Dear Lindsay:
Sometimes people leave comments or use the contact page and don’t leave their email address. I wish you would, I often would like to personally respond.
Lindsay left the following comment on this post (probably referring to item 11, a particularly rude comment I made about social workers and school nurses) :
I really enjoy reading your blog, however, what do you have against social workers? I know several people, including myself, that are going to school to become a social worker. I realize that you have had a few bad experiences with social workers, but please don’t lump us all into the same bad category.
I will agree that, in general, stereotyping is not a good thing. To “lump” all of any group into a single category is generally, but not always, a bad thing. For instance, I do lump all white-supremacist-skinhead-nazi-sympathizers into one group as I do hot-goddess-like-blond-women-who-think-Single-Dad-is-cool.
I will admit that there have to be some good social workers. But, that being said, if I were standing before the holy one, blessed be He, and had to argue to save the world for want of 50 righteous social workers, or 45, or even 10, I am not sure that Pearlsky would not end up a pillar of salt.
You see, Lindsay, in my direct personal experience, I have only had awful interactions with social workers. From the first one asking me “How do you feel about having a severely disabled daughter?” to the last one offering no help what so ever for a struggling goddess. Let me give you an example, a true example that I witnessed first hand.
There was a woman I knew from the early intervention program that Pearlsky and I went to weekly many years ago. The woman was a fantastic mother, but struggling. She was an immigrant, had four children, one of them rather severely disabled. Her and her husband struggled to find the American dream, really good people. We all kept telling her she needed a weekend away, even offering to watch the kids, do whatever it took. Finally, after a long time, she was able to get it together that her and her husband would go for four days somewhere, the first trip ever. Her mother would be with the kids. Her mom recently had immigrated and did not speak English. (Jumping ahead of me at this point?) Of course there is a crisis with one of the kids. One of the “typical’ kids, and she takes all four to the emergency room. A social worker gets involved and of course does not speak the language. It took three days, and a judge castigating the social worker, to get the kids back. Yes, social services just took them. I was in the court room. This happened. Because of a social worker. Because a young boy broke his ankle.
In my humble opinion, here is the problem. I have never met a social worker who has a disabled child, let alone one like ours. There is no way to conceive of what we do, what our lives are like. How can one offer help, offer an opinion, make a decision, on a situation that one cannot possibly comprehend? Yet, for reasons I do not know, they always think they do “get it.” My mother does not get it. The woman next door with the two typical kids does not get it. Some of the nanny’s don’t get it. I do not get how a social worker can do her job for me without getting it. Without understanding 24 hours of Single Dad and Pearlsky’s life.
Lindsay, if you want, we can have a serious talk about “perspective.” Being told that the thing you have always wanted, and loved most, would never leave the neonatal ICU alive … holding a one year old through the night as she seizes for hours on end … sitting in a gliding chair with her racked with fever and seizures looking at a loaded pistol on the table. Yeah, perspective. Do you get it? Have you been there? And you are going to ask me, in public yet, “So, Single Dad, how do you feel about having a severely disabled daughter?”
I wash my naked curvaceous 18 year-old daughter. Head to toe, all over. I dress her. I get her menses all over me sometimes as well as her poop and urine. I sleep next to her when she is ill, or racked with seizures. I put on her bra. Daily. And take it off. You have a problem with that? Many people do. And many of them are social workers. Social workers without a clue. Social workers with the power of a pen stroke to take Pearlsky away from me due to either their own ignorance, prejudice or lack of understanding.
I blog for many reasons. I have found that many people seem to learn stuff from this blog, or tell me that I am helping them in some way. I honestly hope, and pray, that I can enlighten some social workers, or future social workers such as you, as to what this population is about and make you that much better for it.
There is one social worker I would love to hear from. I know that she has several social work degrees and now she has a child like ours. I will send her the link to this post and hope she comments or will even write a response post.
Thanks for the comment, Lindsay. Now, take me to task, seriously.
Your honesty is like a kick in the gut but I wish I could be more like you. I hide behind a smile and a “We’re doing ok”, and I really, really don’t want to. I think I fear the comments like you sometimes get. But I need to “grow a pair’ and deal with them. I’m not helping anyone by pretending.
Thank you…
I have a friend who, when asked “how are you doing?” answers “I’m doing.” To “how are you?” she says “Still breathing” or “still here.”
Love her honesty. You can steal those lines if you want.
I’m a social worker- I work at a county providing case management services to kids with disabilities, and their families. Mostly their families, to be honest. I read your blog (and a few others) for the perspective. I don’t have any children, let alone one with severe disabilities. I have no idea what it’s like. I try to be empathetic, but how do you do that when you have no clue?
Sometimes I am useful to the families I work with- I can find the resources they need to care for their children, and the funding they need to obtain those resources. Sometimes I am worthless- for whatever reason, the service they need doesn’t exist, or I can’t find it, or if I can, I can’t find a way to pay for it.
And I’ve got to say, I would hate it if the roles were reversed. A minimum of twice a year, I have to go into people’s homes, check up on how they’ve spent money, ask intensely personal questions about behaviors and medical status, and just basically be a nosy pain in the ass. Some people don’t mind, especially if I’m getting them the services they need. Some people do- and I’d be one of them.
I have a ridiculous amount of power- although I can’t personally take kids away, I can make the reports that will. I can rescind grants. The recommendations I make- or don’t- can have far-reaching consequences that I may never even see. I try to wield that power well, but I know I fail sometimes. I know that instead of helping, I can be a cause of stress and frustration.
So… I’d never take you to task for hating social workers (not that you invited me to, of course). For a parent like you, who researches the hell out of things, who is an incredible advocate- I have nothing to offer. You already know what’s out there and how to get it. My signature on a piece of paper just slows the process down. The system, it’s broken. It’s beauracratic, slow, and frustrating. I have seriously considered a career change. But I stay because sometimes I can help. I just hope I help more than I hurt.
C.L., you probably help a bit more than not simply by virtue of your self-awareness and honesty in the midst of a very faulty system.
If the C.L. above is who I think it is then she most definitely, from what I know of her, ‘gets’ it.
And SD, this post? Just makes me want to say again how much I HEART the shit out of you. That’s my new favorite phrase right now, could you tell?
I think a key ingredient to being a good professional in the so-called “caring professions” (I don’t know if you use that term in English) is some fucking humility. I’m a nurse (not a school nurse, thank God), and a patient and a family member to a patient, but that doesn’t mean that I really understand what my own patients and their families are going through with cancer and treatments. I have a bunch of knowledge about the situation and a bunch of clinical abilities that I can use to help them, but they’re the ones who have to live with the situation. My job is to step up and help them do the things they can’t do themselves, either because they lack the knowledge or the resources or are just totally overwhelmed. Duh. Humility, I tell you.
Is the complementary partnership approach just not the norm in the US or is it because you guys are so famously litigious? We’re definitely not perfect here, but these psycho social workers and school nurses seem above and beyond what you’d expect. (Medical interns are dumb everywhere you go though.) I don’t understand why these people’s coworkers aren’t ripping them new ones. Is the hierarchy just so rigid, or… WHAT? Why is it like this???!!!
Rebekka, in my particular niche of the profession, I do almost all of my practice alone- my coworkers (even my boss) never see how I interact with the families I work with. So, even if they wanted to, they couldn’t rip me new ones.
But, I’ve also worked in places where the “company culture” is… yucky. One in specific was very “us” versus “them” (staff vs. clients). Power was wielded poorly, and I did not think it benefited the people we worked with. Unfortunately, once that attitude is entrenched, it’s VERY hard to overcome, and I ultimately left because I couldn’t stand being part of that.
@Rebekka The bureaucrasy here is so thick that partnership (in my experience) tends not to happen. Everyone setting policy is so preoccupied with proving themselves right and shifting costs onto someone else that the actual care is a fairly low priority. Humility exists on a limited basis amongst care providers at the very bottom of the hierarchy, but not because they are trained to it, because it is what they bring because of who they are. More bottom level care providers are arrogant jerks.
I considered pursuing a degree in social work, but realistically the amount of assistance that can be provided is so limited (in my community anyway) and the amount of harm that can be accidentally and inadvertantly caused is so great that I would probably be doing harm more than I did good. I can better serve the community as a health care provder who donates my time and as a political advocate. No matter my wishes or my good intentions, changes to bureaucrasy tend not to come from within that bureaucrasy.
On a related note, regarding helping professions . . . I spent two years teaching at an inner-city school in the Bronx, in the late 90’s. It was huge — 4 thousand students, most of whom had major “issues” at home — and looked and felt like a factory. The kids were shuttled around from class to class, changing teachers every semester, with only about 15 overburdened guidance counselors to oversee whether they were actually getting an education, which most of them were not. The other 30 teachers in my department (English) were mostly close to retirement and VERY cynical, with only a few exceptions who were genuinely caring, compassionate educators (either because they were newer, or because somehow they had maintained their idealism all those years).
Anway, the Assistant Principal was known to be a biotch. Still, I was agog when this happened . . . I was sitting with her and two other teachers in the teacher’s cafeteria, and I mentioned that it’s a pity there was no student lounge, and that it was against school policy for any student to have a “free” period — they HAD to be in a class or at lunch at all times. I said that I know we had a tough population and that there was no money for something like a lounge, but “I feel bad that, as teenagers, they don’t have a place to go to just unwind and get away from all these crowds. If a kid needs to rest or just think quietly there is nowhere to go.”
The other two teachers were like “mm hm” as they ate their lunch, but the Assistant Principal said, and I quote, “I don’t care about that at all. The students are the least of my concerns.”
Nice, huh?
From Rachel:”but these psycho social workers and school nurses seem above and beyond what you’d expect. (Medical interns are dumb everywhere you go though.) I don’t understand why these people’s coworkers aren’t ripping them new ones.”
This is what I don’t get about the school head nurse you have had to deal with. She is so clearly insane and none of her “underlings” seem to notice or care or complain…if not to her face, then to somebody…It’s like she’s a dictator with a gun to everyone’s head. Why are they all so afraid?
I admittedly work with a very different population. But in the nursing home where I work, I feel like I am surrounded by wonderful, caring, compassionate social workers. They care for both the residents and families in a way that heals relationships and enables people to have real quality of life in their final years.
Maybe the difference between my experiences and yours is that old age is a universal condition. We will all (God-willing) get old. The social workers here are more able to “get it.” They are or have been the children of elderly parents. They see themselves in the eyes of their clients.
I have an MSW, which I’m using at this point only with my family. I have always preferred to work in collaborative environments- my favorite was the psychiatric ward of a local hospital,where the most important part of my job was discharge planning, along with arguing with insurance companies.
The head social worker there was fabulous, very caring and willing to go the extra mile. But I could see how easy it would be to just do the least possible, as patient after patient came through. Part of the reason I don’t work in the field anymore is because I’m not sure I have the energy to do the job right and still have enough for my family.
BTW, I found myself in a scary position myself as a parent of my autistic son. When he was in preschool, he broke several bones in succession. Basically, once he broke the first one, he was off balance but not aware of it, so he didn’t compensate- he just kept going full-force.
On the advice of friends, we went to separate hospitals for the breaks so social services wouldn’t end up on my doorstep. Because how many people understand that with some kids, no matter how much you watch them, they can fall and hurt themselves right in front of you? (BTW, he was eventually diagnosed with low bone density, at age 4. A scary number of kids have been taken away from their parents because of multiple injuries due to this problem.)
Thanks for all the answers. Maybe part of the difference is that there is universal health care here, so maybe we are not as obsessed with bureaucracy and financial butt-covering?
Also true is that I work at a hospital so we are a large group of different professions working together… But you’d think that a school-type environment with lots of aids and teachers would be similar, so I still don’t understand how this school nurse gets away with being such a monster!
I thank you for addressing my question SD 🙂 I did email you a few weeks back when you wrote this; I know you are very busy but I hope you did have time to read my email.
This blog should be mandatory reading for nursing and social work students.
I remember reading this post and wanting to comment on it, but never did…glad you brought the subject back up. I wish I could meet you, so you would know there was at least one more social worker that does “get it”. I am a social worker by degree, but I know there is a lot of shit that goes down that I would never agree to do. I have worked in many different jobs, from Hospice to Head Start, but have never and will never work for Child Protective Services (partly because my asshole ex who doesn’t get it works there, and partly because I could not take someone’s child from them.) But I do completely get it. My daughter is 12 and has severe autism. She is non-verbal and needs 24 hour care. I realized 2 weeks ago (thanks to my mother pointing it out), that I have become bitter. I take pride in the fact that I usually am a very soft hearted person, but working directly with parents in my community, I have come across many who feel that their quirky little kid that has been diagnosed with autism is somehow such a burden to have. I have to take a step back usually and bite my tongue. I made the comment to my mom about my cousin’s newly adopted daughter that is “showing some signs of autism”, that at least she can have a birthday party for her without her having a meltdown and biting one of the party goers. I didn’t even feel bad for saying it. I feel no pity for folks with children with any type of disability that can function normally in society. It’s heartbreaking. I even feel bad ranting on to you about this, SD, because I know that you have even more going on with Pearlsky. You may even feel the same about me as I felt toward those other parents. But, sometimes I feel like I am the only one in my life that “gets it”. My parents don’t really. They pretty much feel sorry for me and the “burden” I have to bear. My ex REALLY doesn’t…even more of the reason that he is my ex. After being told twice that we should just give our child up for adoption and let someone else try to do better for her, I checked out. My current husband (Superman) is about as close to anyone I know in my life that “gets it”. He jumped in from day one and took on the role of daddy for my little girl. He has held me when I cried about things and supported me through dealing with her father and his coldness. He’s amazing. I don’t know what I’d do without him.
So now that I’ve ranted on about all this, please know that I get it and there is one social worker out there looking out for kids like ours…
Thanks for listening.
P.S. I’m also 9 months pregnant and a little on the emotional side 😉 so thanks again.