“Please accept my resignation. I don’t care to belong to any club that will have me as a member.” ~Groucho Marx
Wow. I did not mean to start such controversy! But then, I love it. Several topics in this post.
The odds that the physical therapist of the last two posts has even seen my original email (with my snarky clause, as opposed to a Santa clause, of course) are very slim. It was actually written to two people who are not real fond of her. My reaching out to apologize to her is probably not wise, I have apologized to one recipient, so far, for my snark.
Rose commented:
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 think that over the past year I have grown somewhat more bitter, but that is turning around. It’s been 19 years in this club, more than half of them alone. It takes its toll. Last spring was tough, but life is looking up. As for the massage, that is a good idea, but come on, no happy ending? I don’t know if that constitutes a relationship …
As for Marie’s comment:
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.
Well, Claire did a great job on the first part of it, and Phil put it in an interesting light when he said “Honey attracts flies the same way that shit does.” Besides, Marie, when have I ever picked on someone who can’t fight back? Decidedly not my style.
I have received some push back on the idea that if you are not in “the club” you can’t understand, you don’t get it. Well, to that I say, even many of you in the club don’t get my sub-club! Let me explain my point of view.
First, here is a link to a short blog post that Barbara sent me, I found it a good introduction to the topic and just want to share.
None of this is here to elicit sympathy, pity, nor any emotional response. It is not easy to write, but it is the way it is. The point of this is to explain why you don’t get it, why you can’t.
I have no clue what it is like to have my child run up to me and be excited to see me. I have no clue what the feeling is when your child says “I love you.” I have seen it, I have been next to people when it has happened, but yet, I have no idea. I know better than you the feeling of NOT feeling it. That I get. All to often.
I have no clue what it is like to have your child cuddle you. No clue what it is like to have the school or police call because my kid has been caught with drugs, having sex, punching out someone, winning a spelling bee, getting an A. I don’t pretend to understand, even though I was that kid …
For nineteen years, my children have never looked me in the eye. Never said a word, never acknowledged anything. Several of my favorite bloggers in this “club” have children who give some response at times, and have other normal kids (yeah, yeah, “typical”). I don’t care what you say, what you think, you cannot fathom nineteen years of not being acknowledged, spoken to, thanked, cursed, teased, played with, run to, … nothing. A gerbil gives you more.
Can you fathom your child coming home with welts on both arms and no one explaining? No clue what really happened? For days?
Some people outside the club should get it, no? How about the special education teachers? The experienced ones? Yes, the ones that write in progress reports, “Pearlsky made the correct choice between two offerings 70% of the time.” Sounds reasonable, right? The choices were Pediasure and apple juice. WTF? Yeah, you get it. Which one is the wrong choice, moron? How about the school nurses? Learning that for four years your child was fed gruel as opposed to “typical” food like she gets at home? Refusing for four years, against orders from three doctors and the department of health, to give my daughter her life sustaining amino acid? Yep, nurses should get it. They don’t. Social workers? “How do you feel about having a severely disabled daughter?” Good question, yeah, sure, you get it. How about a nurse, on her own, trying to hire morning help for you since you should not bathe nor dress your own teenage daughter? Do you know the (humiliation? anger? resentment?) that goes with that?
When was the last time you spent hours holding your teenage daughter as she was riddled with seizures? During the middle of the night? No one to help, nothing there but you, your beloved everything, the only thing in the world you adore more than life itself, seizing, her brain being wracked by the forces of hell, and you are helpless. Where’s your god then? Do you have a clue how that feels? How that changes your view of the world?
The lord only puts on your plate what you can handle. Yeah? Fuck you.
Every experience we have makes us who we are today. Friends have told me stories of their past that they feared would make me change my opinion of them, but the truth is, whatever the story, it made them who they are today, and that is what counts. Same with me. These experiences have made me who I am, for good or bad. Some of you have had some of them, and get it. But how much? I don’t know.
The people that fully agree with me that they don’t “get it” are actually the closest to me. The women who know what my heart beat sounds like admit they can’t conceive of it, even though they witness it, live some of it with me.
Pearlsky has a soul, there is no doubt. She has a personality and a mind. It is just not available. Sometimes there are interactions that bring tears to my eyes (in a good way). Other times, it is like there is nothing there … an empty shell. That brings tears as well.
I believe there are many caregivers that read my blog, many are entering the field, and are learning many things, trying to understand, trying to “get it.” That is commendable, I feel both honored and a responsibility to help. I lay it out as it is, and yes, you will learn (not to be pompous) from it, but there is a level you won’t get to. If learning about Pearlsky and me helps, helps give you the ability to empathize, the knowledge of what may or may not be appropriate to say, then I have done some good.
Truth is, I hope you never get it. I hope you never join the club. But don’t think you really truly “get it.”
Kelly comes close to getting it, Chris is much like Pearlsky in many ways. But then, she has three normal kids as well.
It has been tough. Nineteen years. Yes, I am tired. Yes, I am jaded. But my life is more than Pearlsky, even though she is my whole life. Make sense? To me, yes, but do you get it?
Am I depressed or suicidal? Hell no. But, if the plane on it’s way down I won’t be screaming. I just hope Pearlsky is with me.
Until then, I’m going for the massage with a happy ending. I wonder if Freya knows how to give a back rub …
I have been shocked (though I really shouldn’t be) by some of the responses I have read on here of late and the simple fact is that those who are not understanding what you are saying or the fact of why this is important to you and why you don’t just sit there and “take it” – just do not get it!
It used to upset me but now I find it quite amusing that people assume that due to ones life being different from the “norm” that we are these bitter twisted people who hate everyone and everything. I do still feel hurt though that people do not remember that I am still living life without my son and that I am doing my very best to shine through the darkness and horror of what happened to him and live my life the happiest and the best I can for myself and him..all they tend to focus on is my harder days or when I voice my sadness or anger – why not celebrate my joy too..grr!
“It has been tough. Nineteen years. Yes, I am tired. Yes, I am jaded. But my life is more than Pearlsky, even though she is my whole life. Make sense? To me, yes, but do you get it?”
You know I get it – and while my situation is so much different than yours – it hasn’t even been 4 years yet and I’m exhausted but I know that as you do – I’ll keep on keeping on because I have to, because I want to.
Another thing that amuses me is that those who get annoyed/frustrated or find it hard to read you..continue to do so. I’d use the lil X on the top right hand corner if you had that affect on me 😉
Happy Monday evening!(I think..)
=)
I have a friend with a chronic illness who sent me this:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
The fact is, nobody can really understand what you go through, and yet, that won’t stop them from spilling out all sorts of stupidity from their mouths.
“I don’t care what you say, what you think, you cannot fathom nineteen years of not being acknowledged, spoken to, thanked, cursed, teased, played with, run to, … nothing.”
No, I cannot fathom it. For that reason, I’ll forgive you for being bitter.
I’m four years in. My daughter is much like your Pearlsky. Again, she became this way after a tumor resection. Holidays are no fun. I don’t think I’ll ever get used to it, but we made it through. Because Hannah was “normal” for her first four years of life, I do know what it’s like to be told I love you and receive the hug that goes with it. There is nothing like that feeling, and I’m sorry you never had that. Reading your blog is inspirational to those of us who are providing daily care for the long haul …the same routines every single day. In May we grew our Family. I have a healthy seven month old who communicates needs more than my seven year old. My husband and I were just talking about how we will be doing the same care routine for a very, very long time. Congrats on nineteen years!!
Ok, ok, you win! Have a happy ending! Heck, have a few 🙂 🙂 🙂
As a mother to a moderately disabled child, I empathize with so much of what you’re going through. Some is very familiar. My kid too came back from school with mysterious welts and once with a bleeding bruise on his forehead. When questioned, the aides admitted, “Oh, he just likes to crawl around on the carpet so much!” /facedesk Seriously?! He was stimming and they let him rub his forehead on the carpet until it bled 🙁 He, of course, could not tell me how it happened.
Now, I am usually a polite person. I was not polite on that day. I don’t feel the need to apologize for it, either.
But what I was going to say is that with all our challenges, etc, I have no idea how it is to walk a mile in your shoes, and I do not feel offended or excluded when you say this – because it is true.
Hugs if you take them.
Rose: Heck, I’ll take hugs, do I look stupid??? 🙂 Thanks for the comments!
Well said Single Dad, as usual.
My son turned three today. I can hardly remember what life was like before he helped us gain admission to your sub-club (his secret code word to get in being “Miller Dieker Syndrome”) but my wife and I are also well aware that we are still only rookies in this. Hopefully, we’ll have a long road ahead of us.
We have been lucky enough to meet a precious few professionals who may even come somewhat close to almost “getting it” but I think that being able to clock out at the end of the day and go home to recharge and relax (among other things) makes truly understanding our situation impossible.
Trying to wrap my mind around your 19 years of this life after completing just three so far(to say nothing of the fact that I’m lucky enough to have the help and support of a wonderful wife who is an even more wonderful mother holding this family together) has me in complete awe. I count myself lucky that I found your blog when I did.
Love you, Single Dad!
SD, I’m not in your club but rather on the fringes of it. I don’t ‘get it’, and sad to say, glad of that. I respect you more than you could know, and your posts – every single one of them – help me grow and understand this sometimes really crappy world. Your posts are hard to read, but I need them. I believe the world needs them, especially the so-called professionals.
Thank you for your honesty, honesty which often makes me cringe or cry or just want to leave the human race behind.
If you want, you can adopt me, and I will run up to you with my arms out and jump up into your arms and yell ‘YAY! Hi SingleDADDY!’
I guess I am weird. Yeah I’m weird. I haven’t seen you as becoming any more bitter over the past year. To me you haven’t really ‘changed’ at all. You are still the same complicated yet very simple man I have come to respect and wish I could be more like.
When it comes to you and Pearlsky, I see you as Kirk, not Picard. And I do love both Captains, don’t get me wrong. But Kirk is the reason the words ‘boldly go’ were created.
But I’m far too Picardian in my advocacy for Bennett. Negotiation. Diplomacy. Talking. Then more talking. Some side conversations with a friggin’ robot. Then some more talking. MAYBE, if things go south, I’ll ram the Enterprise into the enemy ship.
But you? You are Kirk. You get jiggy with the Orion Slave Girl, then bitch slap the evil Nurse in the bad latex lizard suit. There’s no negotiation. That’s comes AFTER you have beaten the enemy into submission. But that’s you.
And as long as I’ve read you’re blog, you’ve been like that. But Kirk also had that other thing, that loneliness, that longing unfulfilled, because what he cared for most was something that could never give back what he put into it.
Like I said, I’m weird.
But the point everybody forgets is, you are at war, and have been ever since your kids were born. And everybody in Pearlsky’s world is, potentially, a Klingon Bastard. And until they have proven that they are not, they are. Period.
You have every right to flying leap kick them in the chest as many times as you need to.
I love that quote 😛 and I second (seconded? does that even work somewhere other than facebook?) Sarah B.’s comment.
I followed a link from my own blog back to here.
Wow.
I’m not going to touch the whole issue surrounding the undocumented PT session because frankly: it doesn’t interest me.
What interests me are the questions surrounding perspective taking. The whole “shoes” thing. I’m not sure if one is allowed to link from comments, but I wrote a different, longer piece about it on my blog http://onesickmother.typepad.com/my_weblog/2009/09/other-peoples-shoes.html
I think it is important for people to understand that there are levels involved to “getting it”. I see them thus:
0. Someone has no clue and doesn’t want one (i.e. most people)
1. Someone has empathy for my situation (and there are levels to this)
2. Someone “get” parts of it.
3. Someone “gets it”. Period.
I don’t think anyone has reached #3 for me; -not even my spouse, because to get to that point you would really have to BE me. You’d have to experience the seizures and the other shenanigans firsthand to truly “get it”. And I really wouldn’t wish that on anyone.
Many people I have met over the years fall into #2. they will have kids who share some characteristics with my kids and they “get” those parts. And they often empathize with the other parts.
And some people fall into category 1. They empathize. They try to place themselves in my position. They try to imagine what it might be like. And maybe they can project themselves there to a greater or lesser degree.
But it’s a projection. Not a bad thing at all, and useful as an illustration. However, a projection is NOT the real thing, in the same way the World Trade Center “Tributes in Light” did not replace the lost towers.
Please note: I don’t want to undervalue empathy. I’m an empathetic person (to a fault, sometimes) I love it, need it, wish it in my children. I am trying to point out to some of your readers that with all the empathy in the world, one can not always “get it”. It took me some time to get my head around this (see aforementioned blog post) but once I did, it ….helped to accept that.
OSM
This was something it took
I don’t get it. I hope I never, ever get it. To get it I would have to virtually live your life, and since I’m am not insane, I pray that no child of mine is ever in Pearlsky or David’s position.
There are things I get, but I get my version of them: my father’s epilepsy and brain damage, the abuses suffered by my old clients that no action of mine could bring justice for, the loss of a child (in your case the loss of the neurotypical child you expected).
I will never get what your life is like, no matter how I might empathize, but I get the feelings of injustice and bitterness and rage.
I’d hold ’em while you hit ’em, and then I whip us up some great cups of coffee.
Hope all your endings are happy.
I don’t think you are being unreasonable or mean spirited at all. If any of these school caretakers, teachers, therapists had been outstanding and done a fanatastic job all along and then you jumped on them for ONE mistake, the first time they made one, that would be a whole other issue. That is NOT what is happening here. We all make mistakes, and one mistake, especially with aknowledgement, apology and it being clearly one of those danged things should be treated as such but when someone feels resentful of an ongoing process such as filling out information sheets, it’s not a mistake. It ‘s a chronic attitude problem, and I am sorry you and Pearlsky have to have someone who feels that way caring for her. It would not make me comfortable at all, even if the care were for a child who could communicate.
I think Pearlsky needs every bit of protection you demand for her and more. When my middle son went back to school after a protracted absence, I spent a lot of time there to make sure things were going alright. I can tell you that if I were the parent of most of the mainstreamed, disabled kids that I saw at his school, and this was an award winning school for its mainstreaming, I would have pulled the kids out. The kids were ignored and neglected, getting very little if anything in their time
Though my style of dealing with the inadequacies of the public school system was radically different from SD’s (and my very severely handicapped daughter is different from Pearlsky—-in fact all our kids are individuals and my daughter keeps me keenly aware of that, which really dilutes the “club” concept for me) I have been trying every day for 31 years now to hold it together for her as a single parent, and it is so wearying; the PT needs to realize that the demands of such parenting for 19 years take a significant toll. And as others pointed out, there is quite a bit of history here—the neglected paperwork is in a context of far more alarming incidences of neglect. Whether snarkiness is effective is beside the point. It’s understandable. It really doesn’t require much empathy to figure that out. But I agree with the 0-3 scale posted above;
most people are in the zero category, and actually I say that without rancor, because I probably would have been, too, had I not been forced to discard those shoes on this rugged path. Legality aside, I think the PT should apologize for neglecting a detail that would have given SD reassurance of services rendered. OTOH I hand-picked all of my daughter’s PTs, paid out-of-pocket for their superb skills and talents, and learned a great deal from them. My own bottom-line concern in a situation like this would not be the paperwork, but how to assess the quality of what this particular therapist can truly provide.
I get tired of the “Club” concept too. I have belonged and do belong to some clubs to which I was forced to join. These are the very exclusive clubs to which no one wants an invitation. To tell others that they cannot possibly understand is really an insulting, though true statement. Until you have children, until you have made a connection with a living being, until one walks in the shoes, yes, you cannot understand. However, those of us who have needs outside the mainstream, have loved ones in that situation need to make others try to understand, not only the rationale but the rights that come with these special needs. Yes, it is nice to “get it” that when one gets attached to a cat or pet or child or loved one, that one will go through a lot of trouble to give such loved one a medication to enhance and/or even have a life. But Pearlsky and other kids who need the meds, procedures, documentation are not to get these things due to someone’s benevolence but because THEY, WE HAVE THE RIGHT TO THEM. Just as a child has a right to an education at the public school, those children who do not have the communication skills and have needs that are outside that given to the majority of kids, have the right to have their education and care documented. You don’t get the report card because the teachers and school are doing you a favor. It is part of the job and part of the right of the parent and child to get it. So it is with Pearlsky.
This a time of great change and hopefully some switch in the perspective of what “services” the disabled are getting. They are not services in the sense that they are given because they are a favor or a charity or a benevolence but a right. We need parents like SIngle Dad here to pound that concept in the schools’ heads.
I can go on with my personal experiences at a public school that won awards for their “handicapped services” and their Holier than THou and Mother Theresa attitude for any and everything they gave. They were just doing a little more than most schools for kid who did not fit in the normal box they had and still needed a kick in the behind to remind them that all they were doing was what they were supposed to be doing, and they were not even making the mark on that.
Cath,
A cute comment about the Mother Theresa attitude. Chris Hitchens wrote a book about MT: “The Missionary Position.” She was more in love with poverty than the poor. A buddy of Charles Keating who fleeced the elderly of millions and he gave some to her which she refused to give back to the elderly when Keating was convicted. Was also a big friend of Papa Doc Duvalier? She had millions in the bank and her homes for the dying were hovels without medical people and medicines for cures. She was a friend of neither the poor nor the dying. They were supposed to suffer and die with a smile without care so they could emulate JC…a crock of shit.
Schools are not welcoming places for the disabled in many cases (not all). This is based on 30 years experience as a HS principal. Inclusion is tolerated only because it’s the law. My kid was seen as a budget buster..as we cared for him st home and still do. Frankly teachers are afraid of sped kids…that’s the bottom line. They spend their time covering their asses.
Love you too, SD.
One Sick Mother said
“Please note: I don’t want to undervalue empathy. I’m an empathetic person (to a fault, sometimes) I love it, need it, wish it in my children. I am trying to point out to some of your readers that with all the empathy in the world, one can not always “get it”. It took me some time to get my head around this (see aforementioned blog post) but once I did, it ….helped to accept that.”
I think this post has clarified things for me. I have been reading your blog over the past week, getting late nights and paying for them the next day. Every time you said something about “you just don’t/can’t get it” I felt a little offended, as if you were accusing me of not having empathy.
I understand now. I don’t get it. I don’t even “get” what it’s like to be a parent of any child that is older than two or not male. (that’s my experience, right there.) I can only truly understand my own experience.
I empathise. I try. Some things are too big, too different, for me to even imagine. Single Dad, you help in providing analogies, and by sharing such personal thoughts and situations.
So, is it too late to enter the “ambrosia buttocks” competition?
Thank you.
WOW….
I’ve been reading and rooting for you for a while now. I know I don’t get it. It’s been five and a half years since my bubbly, cuddly little 2yr 8mnth old boy’s near drowning that gave us entry into the wider club, but you’re right I don’t get your circumstances.
Hell, I’ve been sharing the last 5 1/2 years with my wife.. but I don’t get it from her perspective, I didn’t see my son’s accident, I didn’t do the CPR on him, I didn’t do the ambulance trip, I go to work.. she does his needs 24/7 most of the time, she spends the majority of time alongside him in hospital (which is all too frequently) while I look after our other kids and play tag to do the hospital thing over the weekends… a parallel but different path along the same journey.
Thankfully we have not experienced too many problems with services etc (apart from the abject lack of services… but that’s another story), we have been fortunate to have people that provide the services care and bend over backwards to meet our sons needs and to communicate with us, but we have still had to push and poke and prod on numerous occassions to get to that point.
I’m tired.. a bit jaded and sometimes downright snarky after 5 years.. but if you weren’t I think I’d be more concerned. I think sometimes it is that tiredness, jadedness and snarkiness that gives us the energy to push through.
I think One Sick Mother got it right with that scale…. we can care, we can empathise, but at a fundamental level no-one ever really “gets” someone else because all the ingredients of the individual story might be very similar, but they just make a cake that is different every time…
So Single Dad…. plough on brother! Be whatever you need to be to keep moving… and enjoy the happy ending!.
I am on the sort of get it catagory.
I am a single mom. I have a special needs duaghter. The school thinks they (who have known her ONE semester) have more information about how she functions than I do. (And i am also a teacher!)
I hope i never really get it. I have followed your blog for several years now.
As for the PT- screw her “silly” note. In the one semester that I have had my daughter in public schools (after private therapeutic school was no longer finacinally feasible:( )found that “professionals” responsible for my daughter’s care would like to do as little as humanly possible. The are out of compliance of her IEP, and I am having to get direct and bold in my approach.
Every private therapist my child has ever seen made note of each session. Today if I wanted notes on her PT from 2 years ago- there is a system in place from her private provider to get notes from each session she had for a year. I was IN each session.
My dd also can’t TELL me if she got services or not. She has come home with odd bruises. She sometimes can express that SOMETHING happened within a few days- shes almost 10.
Keep it up SD. and thanks for putting it out there. Sometimes I feel like such a bitch for demanding my dd’s rights be honored. It can be exhausting to be “that parent”. I am aiming to be more like you!
This post was powerful. I don’t “get it” and I’m not in the club, but oh, you have my empathy. For whatever it’s worth.
I don’t “get it” thankfully. I have a child with disabilities but not this severe. My heart aches for those of you that have no choice but to get it. It is not fair. Your post made me cry. My love goes out to you. I hope the religious stuff I hear is true, because if it is you are building a beautiful relationship with the soul of a beautiful woman that will someday hug you while she says I love you Dad.