I asked for help with my disabled children and the special education program administrator called me “Crazy”.
Alternate Title: What does the Portland Public Schools special education administrative staff really think of parents of children who need their help?
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Written: Wednesday, August 22, 2018.
[You might want to sit down with a cup of coffee to read this one!]
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Yesterday we rented a car for a week. We don’t usually have a car but this week we have a few important appointments that we couldn’t do without it. Early this morning I drove my husband to a meeting in the hills outside of Portland. On the way down the hill, after I dropped him off, I got a call on my cell. Since I was driving I answered it on speaker phone.
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The call was from Portland Public Schools, I had no idea who would be calling but I am <sigh—once again/still> trying to get appropriate placements and special education accommodations for my two younger kiddos (each of whom has different disabilities and an IEP.)
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Last week I had called Llewellyn Elementary school and spoke to the principal about placing Charlie (our 10 year old) there. I told him that I really want/need to work it out for Charlie to go to that school, since it is our neighborhood school (which, I understand we have a legal right to send him too), and also since we are car-free. The main reason to send Charlie to any school is for socialization opportunities – so it is important that he attend the neighborhood school if the intention is for him to make friends he would have actually an opportunity to play with/get to know. I emphasized in that call that an out-of-neighborhood placement was not something we would consider. We had tried that two years ago — nearly two hours a day of commute to a far away school via a Special Needs bus was just not a good fit for an 8 year old kid with mental health challenges!
The call was from Portland Public Schools, I had no idea who would be calling but I am <sigh—once again/still> trying to get appropriate placements and special education accommodations for my two younger kiddos (each of whom has different disabilities and an IEP.)
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Last week I had called Llewellyn Elementary school and spoke to the principal about placing Charlie (our 10 year old) there. I told him that I really want/need to work it out for Charlie to go to that school, since it is our neighborhood school (which, I understand we have a legal right to send him too), and also since we are car-free. The main reason to send Charlie to any school is for socialization opportunities – so it is important that he attend the neighborhood school if the intention is for him to make friends he would have actually an opportunity to play with/get to know. I emphasized in that call that an out-of-neighborhood placement was not something we would consider. We had tried that two years ago — nearly two hours a day of commute to a far away school via a Special Needs bus was just not a good fit for an 8 year old kid with mental health challenges!
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In our conversation last week, Joe (the principal) said that the person I needed to speak with was Maria Gianotti the PPS Special Education Academic Programs Administrator for our section of the district. Joe said she would make sure that things were handled appropriately this time (after pretty much 6 straight years of not getting appropriate accommodations for our three youngest children!) and that I should just give her a call.
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Given how busy I have been recently, I hadn’t had a chance to call her yet; the call this morning was Maria calling me.
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When I picked up the phone I explained to her that I was driving and would have her on speaker phone; she told me she needed to add someone to the call [Lauraine], and that she was putting the call on speaker on her end too. Early in the call I told her I was having a difficult morning, and I apologized if I was sounding overly upset or grumpy. She asked if I wanted to take the call later and I said “No”- that I would be fine taking the call now (since I had a rare moment and was alone in the car and could talk to her without interruption from my kiddos!)
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It was 9:08 a.m. and the call lasted for 13 minutes.
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In the call, I went over all the considerations for both of my younger kids; I wanted to make sure to get all the details in, so I am sure I spoke at a brisk pace (as I usually do).
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I told her of the abuse (that we documented) that happened at Roseway Heights when Charlie was 8 years old — and was left with a para who was not assigned to him, and the para sat on him and hurt him [when physical restraintwas never part of any plan — and her “techniques” were not actual techniques, but just straight-up abuse). He should never have been left alone with a unfamiliar para. Period. But this particular para had a history of being dismissive of Charlie, and also of hurting him even though she was not assigned to him. I also told Maria and Lauraine how we reported that incident to the school — and in their internal investigation they determined it was “not a violation of any kind”, and how I regretted not having reported the para to CPS at the time!
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I explained these things to emphasize that we don’t want anything like this happening to him ever again.
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In the call, I went over all the considerations for both of my younger kids; I wanted to make sure to get all the details in, so I am sure I spoke at a brisk pace (as I usually do).
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I told her of the abuse (that we documented) that happened at Roseway Heights when Charlie was 8 years old — and was left with a para who was not assigned to him, and the para sat on him and hurt him [when physical restraintwas never part of any plan — and her “techniques” were not actual techniques, but just straight-up abuse). He should never have been left alone with a unfamiliar para. Period. But this particular para had a history of being dismissive of Charlie, and also of hurting him even though she was not assigned to him. I also told Maria and Lauraine how we reported that incident to the school — and in their internal investigation they determined it was “not a violation of any kind”, and how I regretted not having reported the para to CPS at the time!
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I explained these things to emphasize that we don’t want anything like this happening to him ever again.
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I also explained that the best chance for success for my kiddo would be if I can volunteer in the classroom on a daily basis. Given the many traumas he has experienced in school settings I know that if I cannot be present for a transition he’ll more than likely end up with a full-blown case of “school refusal” in a day or two of attending a new school.
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I told them how last year he went to a private school for part of the year and it had a “loose” curriculum and that did not work well for him, because he actually really desires structure and wants to learn subjects in a classroom and to have structured and organized opportunities to play with other kids.
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I also emphasized the importance of attendance in the neighborhood school (in this call with Maria) and Charlie’s need to build friendships and strengthen his social interactions (recapping the conversation I had had previously with the principal.) I suggested that a half-day schedule might work best for him, especially if it could include activities he does well at – like physical education, art and math. Half day schedules had been successful with two of our older sons too.
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I told them how last year he went to a private school for part of the year and it had a “loose” curriculum and that did not work well for him, because he actually really desires structure and wants to learn subjects in a classroom and to have structured and organized opportunities to play with other kids.
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I also emphasized the importance of attendance in the neighborhood school (in this call with Maria) and Charlie’s need to build friendships and strengthen his social interactions (recapping the conversation I had had previously with the principal.) I suggested that a half-day schedule might work best for him, especially if it could include activities he does well at – like physical education, art and math. Half day schedules had been successful with two of our older sons too.
Maria responded that I need to first enroll him in the school and then we need to re-do his IEP to see what placement would work and we “should do that ASAP, so he can get a placement ASAP”. She also indicated (as everyone here has) that it is quite unusual and “difficult” for a parent to assist or volunteer in the classroom (and that it was unlikely that it would be permitted), and I reiterated that a reintroduction into a structured school environment just won’t work without my active participation.
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With Charlie we have seen that method (excluding parents from the classroom starting with day one) fail in three separate schools, and we know from much heartbreaking experience that just will not work in his case (the outcome of not having me there as a support at least initially is obvious and predictable, given his particular diagnosis.)
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Since Maria had emphasized that she was the Special Ed Administrator for our “whole area” (encompassing the middle schools and high school as well as the elementary school), I then brought up the challenges we are having with my 13-year-old son, Avi.
Since Maria had emphasized that she was the Special Ed Administrator for our “whole area” (encompassing the middle schools and high school as well as the elementary school), I then brought up the challenges we are having with my 13-year-old son, Avi.
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I got emotional talking about what happened to him last year – and the fact that he has been denied FAPE for the past 6 years (that the system has completely failed him; that the district had (for years) has refused to put appropriate accommodations in his IEP — and even that his existing IEP as written has not been honored or followed.) I specifically mentioned how Jeff Brown, the Program Director for our area historically really appeared to personally be behind all of the efforts thwarting the allocation of appropriate services for Avi.
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I explained how Avi has a documented brain injury, but as it was explained to me by school SPED staff, because in his original medical paperwork the word “traumatic” did did not literally appear right in front of the words “brain injury”, the district is refusing to give him appropriate accommodations for his disabilities — as that is the only exact wording that they understand as a medical diagnosis conferring bureaucratic legitimacy to his diagnosis/requiring them to recognize his diagnosis as valid and thereby legally compelling them to appropriately accommodate his needs.
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I explained that like a scene out of some sort of bleak existential farce, the PPS forms specifically have the term “traumatic brain injury” explicitly worded in that order on them, and so last year the IEP team asserted that as a result of that medical distinction they do not need to treat his condition as a brain injury, because their interpretation of the paperwork is that Avi only has a “brain injury” and not a “traumatic brain injury”(!)
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I explained to Maria that we had sparred over this quite a bit with Jeff Brown over the years and with Marilyn (the VP at Sellwood Middle School) last year, and had gotten nowhere.
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[I often get emotional when I get into the details about the fight we have had to try (unsuccessfully) to get the district to comply with FAPE and give Avi what he needs, and I started to cry a bit at this point in the call.]
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I explained how the “straw that broke the camel’s back” last year was when Avi reported to us that his science teacher (despite being a generally great and beloved teacher) actually “accidentally” made fun of him (in front of the entire class) for the fact that he could not read the writing on the board at “normal” speed.
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I explained to the ladies on the call that, despite his overall high IQ [130], as a result of Avi’straumatic brain injury, his visual memory is in the 4th percentile (documented in the results of his thorough neuropsychological evaluation in his medical paperwork) — and the teacher asking him to read hand-written words on the board in real time in front of the class could be compared to a teacher asking blind child to stand up and read the blackboard — completely insensitive and inappropriate.
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I explained that after that incident (which was towards the end of the school year last year), we kept Avi out of school, because the kids in that class took a cue from the science teacher and started making fun of him as well. This was also the third incident that year (the 2017/2018 school year, 7th grade for Avi) in which a teacher demonstrated a staggering lack of understanding regarding his brain injury.
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Other incidents were with a history teacher and with a music teacher (each genuinely wonderful teachers in all other respects when working with more neurotypical kids!) I told Maria how the history teacher had repeated the refrain we have heard so many times (he was telling Avi to“just try harder”) — and how insensitive and preposterous that was (and how that represented a complete lack of understanding of his medical diagnosis and related educational needs).
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I emphasized (again), you wouldn’t tell a blind student to “try harder” to see —you would give them appropriate auditory learning tools and aides (tools which have been completely denied Avi in this process) and focus on classes where auditory learning is emphasized over learning through written language.
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Finally I told Maria and Lauraine that I also took actions to support the teachers in better understanding of Avi’s issues: I sent an e-mail to the SPED team for Avi at Sellwood (in June) that had information about a free training for caregivers and teachers to better understand how to work with children with brain injuries [this was a program being offered by the State for free]; I never received any response about that training.
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There was a lot of content in this phone call. I shared a LOT of information in a relatively short amount of time — but I have learned though experience (confirmed by many other parents as well) that that you need to repeat these things at each chance in the IEP process or they tend to be literally completely ignored [in practice, they are often ignored anyway!]
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Towards the end of the call, I even told her that we had been so frustrated with the system to date that we were even exploring possible educational options in foreign countries at this point (including The Netherlands and Finland). Because the problem seems to primarily the district’s inability to adhere to the federal laws on the subject — and I have not yet found anywhere else in the U.S. where parents actually say it is that much better (without paying $20,000 to $30,000 a year for private school).
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Maria indicated she was taking notes on our call, and that this “gave her a good picture of things and we would review most of this in the IEP”. She was generally polite and thanked me for the information, and we closed the call with the understanding that I would call the school to enroll Charlie.
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She said goodbye.
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I said goodbye.
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I was on speakerphone.
I was on speakerphone.
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I was driving on a twisty road in the Portland hills.
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I didn’t reach up to press the button to hang up the phone, because I assumed she would hang up the phone and that would disconnect our call.
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Then I heard Maria say to Lauraine: “Oh my god, she’s CRAZY!“
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She did not realize I was still on the phone.
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I said: “I heard that”.
I was driving on a twisty road in the Portland hills.
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I didn’t reach up to press the button to hang up the phone, because I assumed she would hang up the phone and that would disconnect our call.
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Then I heard Maria say to Lauraine: “Oh my god, she’s CRAZY!“
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She did not realize I was still on the phone.
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I said: “I heard that”.
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There was an audible gasp on the other end — and then I hung up.
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I was stunned. Absolutely stunned… and hurt… and very sad…really quite overwhelmed with dismay.
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I was stunned. Absolutely stunned… and hurt… and very sad…really quite overwhelmed with dismay.
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For her to have that reaction after I poured my heart out to her about my children’s needs and the challenges they have faced and the failures of the system so far… really exemplifies everything I have always felt was wrong with PPS.
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Principal Joe had said “tell her everything; she’s the one who is going to be able to help you…she’s amazing–I promise!” And so I did.
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While I am decidedly not crazy, I must say that if anything has nearly driven me so, it is the solid wall of resistance we have gotten from Portland Public Schools over everything… from the lead-in-the-water situation that I brought to their attention starting in 2009 (#Ahem, they called me “crazy” for that too… and look how that turned out!), to their blatant refusal to acknowledge Avi’s brain injury, even though it has been thoroughly documented in writing by medical experts.
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In my experience, at no point in the PPS Machine, have they shown that they have the interest of the children truly at heart. This does not mean there are not excellent teachers (who are overworked and underpaid of course) – it just means that the entire system is brokenand being run by people who don’t get what it is to care for children, and who especially don’t get what is required to work with disabled children and their families.
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Maria called back at 9:22 – I was driving, and stunned, I didn’t answer.
She called back again (less than a minute later) – I did not answer.
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She left the following voice message:
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Maria called back at 9:22 – I was driving, and stunned, I didn’t answer.
She called back again (less than a minute later) – I did not answer.
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She left the following voice message:
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Tamara I need to apologize. That was inappropriate and you have my sincerest apologies. Um, I was taking a lot of information in and, um I myself have <inaudible> today, and I hope we can rebuild the situation. I sincerely apologize and, um, I really apologize. I – there’s nothing more I can say. What I said was wrong and, um, I need to apologize. Thank you. [See voicemail transcript image below.]
She then sent the following e-mail:
To which I responded:
I find it ESPECIALLY DISTURBING that she would use the word “Crazy”, given her position and the fact that we were primarily discussing the needs of my youngest son Charlie who has a mental illness diagnosis. How is that even in her vocabulary in a professional setting. [And even though she thought she had hung up the call, this was still a “professional setting” – these are words she spoke to her co-worker in her place of business.] It was off-the-charts inappropriate.
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This is a VERY personal concern, but I wrote it up both for “the record” (I will be e-mailing this link to the team and to an attorney) and so other parents know this sort of thing is happening (on top of everything else we have been through with the lack of accommodations from the SPED team).
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This is a VERY personal concern, but I wrote it up both for “the record” (I will be e-mailing this link to the team and to an attorney) and so other parents know this sort of thing is happening (on top of everything else we have been through with the lack of accommodations from the SPED team).
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I am – as always – happy to answer questions!
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Right now, first and foremost, I am working to raise the funds to keep my home so I don’t personally have the funds to hire yet another attorney at the moment; but if someone were to grant a wish and pay attorney Diane Wiscarson the $5,000 retainer we would need to hire her (she’s supposed to be one of the best attorneys in Portland for special education battles against the Portland Public School District!) so we could sue the school district (sooner than later, for appropriate placements and accommodations for my children), I would say we’re sadly ready for that move now (with this incident, after ALL we have been through!)
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Right now, first and foremost, I am working to raise the funds to keep my home so I don’t personally have the funds to hire yet another attorney at the moment; but if someone were to grant a wish and pay attorney Diane Wiscarson the $5,000 retainer we would need to hire her (she’s supposed to be one of the best attorneys in Portland for special education battles against the Portland Public School District!) so we could sue the school district (sooner than later, for appropriate placements and accommodations for my children), I would say we’re sadly ready for that move now (with this incident, after ALL we have been through!)
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Six years ago a PPS special needs mom told me that her son finally got appropriate accomodations when he was 14 years old. I was shocked. My son was 7 at the time. I said “no way” would I stand for that, I would do everything in my power to get him services a.s.a.p. Yet here we are, six years later, just a few month’s from Avi’s 14th birthday. Does the school district even understand the impact this “fight” has on parents? It’s exhausting. They have really designed the system so that parents will give up and eventually stop fighting for what the school district is legally supposed to provide for our children.
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For those not in the city of Portland, Oregon, the general consensus among special needs parents here seems to be that to actually get the accommodations your children need (in the public school system) you actually have to use the services of an attorney.
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Tamara Rubin
#LeadSafeMama
Mother of Disabled Children
Portland, Oregon
#LeadSafeMama
Mother of Disabled Children
Portland, Oregon
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My four sons:
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Just absolutely shocking that a supposed professional would denigrate you in that way. And you know what, people might sound a little “crazy” when they have been through what you already have—and continue to, on top of your work and the professional and personal toll it has taken. My god. Just shocking.
Thank you for commenting, Sabrina.
Tamara, I am a PPS school board member and faculty at PSU in the Department of Special Education. I would love to connect with you. Please email me at jebrown@pps.net
Thank you! I sent you an e-mail.
Hi Tamara, My heart breaks for you.
I have a lot of experience dealing with IEP’s and advocating for my child. The best advise I can give you is to not file a complaint against her-, accept the apology and move on to get what your kid(s) need. She will hopefully become an ally for you now and in the future. If someone calls you crazy…really…who cares. It hurts, but you just love your kids. And I truly know my kids make me crazy.
The Special needs community is truly very small and you will be in it for a long time. With all you have to deal with It sounds like you need an advocate that can navigate the IEP system.
And if you are not active in Special Olympics yet, I recommend Special Olympics in your life, you can be an active volunteer and your presence will be always be welcomed. You will be surrounded by compassion and support. Best wishes.
It might be a small community, but it’s a strong one. Nobody should sit and take that. There are many advocates with good hearts and true respect for families. We don’t need arrogant jerks like these.
Thank you.
Sometimes peace works.. all I meant. Good luck Tamira. Move to IL. I Have had a fight. But lots of support from the special needs community and our incredible school district.
Think positive.
I understand! I have been hearing both perspectives today!
This is awful and familiar. I myself could talk until I’m blue in the face and nothing happens. I have only been able to get anything done by asking mental health professionals to advocate for what my child needs.
Nobody deserves to be treated like that, on so many levels. Don’t let anyone (or Krista) tell you otherwise. There are PLENTY of TRUE advocates out there that would never treat someone that way. Many of the district level special education administrators are worthless and have no true sense of the true student needs in the schools. They are just there to do what is best for PPS. But here are a few diamonds in the rough. You just have to find them. Do not give up on this fight. Our community NEEDS people like you to lead the way and show PPS that their incompetence will no longer be tolerated. Keep up the fight and know that you will likely inspire many others to do the same. At the very least you will show these two bullies that they can’t get away with this behavior any longer, as I guarantee you aren’t the first. You’re just the first who caught them. Don’t give up. We are rooting for you and your family to finally receive the services you morally and legally deserve.
Thank you.
Wow…I really don’t know what else to say. This is incredibly inappropriate. I would bet she only apologized out of fear for her job. Maybe thats the cynic in me.
Have you considered reaching out to local news media? Maybe that’s playing dirty but I think you’re right; this is indicative of a pattern rather than an isolated incident. I’ve heard people talk about recording apps for cell phone calls. It might be something for you to think about if this is how you are going to be treated.
Thank you for commenting! I have so much going on right now I don’t know if I can reach out to the media -although there’s lots of media lurking in my groups and on my e-mail list, so I know they will grab the story if they find it interesting. Right now I am most concerned about finding an appropriate school placement for my two youngest children. It’s Friday. School starts (here in Portland) on Monday. #Sigh – Tamara
Dear Tamara,
I wish I could get back the wasted breath and energy I spent with Jeff Brown. I cannot say I’ve walked in your shoes, as our story was different, but also full of incompetence that was focused on PPS and not our community of children. It is so sad we can’t make them follow the law. We used the same attorney services. You are so right that as parents of special needs kids we just don’t have time or energy because we are focused on the children — as we should be! PPS knows it and takes advantage of that. I sure wish there was a way we could all band together and make them follow the law. I see it as next to impossible since they are not able to do basic things like manage drinking water and keep building ceilings from falling in. Our public is just as guilty, since we can’t seem to muster the leadership and support to properly take care of our schools and our children! I count our family as fortunate that we think we have found some diamonds in the system at the moment and am ever grateful for it. I wish the same for you and your family. My heart goes out to the families that don’t find that, or who don’t have parents who can do what you are doing. I don’t have $5k — but I am with you lady. I gave my testimony to the school board to that end. In our specific experience I ran across a couple moms who had same experiences at our same school/principal/teacher YEARS earlier. I learned that history is allowed to repeat itself in PPS. Your post has inspired me to go back and file the formal complaints. So thank you for that.
Thank you for commenting!
Part of me thinks that in order to do that job well, one has to have been a mother who has BEEN THERE. Clearly, she has not. That was insensitive. But I think she gets that. I think perhaps now you can get what you need from the district. Maybe make nice, and actually take her help. Talk to her and get her to understand what hell parents and students have to go through. Maybe this could end up being a teaching moment for her so that families in her future can benefit. You know what is “crazy”? What is crazy is that so many families even have to GO THROUGH THINGS LIKE THIS with their children. I am so very very sorry to hear of this horrible experience. I hope that your children will now get the help that they need.
Thank you.
Hi Tamara. Thank you for sharing this. My son (high-functioning ASD) is 18 now, and we’re midway through an online high school program. I pulled him out of public school because there were no answers there: poorly trained staff, nearly 100% clueless teachers (with a couple of rare exceptions), budget cuts, ignorance, overwhelm. I work from home, so I can be here if he has questions. Not every family can do that, so I feel lucky, strange as it seems. Thank you for fighting the system, not just for yourself and your family, but for the good you’re doing the families who follow you. <3