“Govern well thy appetite, lest sin surprise thee, and her black attendant, Death.” ~John Milton

So much to talk about … traveling four hours each way in one day to a meal that you really don’t want to eat because you cannot stop and go to the bathroom on the drive home … the state attorney general lighting a fire under the Office of Public Protection to get an answer on my 27 page nursing complaint which should get me an answer this week … but alas, I’ll take the easy way out and share the emails du jour …

Sent to Pearlsky’s teacher, the school superintendent, the state attorney general, etc. Note, I happen to know, through unofficial channels, that this is all nursing’s doing.

As you know, it came to my attention just before vacation that you are only feeding Pearlsky fully blended food, and that you are blending things such as a chicken, cheese and bacon sandwich and basically having her drink it. This astonished me, I was never made aware of this before.

Until Pearlsky entered the high school, I often supplied her lunch which included sandwiches (with “thin” Pepperidge Farm bread), tuna fish, various spreads, etc. Once she entered the high school I was told that lunch would be purchased or prepared in the classroom.

At home Pearlsky always eats “normal” food. She eats anything that can be broken up with a fork. Items such as tuna fish or egg salad, pasta (pastina or orzo as is) are all available for her. She loves scrambled eggs and as a snack, donuts. We do not blend food, ever. I don’t even own a blender.

Additionally, as documented to nursing this past summer, Pearlsky has issues with aspiration. She aspirates fluids, not solids. If you have medical worries, they should surround the liquids you obviously now insist on giving her, not the solids that she normally eats.

There are three, and only three (as far as we know) things that give Pearlsky any pleasure. One is putting her fingers in her mouth and it took me two years to get your staff to allow her to do this. The second is swimming and that is no longer allowed, after 10 years. The third is eating, a pleasure for many of us. She enjoys to eat, enjoys various tastes and smells associated with it. That is it for her pleasures in life as far as we know.

I insist that you feed Pearlsky as she is fed at home, as she was fed in school in the past, food that you yourself would eat. There has NEVER been any medical directive for anything else. Why this is being done is beyond me and beyond her doctors, and is totally inappropriate.

Note that Pearlsky’s doctor did document this past summer that Pearlsky should have one-on-one nursing, as she did over the summer, specifically because of her drinking issues and her aspiration. Your nursing staff decided to ignore the doctor’s specific documentation of Pearlsky’s needs, yet again. I did not follow-up on this since it seemed destined to fail.

Why is Pearlsky being treated differently? Differently than at home, differently than other students? What is the basis for this since she has NO eating disability?

I get a call from the new Assistant Superintendent for Student Services. She tells me that she was under the impression that Pearlsky always ate gruel. I told her that is insane.

The teacher, Mr. Pants-on-Fire responds with:

I know you spoke with the superintendent today, I hope it went well. Please know that all I really want to do is what is best for Pearlsky and I will be happy to follow whatever protocol everybody deems appropriate. Being so new to things here I am still learning and, up to now, following what I thought was the correct procedure. I certainly do not want to deprive Pearlsky of any pleasure and agree with you completely that we should do what we can to help her get the most out of the small pleasures she does have. That said, I hope you can understand my reservations about doing something that I have been lead to believe could be dangerous for her. I am all for her enjoying herself but would rather not be on the delivering end of a Heimlich Maneuver. I know that there is a long history that I am not privy too but please be assured that as soon as everybody involved comes up with a plan I will be happy to implement it.

To which I respond, after hearing what they fed Pearlsky today …

I would guess the reason that her feeding was changed when she entered the high school was due to someone wanting to make their job easier.

It is insane that today Pearlsky had blended pizza. How horrendous is that?

It is trivial to feed her properly, I can show everyone, but to start is simple. Just give her Cheese Doodles. She loves them, they break up easily so you should not be nervous, and they make a mess, fun for everyone. The other easy one is orzo or pastina pasta. You can’t really choke on these things, and note, SHE HAS NEVER CHOKED on solid food. She aspirates liquids all the time, that may cause a problem, and probably will. But as for solid food, she may cough a bit or something, but she has never choked nor had an issue. In nineteen years. Nada. Not once.

Referring to your comment, I’ve done the Heimlich twice (I was a paramedic in my younger days), once on a big guy and once on a petite woman. Trust me, on Pearlsky it would be trivial! And she’d laugh afterwards. But again, she has NEVER come close to needing any intervention whatsoever with feeding.

You allude to problems in the past, never with feeding and rarely with the teachers. There are currently major problems with nursing but I don’t see how those are involved here. Every one of Pearlsky’s doctor’s knows what and how she eats, it is discussed at every appointment with at least three of them, several times a year. No doctor has ever told nursing anything about Pearlsky’s eating, why should they? Her eating is completely normal.

Thanks for your feedback, and no more blended pizza, ok?

Maybe someone will give them a clue for Xmas …

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