“What’s done can’t be undone.” ~William Shakespeare
Done. The four years of feeding Pearlsky gruel … blended pizza, blended bacon cheese burgers, etc. is over, with a whimper. Sort of.
This is all because of the head nurse (I will have a review of the complaint against her soon, the state attorney general has been assured that a decision by the Office of Public Protection will be coming this month). When Pearlsky entered high school the nurse commanded all her food be blended.
I got an email yesterday saying that the teacher will try more normal food with the school nurse there, as well as the director of special education, and who knows who else. Turns out the nurse stayed to see two or three bites and no one else came by. As usual, the emails tell it all …
From the director of special education:
I’ve received the letter from Pearlsky’s doctor. I’ve hand-delivered it to both teachers, although you had kindly sent an attached copy to them. I hand-delivered a copy to the school nurse to ensure that everyone is on the same page with her feeding. I have asked her to come to help the teachers and Pearlsky’s aides see how to safely do this. Do you want us to feed her today or wait for you to come in?
What? No paramedics on standby?
Anyone is welcome to feed Pearlsky anything at any time.
I still have no clue why nursing has any involvement, but that is your call. Keep in mind that the nurses have no idea how to feed Pearlsky and have demanded all along that she not be fed, so their advice on feeding may not be optimal.
I do not think I can make it in today … just to give you an idea (and a bizarre insight into my life), yesterday my girlfriend was in an ER, my son was in the hospital, my sister was in a trauma center and my mom was rushed for oral surgery. Amazingly, all is basically ok, but today is rather full as a result.
So, go for it. It is ok if she coughs a bit at first since she will not be used to any of you feeding her, but she is fine. I always let her smell the food first, just a habit of mine. Try the cheeto’s things … just watch your fingers! If there is any cooking in the classroom, room temperature scrambled eggs, especially with a touch of ketchup, are a favorite. The nannies don’t, but I often tell her something like “You’re going to need to chew this food” …
If you get too nervous, just go for the Pediasure.
Remember, Pearlsky is a lot tougher than you would think. She really is. She has NEVER choked, never not cleared her airway. And is it perfectly ok that she aspirates liquids, not ideal, but not an issue. She is tough in lots of other ways as well … sometimes tougher than I am.
Have fun with it, she does.
I never got a phone call … all must be good. The teacher was on the van when Pearlsky came home since the aide was out. Here is the email I sent out …
Subject: Pearlsky – Alive, where is the apology?
To: Director of Special Education for the high school
As I believe you know, JM fed Pearlsky lunch today, pasta with meat sauce, NOT blended, just cut up. Note that he has NEVER fed Pearlsky typical food before, he actually has minimal experience feeding Pearlsky at all, I have never taught him nor showed him how to feed her. I am told that Pearlsky ate just fine.
No choking, no ambulance, no Heimlich, no medi-vac.
For over four years Pearlsky has been subjected to gruel-like lunches and worse, such as blended chicken-cheese-bacon sandwiches and blended pizza. Disgusting. And this was done for no medical reason at all. This was done without the knowledge or permission of her parents or herself.
Has the head nurse apologized to Pearlsky for subjecting her to this? That is a very serious question. Has anyone apologized to Pearlsky? Certainly, no one has apologized to me for forcing this upon my daughter.
Is there any acceptance of responsibility or accountability for this absurd and disturbing action?
A sincere thank you for your efforts in correcting this absurd behavior of your staff and I look forward to the answers of my questions.
From the director of special education in the high school:
I can’t force anyone to do anything. I can, however, feel glad that with minimal oversight initially from the nurse and using his prior training, the teacher was able to feed Pearlsky and of course everything went fine.
I’ve come into this situation and will continue to everything I can to address issues like this which now seem to have been resolved. The greater issue? The fact that someone somewhere made a decision that you’ve been unaware of and now you rightfully feel that wrong should be righted is something I just can’t address. I can’t undo the past but I can tell you that I would also have been very upset if I were in your situation and I think you brought it to the Assistant Superintendent for Student Services and me and we worked together and fixed it.
On behalf of my staff, I apologize for what happened. I take full responsibility because frankly there isn’t anyone else here to take responsibility. I’m sorry. My staff is sorry. And it was great to hear that all went well today and everyone feels we are now on the right track.
Other than that, I don’t know what else I can do. I run one department, not the school or the district. And on behalf of that department I can only offer the hope that you accept my apology.
So why does this thing have me so incensed? Sometimes I really try to figure out if I am right or wrong when my voracious advocate side comes out. In this case they (well, the head nurse) has really wronged Pearlsky, has taken away her pleasure of eating, for four years. Even now, when it is fixed, I am demanding that she, the head nurse, be taken to task for it. It facinates me that I feel this way, because I am an extremely forgiving person, I do not hold grudges … and there is truly only one person in the world I can say I “hate,” really, one. Not even that prick, Bruce, from elementary school. No, just K. The head nurse.
My response to the director of sped in the high school:
Actually, there are two things you can do.
It has always been a big “bug up my butt” that people do not apologize to Pearlsky, don’t really acknowledge her, never accept responsibility. There was an incident a few years ago where BW, and his office, messed up and it did effect Pearlsky in a major way. He was the previous headmaster, and basically did not work well with the Sped department, and especially the parents. His idea of needing and IEP, the “level of disability” that determines “special need” was different than many others. He did agree that Pearlsky was severely disabled and had no issues with her.
We had a talk after that incident, it went well, and then I said, “But who will apologize to Pearlsky?” His immediate response was “I will.” And you know what? He went right down to the classroom, grabbed a chair and sat facing Pearlsky, and apologized. I know this because both teachers and an aide immediately contacted me in disbelief. He is the only person, other than me (ouch) who has ever apologized from wronging Pearlsky.
YOU cannot take responsibility for this, and we both know that. Yes, in a professional sort of way, and I appreciate your words, but no, this was not your doing. You can take full “responsibility” for fixing it. AND THANK YOU for that. This was one of many very well documented and known actions taken (illegal and/or just wrong) by K to Pearlsky’s detriment. This was fully and solely K’s doing and she is responsible.
What can you do?
First, you can believe that Pearlsky has a consciousness, an understanding of the world around her, and potentially a lot more. Almost universally her doctors, nannies, teachers, and others who know her well believe that she easily understands on the level of a 6 or 7 year old, and potentially a lot more. She cannot get anything “out,” there is zero communication (although lately I am having some success that I will not share with the classroom at this time). Once you believe that there is a conscious, knowing soul in there, everything changes. Proof things change if you believe that? If Pearlsky was a typical 7 year old (for “mental” equivalence), wouldn’t someone apologize to her? Of course they would. Pearlsky is 19 and deserves such.
Second, you can bring this to your boss, the assistant superintendent’s attention (I cc’d her here, and only her, but many people ignore emails if they are not primarily addressed). SHE can have K take responsibility and apologize to Pearlsky, she is K’s supervisor. It boggles my mind that there is typically no accountability, no real responsibility accepted for what is done to “these” children, done to MY daughter. Pearlsky deserves an apology from K, if not also from the school. But alas, she won’t get it, because, well, Pearlsky is not a normal kid. We don’t apologize to the mentally disabled. Want proof of that? You apologized to me today, but did you apologize to Pearlsky? Rhetorically, if not, why not?
The teacher deserves great credit for today. He is one of the only assets left in that building.
Time for me to shut up. I will not continue with this incident …
THANK YOU for caring.
There is one great line in there, one that would hopefully make her think. I had no idea how she would react to it. The last part “…but did you apologize to Pearlsky? Rhetorically, if not, why not?” I wrote “rhetorically” because I did not want to put her in a position to admit she did not apologize to Pearlsky because 1) this was not her fault and not her place to do the apology and 2) I sort of need her on my side, backing her into a corner to admit something like that would serve no purpose. But, I did want it out there.
I just got this, in toto:
I didn’t apologize to Pearlsky because by the time I met with staff and determined all had gone well and held a general staff meeting, Pearlsky was gone.
It’s over, she is getting normal food. I will see what the state says about my complaint with the head nurse, and either way will probably start on federal civil rights charges against her. Anyone know a good lawyer?
“What’s done can’t be undone.” – completely disagree!
“If there is a road down there, there is always a road back.”
I love how you advocate for your daughter. It warms my heart — nearly hot enough to overcome the flames of anger that you have to do so.
Apologis for being a shitty friend and not being as available on all this as I should be. Trust me, I have been a fairly lousy one to everybody.
But my opinion? The reason it sticks in your craw despite the person’s e-mail, which was fairly straightforward ‘I take all the blame and I apologize’ and right in your particular wheelhouse?
Because you know as well as I do that the Alien Queen is the bigger issue and she is still there and she has Personal Agenda and as long as she is there you will never feel that Pearlsky is truly ‘safe’.
Period end of sentence. At least, that’s my take on it.
What must particularly enrage you more is that you KNOW that you are not the only one with a brain in the Knowledge Loop, and that people who work In The System know this too, and yet, she is still there.
I could be wrong, it is simply how it appears to me. Could be just putting non-matching socks on Pearlsky…it would flip you over because as nice as you actually ARE you know the AQ would probably be doing it with some agenda in mind.
How long has your complaint of the nurse been in review? Over a year?
Had she been fired in a timely manner, this malicious method of feeding could have ended sooner.
Maybe it’s time to write a tell-all book and let people know what really goes on with disabled kids in the public school system.
Been lurking for a long time, only commented once but….
“Once you believe that there is a conscious, knowing soul in there, everything changes. Proof things change if you believe that? If Pearlsky was a typical 7 year old (for “mental” equivalence), wouldn’t someone apologize to her? Of course they would. Pearlsky is 19 and deserves such.”
GO SINGLE DAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Oy. And again, oy.
Re. the lawyer, have you tried contacting the ADA? I can see this as a benchmark type of case.
That’s incredible advocating! I think I would be the same way if I knew my daughter could eat normally. She only goes to school two days a week for two hours at a time. I did just get them to get a stander! Thanks for sharing this.
“Pearlsky has a consciousness, an understanding of the world around her, and potentially a lot more”. Love that sentence.
SD, you have exhausted enormous effort to restore a situation that should have never changed in the first place! That would be enough to unhinge anyone; I can imagine how Pearlsky feels about it. My son is non-verbal, though his expressive language is pretty good. Yes-sadly-there are people in educational positions that have taken advantage of this. If someone cannot “tell” on them, they feel like they hold the log book and can write the story. It is extraordinarily frustrating for a parent and for the person themselves. But, you have “fought the good fight.” Go, SD!
As I told my husband yesterday, any harm done to our children, especially if is done by someone in authority who should know better, hurts parents in a visceral way. I am fairly forgiving of professionals who have hurt me, either physically, emotionally, financially or whatever. It takes awhile but I usually come around to forgiving because I don’t like to carry around a loathe of seething fury.
However, when it comes to the kids, unless they tell me they’re fine and
Damn “publish” button. It has an eerie way of pressing itself.
Anyway, unless my offspring tell me they’ve moved on and they’re not upset anymore, I go on hating the offending party with fury that would melt steel.
It’s worse for you because Pearlsky can’t tell you she’s over it. She must have loathed the nasty blended concoctions but she couldn’t tell anyone. Any resistance on her part would have looked like random muscle movement on the part of her clueless captors, um, teachers.
That nurse is evil. She is a liability to her profession. She needs to be fired so she can get a job for which she is better suited: gassing puppies to death would be a good career move, from the way you describe her.
The nurse is a bully! I’m a forgiving person, too, but this isn’t the case of an error or an oversight. This is bullying, and it’s mean.
Quite an impressive job, dad, coupled with a remarkable sense of restraint. My e-mails would have been littered with profanities. By the way I was a high school principal for 30 years before retiring. If I was confronted with this mess people would be hanging from the rafters in the front foyer. You don’t fuck with parents of disabled kids or the kids themselves …
Just found your blog , my daughter Aimee,s doctors wanted to tube feed her because she was slightly under weight , Aimee was diagnosed with neuroblastoma (tumour) and opsoclonus-myoclonus syndrome (auto-immune disorder thats attacks the brain) leaving her with severe learning difficultys and poor motor skills , Aimee really enjoys her food so we were adamant we were not going to allow this to happen as her food is her only pleasure , Aimee watch,s every mouthfull of food we eat and not to give her food off our plate would be a crying shame , when Aimee started restbite the centre started liquidizing her food but we soon put a stop to this had to explain as long as its cut up small its fine .