“The people to fear are not those who disagree with you, but those who disagree with you and are too cowardly to let you know.” ~Napoleon Bonaparte
Let’s say you are a cat lover. Unfortunately your cat has some problem and needs medication every day at noon (I actually spent a year giving a cat insulin shots daily), so you hire a neighbor to do it since you work. One day your cat is really sick, almost dead, you take it to the vet and then find out that the cat has not had it’s medication for over a week. You call the neighbor who says “oh, I thought the cat was better, sorry.” You have no choice but to keep using the same neighbor.
Or how about the fact that your mother has Alzheimer’s and is bedridden. Unless she is physically turned and moved a couple of times daily she will get bed sores and worse. You visit every night, there really isn’t much talking, but you are there. One day you notice some blood on the bed, and find out she has awful, bleeding sores. You go crazy with the staff and they assure you they will turn her everyday, but that staff is gone by the time you visit.
Would you ask the neighbor to mark off on a chart or something when s/he gives the cat medicine so you know? Would you want to know every night that your mother had her position changed? Do you deserve to know?
Yes, I am referring to the previous post.
Two summers ago, Pearlsky’s physical therapist told the summer staff that Pearlsky did not need PT during the summer (violating doctor’s orders, violating Pearlsky’s IEP … see the end of this post and many others). How did I find this out? It became impossible to get Pearlsky to bend properly to get her in her wheelchair in the morning. I finally called the school to see if they had a clue as to what was going on and that is how I found that the PT cancelled Pearlsky’s mandated physical therapy.
Hmmm … is Pearlsky more important than a cat? Maybe I need to know on a daily basis?
The comments on the last post are interesting. Two woman, both of whom I know and respect, disagree with me that Pearlsky’s physical therapist should have to simply initial a piece of paper after the forty-five minute physical therapy session. Now, understand, I love a good fight, a good argument, a disagreement but this is a tougher situation.
When I was teaching at the University, fairly early on, DR came into my office (this left such an impression on me, I remember his name after 30 years) and we discussed something he was designing / researching. Three months later he came to talk to me and all his work was a failure. I asked why he went down the path he did, and he said that it was because of my suggestion. I asked if he thought I was right at that time, he said “no,” but I was the professor.
Since that day I taught every single student I ever had to argue (appropriately) with me on any engineering point until one of us “wins.” Design and engineering often includes life sustaining / threatening things, you have to get things right. Being a prof does not mean always being right.
I am not going to argue the PT / silly note point; some of you did very well in the comments. (Hey, Elizabeth, if that husband of yours runs away with the mistress, give me a call, will ya?) Why won’t I?
I do not want this to come across wrong … but I won’t argue the point because unless you are part of “our club,” as I have said many times before, there is NO WAY you can have any clue as to what life is like. None. Nadda. Unless you have a severely disabled, non-verbal child you have not only not “walked in my shoes,” you have not even been in the shopping mall where the store is that sells those crappy shoes. See that tab on top of my blog that says “Shoes”? Go read what it says, it is short. Go ahead, I dare you.
Some of you are in my specific club. Pearlsky has NO communication, yet it is me who is in the dark. I rely on others to tell me who her day was, why she has mysterious welts on her arms, etc. Many of you are not in this sub-club, your kids can tell you something. But in a larger sense, many of us, are in the club. I know I have readers who are care givers, teachers, social workers (yep, one or two even like me), therapists, at least one lawyer, a couple of goddesses, but most of you are parents. You get it. Aphrodite got it, she had a kid in Pearlsky’s sub-club. Freya gets it to a great extent, but even she will admit not getting it 100% although she has a child with a disability and is surrounded by this population daily and has worked with them extensively and loves Pearlsky.
One of the commenters that disagreed with my wanting the notation of physical therapy is a very intelligent, wonderful woman, but alas, she is single and does not have children. The other is a physical therapist, actually a PT for a school district, and is a mom of “typical” children. Again, I know both, have met both (one I have known for years), I respect both, but they have a different point of view. I am not going to argue my point. No need to, mine is out there, so is theirs. And I always welcome comments. Any comments. Please keep them coming.
Any of you that have a “holiday tree,” … happy holidays.
If you have a Christmas tree, then Merry Christmas.
If you have something else, then have a great something else or at least a great weekend.
Me and Pearlsky? We are off to light our “holiday candle holder.” Then some Chinese food.
Don’t you know Pearlsky gets a vacation from her disability each summer? That must be why they canceled her physical therapy; duh!
/sarcasm
Sorry to tell you, people are only human and they make mistakes. Let. It. Go. It’s Christmas dude!
When you behave like this it makes it hard for staff at the school to take good care of your daughter. You get more with honey than with vinager, and let me tell you, I’ve been reading your blog for awhile( read the entire thing actually) it kills me when I see you pick on folks that can’t fight back. Lighten up a little.
I’m the single/childless person that SD is talking about. I think my main point got lost in my comment on the previous post. I *DO* agree that the PT should have to sign the note, but I also think that you were too heavy-handed in getting her to do it.
When you make snarky comments, even reasonable and professional people might lose it and write something snarky back. Note that in response to HER snarky comment, you lost it and went over her head and wrote a too-long, too heavy-handed email to her superiors. She’s really not any different from you. In response to snark and an aggressive attack, she got aggressive back.
Unfortunately in many cases, things don’t change unless/until you blow your stack and send emails cc’ed to everyone at school. But that really shouldn’t be your first M.O. unless you want everyone to write you emails in return that will just make you more upset.
I love you, SD, but if I got an email from you in which you insinuated that I have brain damage, I’d be pissed — and I’d have every right to be. You want her to act professional but you accused her of being an idiot.
You are right she should sign the notes. You are WRONG in the way you dealt with her.
The first note went to the teacher and the school’s Director of Special Ed (who has mandated the notes be signed), not the therapist. I am not sure she saw it, but that is a moot point.
Her response did not attack me nor was snarky towards me (either of which would have been somewhat justified), her response was to express her belief that the notes are “silly,” and thus meaningless. She choose to “attack” the concept of informing me of the services, not me, thus making the situation both clearer and worse.
As I said in the original post, the last half of the last sentence of my original email was not appropriate, I admit to that. Actually, I knew it right after I hit “send.” That said, the importance of the notes, and the importance of her not initializing them is main point, the one which she ridiculed.
If she simply let me know she did not appreciate my snark it all would have ended with me offering an apology. She responded by defending her actions and by ridiculing what she has been told to do, what is part of her job, hence I went over her head and showed her supervisors that I was not getting notification because the PT thought it was silly. I had no choice but to go over her, and I did, but simply one level above her. I notified her direct supervisor (Asst. Superintendent), the SPED director who is not her supervisor (technically) but has insisted on the notes and assured me they would be initialed. One level up is not typically considered inappropriate.
It surprises me that people who have read your blog for some time would not come to the conclusion that you have dealt with such ongoing and insidious incompetence at the school, that immediate and pointed action is required when idiocy raises its head yet again. The tone of the note was dismissive: coming from a “professional”, especially unnerving. Given her history, she got what she deserved.
Ah,”The Club”, such a complicated/beautiful group we belong to, uh?
Happy Hanukkah to you and Pearlsky,SD. You know, little known fact about me: I went to a darling Jewish preschool for 3 years as a wee little one. Some of my earliest memories. Wonderful ones. Went on to become best friends with a girl there and accompanied them to services every Saturday evening for years and years. Into middle school actually. Loved the spread of goodies afterwards! Anyway, her dad was a professor at the university in Binghamton where I lived, and it drove him crazy,crazy that the little Catholic girl could remember and recite the prayers better than his own daughter.
Not sure why I just shared that but the vision of you lighting your menorah, evoked those memories. Thanks for that.
I also have read your entire blog, and this post is one of the first times that I have felt disappointed/hurt (I’m sure that is not quite how I feel, but I seem to lack the exact word that would match my feelings at this moment).
The first is that you feel that because a person does not have to same problems/situation, that renders them 100% completely unable to understand anything that you go through. I read your blog (even the Shoes thing) just so I can gain an understanding, of any amount, of what a parent of a disabled child has to go through on a daily basis. I have no children, I have no disabled immediate family members (one cousin has Down Syndrome). Yet I can understand pieces of what you go through (having to accurately medicate your daughter several times a day, the stress of having to plan every detail just to take her to a doctor’s appointment). I agree that I WILL NEVER get 100% of everything you go though, but I do get some of it. In regards to the Shoe story, just because I cannot walk in your shoes, doesn’t mean I don’t see your footsteps. I am sorry that even that little piece of empathy is worthless to you. (And even with that empathy, I would never tell you what to do, nor judge your actions in regards to your daughter, which is how I interpret the Shoe story – I can only explain how my reaction might have been – I may have been.. nicer to the PT, but then again my personality is to be respectful no matter what is being thrown at me)
On the second note, you stated in your comment, “If she simply let me know she did not appreciate my snark it all would have ended with me offering an apology.” I have a feeling that she could have been fired for daring to be snarky back (then again, probably not consider the crazed evil school nurse still works there after all that she has done). I have had clients yell at me, call me names, throw stuff at me and yet, if I dared to be snide back, or dared to speak up about their behavior, I would have been fired instantly. My only recourse would be to defend my actions. I do agree that the PT sign off on that she did the therapy, and should be happy that is all that she has to do. Nurses have to chart everything – from medications given to what they told the patient and how that patient responded.
I do apologize for the length, Merry Christmas, Happy Hanukkah, and Happy Holidays to those that I missed.
In my state, if you don’t sign off that you did it, when you did it, then legally you did not do it.
In my county she would be fired for negligence (but then the bitch school nurse would have been fired ages ago – as well as sued and publicly humiliated on the evening news).
“I know I have readers who are care givers, teachers, social workers (yep, one or two even like me)…”
I claim brain damage. What else could explain why a reasonably intelligent person would CHOOSE to be a social worker? 😉
She should have signed the paper. Plain and simple. She should also be able to recognize when a parent is angry and respond in a professional manner. Parents say things to me all the time that I would rather not hear. It’s my job to be a professional, apologize if needed, and direct them to my supervisor if warranted.
I was a high school principal (7-12) for 30 years; also the dad of a severely disabled kid who I had placed in my school. (He’s now 26 and lives at home with us.) You would think I would have an advantage? Think again…
School special education staff, especially Speech Pathologists, Occupational Therapists and Physical Therapists feel they know better than parents respecting what their children need and want. These occupations’ education programs have not changed in 50 years…they use the same old techniques. Take a kid with spastic arms, tug and pull, and watch them get progressively and more spastic. Good PT technique.
I had to fight for what I knew my son needed, I had to always appeal poorly and unintelligible IEP’s to the state. I always won, eventually.
Do not be deluded, schools (many, not all) are not welcoming places for the severely disabled. They are repositories of money saving strategies. Snarky? Mean? Callous? You have to be so to get what you need for your kid. Honey attracts flies the same way that shit does. It does not get you far because it opens people’s perception to believe you are a doormat. I always pepper my comments with “fucking” to some staff as it will usually make them not want to deal with me again. To get what is needed, at times, you need to go for the jugular, especially when it’s your seventeenth time.
If you don’t have one of these prize packages whom you love dearly, you do not know and despite all your compassion and empathy will never understand…you just need to admit that you can never get it and do what mom and dad ask.
You’re right, Marie we are human and make mistakes…”vinagar” is really “vinegar”. Sorry, just an initiated member of the snarky club.
My son is moderately disabled. He has a tiny bit of language – i.e. can ask for a cookie, but cannot say he is hungry. He has no commenting abilities and the past is not something he seems to be able to conceptualize, let alone verbalize. He cannot tell us what happened in school. If the people do not document what happened, we do not know what happened. It is a constant battle. Constant, never-ending battle. They do not want to document anything.
I am not a snarky person. I ask and write polite emails and come by and ask again. One-two days of documenting, then nada. My kid is in kindergarten. Perhaps by the time my kid is 18, I will be as snarky as SingleDad. Maybe that will work better.
However, I also decided from the get-go that school services are going to be useless, and we are paying through the nose for private OT and speech. I did my research and found the very best specialists for him. Those therapies help. And guess what, the private providers document *everything*.
Those who say that SingleDad is too snarky, or get hurt by his entries – you need to rethink. This is not about you. SingleDad has no obligation to make you feel warm and fuzzy, or to be warm and fuzzy. If you have never cared for your disabled child day in and day out, you have no idea how tired it makes you. My brother has a moderately disabled nephew, but guess who wasn’t here for the seventeen times in the last month that my kid smeared poop. My brother *knows*, but he doesn’t *know*. He sleeps at night. He leads a normal life.
If you have never cared for a disabled child, you may not know how often the system fails our children. I have not walked in SingleDad’s shoes, but even walking in my shoes, let me tell you that the system fails our children, and if fails them so often because many people – yes, people – cut corners they would not cut with a neurotypical child. They do this because the child has no language, or much less language, so they assume the child does not understand or care; or the child responds very slowly to therapies, if at all, so why try at all? They cut corners. Sure, some people are not like that. Both my OT and ST have worked in the school system and quit because they couldn’t take it anymore.
SingleDad, I’m a long-time lurker on your blog. You helped me a lot. So let me say this: you’ve been growing progressively more bitter. Your bitterness is completely justified, nevertheless you sound more tired and more heartbroken lately. Please take care of yourself. Get a massage – and not the erotic kind 😉 do something physical for yourself which is not about relationships.
I guess the practical issue here is: ideally, should Single Dad apologize for the part of the conversation which he himself admits was uncalled for and unhelpful, wherein he suggested the PT had had a stroke? The part that most of us here seem to understand put her on the defensive and led to HER using unprofessional arguments and language?
If yes, then what we ALL agree on is that people are jerks sometimes – everyone, even great people — and parents of disabled kids are doing their best with a really tough, impossible situation, and its very understandable that you get very frustrated and angry because you have SO MUCH shit to deal with (literally and figuratively) and everyone has to expect someone in such a frustrating situation to lose it sometimes. Losing it is part of being human, and being angry and often snarky is part of being a parent of a disabled child, and unfortunately sometimes — often, maybe always — that’s the only way things get done.
If not — if you think in an ideal world the PT should just suck up the part where he suggests she is brain damaged, and that’s fine because he has so much on his plate — then what some of you are saying is that all the crap you have to deal with as parents of a disabled child gives you the right to be a jerk. You are saying that even if the parent has gone too far and abused someone who takes care of his child, all the shit on his plate negates any responsibility for his own words and actions. He gets a free pass to be an asshole if he wants to.
I just cannot accept that. I can accept people losing their temper, taking out their anger on others, using words they later regret, being bitter, lashing out. I cannot accept that any adult shouldn’t take responsibility for the choices they make when they are angry and the effect those choices have on other people. Single Dad is a much bigger person than that.
Yes, the PT should be signing those papers and should NOT call them silly. But if you don’t also think that SD should apologize for that first email, then there is a lot of hypocrisy going on around here.
Don’t know about y’all, but I think that erotic massage idea would go over pretty well around these here parts at this point.
Being nasty, snarky, outrageous, irreligious, irreverent are privileges given by god, or whoever, to parents who are charged with caring for and lovingly embracing a severely disabled and medically compromised child. It’s a refined skill, used when necessary, and needs no apology; god says so! In fact, she gave us a membership card which grants these rights and privileges and additionally she says we don’t ever need to get over it.
I most definitely agree with Anon Ye Moose – sorry Rose although your point is spot on. I’m a caretaker also and people always say “make sure you are taking care of yourself too” – which I of course ignore. How exactly? When? Who’s volunteering to cover for me? Just glanced over the Polls section and 3 minutes of hot sex should be an option on every question.
Wow, very very decided opinions here. Rather divisive (sorry can’t think of better word and I know there is one).
Both sides have valid points. SD also has a major responsibility to his daughter to see she gets the care she needs. Notice I didn’t evne say ‘best care’, I left at ‘care she needs’. You don’t skip the care someone needs.
One thing I noticed about that PT: did she sound very young and immature to anyone else? I don’t know how old she is, and I’d be interested to know. It sounds like the response you’d get from someone fairly young and relatively new to her field. Someone who takes things very personally instead of sitting back and thinking about the situation the other person (the parent of the disabled child) is in.
If it was me? (I wouldn’t have called it a silly note to start with). I’d apologize for missing the sign outs and call out SD politely but firmly. Yes, you can do both. Sounds like the therapist doesn’t have a clue how to deal with angry family.
And for the big issue: if it wasn’t signed off, legally it wasn’t done. I honestly think this PT is heading for big legal trouble (as well as ethical trouble here). I have a feeling the schools whole attitude towards the disabled is a very poor one, and I believe that is the bigger issue SD is fighting here.
I do not have a disabled child/grandchild or person I love. I read SD’s blog and others because they truly touch my heart and remind me how blessed I am….but more importantly what wonderful, dedicated people are out there fighting the battle every single day. I love SD’s snarkiness…I can be snarky in much less situations. Yes, honey and vinegar and all of that – but sometimes we simply need to get things off our chests and call the so called professionals on the carpet. Pearksky’s well being is most important – who really cares about the emails and the PT….just do your damn job ad sign the sheets…it’s not that tough is it?
Shoot – this is the first time I left a comment and I neglected to sign my name and email…I apologize. I am kinda of assuming SD hates anonymous??
I am the mother of a developmentally delayed child – she is 4 and is just becoming verbal, but she really can’t tell me much about her day. I work fulltime (out of necessity) and I rely on others to fill in the details about her day…things I must know, information I can use to make her already stressful life a little less stressful. I need to know she had her seizure meds, I need to know if she pooped or there is major discomfort for her ahead. By knowing this information EVERY DAY, I can make her life better. Recently we changed to a new daycare and they forgot to give her seizure meds to her….they discovered this, they called me at work, they took full ownership, and they assured me it would never happen again. They just earned my full trust, because they were forthright. They now write everyday the exact time she has her meds. So my point in all of this is Single Dad NEEDS to know this info to make Pearlsky’s life that much better and if those who made a mistake would not shrug it off, maybe they could earn his respect and it could be a great example of “Team Pearlsky” — everyone working together…parent/teacher/PT/OT/nurse, etc. etc. etc.
“I know I have readers who are care givers, teachers, social workers (yep, one or two even like me), therapists, at least one lawyer, a couple of goddesses, but most of you are parents.”
Yep, I fall into this group, meaning the social work group. What I like about your blog is how real it is. When I say real, I mean that you don’t sugar coat anything. You tell us how it is and even though I am not part of the club you refer to, I am starting to understand what will be demanded of me when I do get my social work license, and for that, I thank you 🙂
Wow what happened to this being your blog and being about you able to write what ever the hell you want? Do people know they are not actually required to read it?
To me this is what it comes down to, your a parent and like most great parents you fight for your kids right and life with everything you have!
Hope you and Pearlsky are both well as can be expected xx
I can’t get over the fact that she is upset about SIGNING A PAPER.. My child has OT, PT and SLP and every single one of them writes out a long note detailing what they did with my child, how he responded, what skills they worked on, and ways to continue working on those things at home or preschool. The paper is then signed, dated, and they write down the date of the next appointment and this is all made out in triplicate. A copy for them, a copy for me, and one for his preschool if he happens to be there that day. And they do this whether he is at preschool or if I was sitting there for the entire appointment watching. Now, I’m in Canada, so I guess it’s different in the states. Maybe it’s different in other provinces I don’t know, but these services are not paid for out of my own pocket or insurance.
So I’m just wondering why she’s so upset about signing a paper. None of my child’s therapists seem to mind writing out their notes and making sure everyone involved gets a copy. In fact they need those notes to do their yearly report on my kid and make recommendations for further therapy. I think too that they have to submit them to our Children’s Specialized Services office as well who manage all the services and therapies that we have. I know they send them the yearly report at least because we get a copy of that as well.