michael’s and decorated them with iron-on patches (also bought in bulk from Michael’s) and wrote each child’s name in fabric marker.  Easy squeezy!

We started with Sara Lee pound cakes . . .

Each child got her own on a cake board and went to town:

You want some, don’t you?

Mmmmmm.

Yes, we will be picking sprinkles from the floor for the next two years.  That’s okay, it was worth it.

Each culinary artiste got to take her masterpiece home.

And then it was time for the real birthday cake –

Until next year!

And the Winners of the Book Giveaway Are . . .

Fourteen people left comments entering the drawing to win a copy of The Shape of the Eye by George Estreich.

And the three winners, by random drawing, are:

Ladies, please email your mailing information to me at bloggymamaATgmailDOTcom (Crittle, I already have your info 🙂

Thanks to everyone who entered.  If you didn’t win, I hope you’ll still go buy yourself a copy of this wonderful book!

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.

Interview with George Estreich and Book Giveaway

As promised last week, following is my interview with George Estreich, author of The Shape of the Eye.

You may be wondering why, of all the memoirs out there about raising a child with Down syndrome (and I’ve read plenty), I continue to talk about this particular one.  The answer is simple: it’s a very important book.  It’s unique from other books of its kind, which typically tell a familiar story about grief and acceptance.  In The Shape of the Eye, George Estreich not only tells of his own experience raising a child with Down syndrome, but examines how attitudes about Down syndrome have been shaped by history, as well as how attitudes about cultural and ethnic diversity, family, and belonging have been shaped and continue to evolve.  It’s as much a study of humanity as it is a story about one family.

If you haven’t read my review yet, you can read it here.  Leave a comment below with your thoughts regarding the interview, and you’ll be entered to receive one of three copies of The Shape of the Eye I’ll be giving away.  I’ll announce the three winners here on Friday.

***

LM:  In my own experience having a child with Down syndrome, I have found that the landscape in the parenting-a-child-with-Down-syndrome community tends to be predominantly Christian, and so there tends to be a certain belief system in place for these parents that their having a child with Down syndrome was the result of some kind of purposeful divinity.  I got the sense from your book that you and your wife have a more secular belief-system.  What are your thoughts on people attaching religious meaning to having a child with Down syndrome?

GE:  I don’t really have an opinion about religion and parenting per se. People raise children with the values they have, which are a mix of what they were raised with and what they’ve discovered along the way. The real challenge is learning how to draw strength from those values while facing a new and unexpected situation.

I don’t know if there’s data out there on who we are–“we” being the parents of children with Down syndrome. But since there are around 400,000 people with Down syndrome in the United States right now, and since trisomies occur at random, I assume we’re a fairly diverse group. One of my hopes is for that diversity to be recognized more widely.

LM:  I know your daughter Laura has an older sister, Ellie.  What kind of relationship do the two of them share?  Can you talk about some of the unique issues that older siblings tend to have concerning having a younger sibling with special needs?

GE:  Ellie and Laura are five years apart. I think of Laura as being like Prometheus, who stole fire from the gods: Laura worships Ellie but also wants to take stuff from Ellie’s room. As I wrote in the book, their relationship seems perfectly normal to me.

I’m hesitant to speculate on the issues, though, because it’s not something I’ve done research on. For anyone who’s interested, I think a good starting point is the Sibling Resource List at ndss.org.

LM:  What are your thoughts on prenatal screenings?  Do you think they have real value in helping parents-to-be prepare for contingencies, or do you think there is a hidden agenda to eliminate “defective” babies?

GE:  The short answers first: yes to the first question, no to the second. But because this question raises a number of difficult issues, and because this is the minefield of minefields, I’m going to elaborate–and, to some extent, question the question.

I think there’s no question that prenatal diagnosis can be of use to expectant parents. Whether it is, I think, depends a lot on the parents–and on the doctors who help them make sense of the information the test reveals.

The second question is more complicated for me. Strictly speaking, expectant mothers do use prenatal diagnosis to make decisions about fetuses with Down syndrome. That intention isn’t hidden, though: it’s one of the reasons, probably the main reason, that women use prenatal diagnosis. Their decisions, however, may not be based on an assumption of “defectiveness,” but on other criteria.

As for an “agenda”–that implies something beyond the individual level. In the past, screening programs have been openly justified in terms of eliminating defect, so I’m not sure if anything is hidden there.

I come at this question from an odd angle. My general feeling is that people with Down syndrome are obscured by the issues they remind us of. Too often, we don’t see individuals; we only see big questions about education, or eugenics, or prenatal diagnosis. So I try to treat these questions as separate from our experience of Laura. On a practical level, we made our own choice–which was not to test–but we don’t use that fact to recommend a course of action for others. Lives are too diverse.

To me, the core issue is the way Down syndrome is understood: not whether prenatal tests should exist or be available (because they will, in increasingly accurate and noninvasive forms), but what conception of Down syndrome accompanies the diagnosis. My hope is that explanations of Down syndrome will go beyond the merely clinical–the list of possibilities and bad outcomes, footnoted “happy”–and do justice to the real and complex challenges and joys of raising an individual child.

LM:  You did a lot of research about John Langdon Down and the treatment of people with Down syndrome from a historical standpoint.  It was only a few decades ago that babies born with Down syndrome were almost always placed in institutions.  What happened to change that trend?  In other parts of the world, babies born with Down syndrome are still routinely placed in orphanages/institutions.  What do you think it will take to change that?

GE:  I think the short answer is that the change was driven by independent-minded parents, who refused to institutionalize their children even when this was the standard recommendation. In addition, the disability rights movement–inspired by the civil rights movement–won legal protections and rights for the disabled, such as the right to attend school. The legislation that guarantees Laura a free, appropriate public education (that’s FAPE, of course, to you IEP veterans) didn’t come along until I was in middle school. Geraldo Rivera’s exposé of Willowbrook, an asylum with unspeakably wretched conditions, didn’t hurt either.

To raise a child at home, some level of societal support has to exist. If it’s simply not financially viable–if, for example, there’s no daycare to take on a disabled kid, or no right to go to school–then raising a disabled child at home isn’t really a meaningful choice.

I’ve only recently begun to learn anything about these issues on an international level (for a great blog on this topic, see advocatemama.com), so I’m hesitant to offer more than speculation. But I think that, as in the U.S., there has to be some combination of a shift in social attitudes, an increase in social support, and a critical mass of parents to drive the change. It’s also likely that where conditions are horrific, media images will accelerate or catalyze change.

LM:  Sometimes I feel utterly humbled by watching my son, Finn, grow and make developmental strides, however slowly.  In hindsight, I realize that, though I really knew next to nothing about Down syndrome when he was born, I definitely had some preconceived notions about what he would and wouldn’t be able to do.  What are some things you thought Laura would never be able to do that she is now actually able to do?  Are there things that you had hoped she would master by now that she hasn’t?  What feelings does that elicit for you as a parent?

GE:  When Laura was born, I didn’t know a lot about Down syndrome. Basically nothing, actually. So I didn’t have many specific notions about what she could and couldn’t do. I will say that in the early days, my expectations were probably too extreme at both ends. I sort of got the impression that if I worked really hard, Laura would graduate with a regular high school diploma, and if I didn’t work hard enough, she would just not progress at all. The truth has been gentler and somewhere in the middle. Every child is different–that’s just as true for kids with Down syndrome as for typically developing kids–and so there was always more hope than I had when I was hopeless, and always a reasonable limit to what was going to happen through nurture. The trick is to take advantage of your child’s strengths, while being realistic about achievement.

“Realistic,” by the way, is often used to imply “unable”–as in, “let’s be realistic about what she can do.” I’m talking about something different: a positive realism that shoots as high as possible. So, no to calculus, but yes to arithmetic.

As for Laura’s achievements, they all make me proud, they all surprise me on some level, and then they don’t surprise me either. But I’m more happy than I can say to see her reading. Even when she complains about how hard it is.

LM:  In your book, you talk about the conflicts between you and your mother.  Has she read your book?  What has her response been?

GE:  My mom read the whole manuscript after editing was finished. She wrote me an extraordinarily generous letter about it, and I think she has bought more copies than anyone else.

Writing about family is difficult. My goal was always to be honest, but not vindictive. If I was looking to the past, it was in hopes of moving forward, not settling scores.

Laura’s arrival was a shock, and we were all reeling from it in different ways. As the book shows, it took a long time to sort out–and as I write in the book, I worried during the writing that the book would make things worse. I feel fortunate that that hasn’t been the case.

LM:  Being a stay-at-home-dad is still a relatively rare thing, even in our so-called “progressive” society.  Do you feel there is a stigma associated with this arrangement?  Have you personally experienced less-than-supportive attitudes about it?

GE:  I haven’t personally experienced stigma, or even less-than-supportive attitudes. As Theresa, my wife, says, the real problem is isolation and not stigma–and that isn’t particular to at-home dads.

Of course, I’ve been very careful to live in left-leaning college towns where everyone thinks you’re extra sensitive just for doing what women usually do. Perhaps in other towns I would have to wear a scarlet “D,” but I don’t think so.

LM:  What are you writing now?  Any plans for another book?

I do plan to write another book–more than one, I hope!–but right now, my main work is promoting The Shape of the Eye. Writing a book is only the beginning: if it doesn’t get into the hands of readers, it effectively doesn’t exist. That said, I’ve been working on some short essays about life in Australia, where my family and I spent a year on sabbatical. Two have been published in online journals (Eureka Street, an Australian journal, and Superstition Review.)

LM:  What are your hopes for Laura’s future?  Do you feel those hopes are realistic?

GE:  My hopes are for Laura to have friends, feel satisfied and accomplished, and to live as independently as she can. I think these are realistic hopes–though the world is changing so fast, that the reality is hard to envision. Services for adults are underfunded, and our current mania for cost-cutting will impact the disabled first.

LM:  If you could tell a new parent facing a diagnosis of Down syndrome for their child anything, what would it be?

GE:  First off, I’d say: congratulations on your new baby! Pat Hill, our first Early Intervention coordinator, told me that when I called her to ask about services. Her saying so really helped to put things in perspective.

Second, I’d probably ask how things were going. Because Down syndrome is incredibly variable, and because every family is different, I’d try not to say much without learning about the particular child and the family. And in any case, I’m neither a doctor nor a licensed therapist, so I’m hesitant to dispense advice.

That said, I’d share one piece of advice based on my own experience: I wouldn’t spend too much time looking things up. Even good information about Down syndrome tends to emphasize what can go wrong. The fact is that every child is different, and so there’s no use worrying about leukemia, or torticollis, or intestinal atresia, if your child doesn’t have those things. To the extent that you focus on problems, stick with the ones your child actually has–and remember that those will only be part of your experience.

LM:  What is the most important message you would like to get across to the general public concerning Down syndrome, disabilities, and differences among people?

GE:  One reason I wrote my book was to try, in a tiny way, to nudge the common sense of Down syndrome in a different direction. Even the positive perceptions of people with Down syndrome tend to emphasize childlike qualities. I’d like to broaden that positive view to include a vision of ordinary adult citizenship. Unless we begin as a society to imagine people with Down syndrome as adults–adults who want to work and live independently and thrive–then we won’t provide them the support they need to do so.

***

Many thanks to George Estreich who graciously and patiently answered the interview questions I sent to him!

In Praise of a Teacher

My friend Caryl is a teacher.  She taught first grade for several years, and first grade has been her passion, because first grade is when chilluns generally get their reading chops, and she has a Master’s degree in literacy.  She was Joey’s first grade teacher three years ago, and Annabelle and Daisy’s first grade teacher last year.  But then the powers-that-be decided to do a big teacher shuffle, and so this year Caryl is teaching a second-third grade combo.  Lucky for us, that means she’s once again Annabelle and Daisy’s teacher.  Not so lucky for Caryl, though, as it means she’s teaching two different curriculums.

I have to say that before I got to know Caryl, I never really got to know any of my kids’ teachers very well, and I certainly had no idea just how hard teachers work.  I think on some level, I figured that certain people decided to become teachers because of the cushy hours – you know, working 8:00 to 3:00, and all those days off – a week off in the spring, two weeks off in the winter, not to mention three whole months off during the summer!  Sheesh, who could ask for a better deal?

Now I know the truth.  Now I know that during the school year, Caryl doesn’t go home when the kids go home.  She stays there at school for a few more hours usually, and then takes work home with her as well – grading papers, preparing lesson plans and the like.  She arrives at school an hour or two before the kids arrive in the morning to get everything ready for the day ahead.  She willingly keeps kids in her classroom after school – including her former students – to help with homework and give pep talks.  Not to mention summer – she’s working full days weeks before the kids return to school, getting the classroom and lesson plans and schedules ready.  And I’ll never forget last year when Daisy was sick for a week, too sick to go to school, and Caryl came to the house just to go over lessons with Daisy so she wouldn’t fall too far behind.  She’s often in attendance at a student’s (or former student’s) birthday party or Little League game.  She’s utterly dedicated.  She commands the respect of the kids in her class, but she’s always there with a loving hug.

This afternoon Annabelle had to stay after school and redo her homework for the week, because she didn’t do her Personal Best (Personal Best is probably the number one value Caryl tries to instill in her students).  When I finally went to pick Annabelle up, the school had mostly emptied out.  I asked Caryl if she’d be on her way home now, and she said no, she’d likely be there until 7:30 or so tonight.  Friday afternoon, you’d think she’d have a fire under her to get out and shake off the week, but no, she still had work to do.  And she’ll be in over the weekend, too.

I am humbled by and thankful for her devotion and hard work.

Book Review: The Shape of the Eye

The Shape of the Eye by George Estreich

A few weeks ago, in my email inbox was an email from a man I’d never heard of before, asking me if I would be willing to read a book he wrote and recently had published, and to write a review on Book Lust. I still don’t know how he stumbled upon my book blog, and I was flattered that a bona fide author would think that anything I had to say about a book might actually carry some weight with anyone. Without hesitation, I agreed to read and review his book because I was flattered to be asked, because I like the idea of having any sort of contact with an actual author (being a wannabe writer myself), but mostly because the subject matter of his book is near and dear to me.

I have read numerous memoirs about having a child with Down syndrome. The Shape of the Eye is, hands down, the best one I’ve read . . . .

To see my complete review, click here.

I’ve been fortunate enough to have the opportunity to interview the author of this wonderful book.  I will be posting that interview here next week, and will be offering the opportunity for three readers to receive a free copy of The Shape of the Eye, so please check back!