On Playing Special-Needs Parenting Chess

September 25, 2020

Parenting children with special needs or complex medical needs can be like a chess game.

As I put on makeup, preparing to take my son to a new doctor, I remember so many times when I put on clothes and makeup I wouldn’t usually wear. That I wouldn’t have to wear if I had typical kids. To go to the doctor. To go to the IEP meeting with a new team at school. Dress like you can afford the most expensive special needs attorney in town, and know their name in case you have to drop it. Not that you could afford them, but they don’t know that.

A frumpy, stained T-shirted mom is easier to dismiss. Easier to disrespect. Shouldn’t be, but that’s the truth. That’s how it is.

Armoring up to go to the doctor. Blow out my hair. Knowing what I want for my now adult, now 18-year old, but having to dance around it, make the doctor think it is their idea.

After my hair is done, he tells me he wants to go in by himself today which sends a whole layer of panic through my system. If they push for an HPV vaccine today, for my boy who has no cervix, so help me God. No means no.

I’ve prepped him to ask for what he wants himself, have given him the steps. Prepped him on saying no to what he doesn’t want. Coached him on holding his ground.

PTSD is what it is. PTSD, dressed up, with mascara. Hair spray. Serious. Don’t fuck with me. And at the same time, friendly.

FRIENDLY! We’re pals!

It’s quite a dance.

I could write a list a mile long of how we, in my family, including my son, have been harmed and mistreated by doctors and medical staff. And I’m a nurse. Doesn’t matter.

I don’t play chess. Never learned. But I bet I’d be pretty good at it if I tried.

This breath in.
This breath out.

Off we go.

I’ll be in the waiting room.

~Nurse Effie

 Top photo: Sarahmirk / CC BY-SA (https://creativecommons.org/licenses/by-sa/4.0)
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26 Responses to On Playing Special-Needs Parenting Chess

  1. Andrea Mercier says:

    I propose that instead of diagnosing people with “Autism” alone that they need to categorize the symptoms that are tied to biology as such. Now not everyone who is Neurodiverse has neuropsychiatric medically related dysfunction tied to their neurodiversity. And this Neurodiverse perspective is a matter of viewing ones point of view as the only one to consider without consideration beyond that. I believe the problem I am reading here is that the perception by some people is a matter of really not having the opportunity to meet us, live with us, or see the lab reports or record the field studies of baseline behavior vs non baseline and what is in essense having a pathologic effect on functional living. A neurodiverse individual may be able to live a rather functional life but for others that neurodiversity can impede with functioning to the point of creating a pathological response that interferes with going to the bathroom, that interferes with attending to neurodiverse learning strategies. It is ok to have a rigid thinking pattern and perception; however I find that one type of Neurodiverse who have higher functioning are marketed and advertised by heavily funded industries to hide the other part of the picture that shows neurodiverse sever dysfunction. This is done on purpose and I propose the term “ableist” was a part of this marketing. Just as “anti-vaxxer” and “consipiracy theorist”. I have no choice but to accept the division that is created in society because I don’t want to waste my time convincing people that have not walked in my shoes. I have had the opportunity to see the other side of people injured neurologically by pesticides and herbicides and I have had the opportunity to see communities injured by these products and the whole community is happy to live continuing to use these chemicals and die by those exposures. I am sure some invented terms were made up for the ones who questioned it. History seems to repeat itself. Many people fall for these sorts of traps all the time. The only way people will ever understand the other side of the picture sometimes is to step into it themselves and sometimes even then it is not enough. And you know what that is ok. We cannot always convince one another.

    • Bob Wood says:

      Andrea Mercier wrote…
      “I propose the term “ableist” was a part of this marketing. Just as “anti-vaxxer” and “conspiracy theorist” … ”

      This statement is almost exactly like what racists in the deep south said back in the 1960’s about racism. Racism for them was fake news. 

      A racist is someone who does not like the differences in skin color. An ableist is someone who does not like the differences in human ability levels. Ableism is real to you if you are not able to meet the socially constructed standards of ability. It’s as old as racism. The Spartans killed children who did not meet the Spartan standard of physical ability. Now we just drug them or send electrical charges into their heads.

      Andrea Mercier wrote…
      “I believe the problem I am reading here is that the perception by some people is a matter of really not having the opportunity to meet us, live with us, or see the lab reports or record the field studies of baseline behavior vs non baseline and what is in essence having a pathologic effect on functional living.”

      About “the field studies of baseline behavior vs non baseline and what is in essence having a pathologic effect on functional living.” Who’s baseline? Ableist American? Spartan?  Baselines are not absolute, they are relative. They are about conformity.  And what is a “pathologic effect on functional living?  Is it pathological if I cannot wipe my own butt? Or is it a kind of difference that makes my life difficult and where I could use a little help?

      I think all this baseline, ableist nonsense started with 20/20 vision. Humans didn;t have this concept until Gutenberg printed his Bible. The new context of printing type size standards set in motion a social construct around ability to read that standard print size. This evolved to the point now where groups like Thinking Moms try to enforce their 20/20 version of “normal” onto every human ability. Compulsive much?

      Andrea Mercier  wrote …
      “A neurodiverse individual may be able to live a rather functional life but …”

      “May be able” followed by the condescending “rather functional life” is not only ableist but also elitist.  So go the incremental levels of ability according to the “correct” authority. i.e. fully functional, rather functional, marginally functional, until we get to pathological.  The fact is that both neuro-diverse and neuro-typical individuals live lives of constant change in their functioning. Their levels of function might vary by the day or week. But the linear minds of the majority prefer to believe in the illusion that these levels are constant while their illusion makes life for Autistics unnecessarily difficult. 

      Andrea Mercier  wrote …
      “I find that one type of Neurodiverse who have higher functioning are…”

      “High functioning” and “low functioning” are ableist measures relative to the arbitrary social standard of “correct” functioning.  These terms are static when the actual functioning level of humans is fluid. 

      The head honcho Thinking Mom here recently wrote that being gay (removed from the DSM in 1973) and Autism are not at all similar in terms of the reason they are/were in the DSM. She wrote as evidence of the dissimilarity that gay kids do not get IEPs. First of all, I doubt there were IEPs before 1973, and after that a school would be sued if they gave an gay student an IEP for being gay. It was a dumb example, especially coming from a “thinking” mom.  Gay and Autistic are connected in that they are/were medical diagnosis based in naturally occurring behavior/interest/impulse human variations. The DSM docs like to make differences into pathology when they are just differences. What we need to focus on are the challenging disabilities that result/resulted in things like higher suicide rates in both of these groups with different behaviors/interests/impulses. We need to embrace difference as diversity so young people can feel good enough about themselves that they don’t kill themselves. We need to stop stuffing the different kind of kid square pegs into round acceptable holes and calling it education or treatment. A lot of what well intention parents are doing is just like gay conversion therapy.

      • Andrea Mercier says:

        Bob Wood- I am not “insert label”. I accept my child’s “insert label”. “Insert label” is different for everyone and “Insert label” to me is not some term as described by someone else from some book or something else from somewhere else. Everyone’s “insert label” is just that. I accept everything about our son. I am sorry if I sounded “insert label” and I did not mean to sound that way. I will admit that sometimes I feel upset about the world the way that it is and I do wish to see “insert label” living alongside without the world trying to convert “insert label” into some machines where we are all the same way. I find that certain therapies need to respect “insert label” thinking and I see that some therapists are really trying. An issue of sanitation and societal constructs and norms must be followed or we lose our children.

        As I am trying to shape my lense to understand you, myself, and others ..I ask to please know that I am not a category and that I am not a label. Please know that when I read “insert person” I see “insert person” not something else. And when I see our son I see our son and some days he is not the same and this happens with “insert label” kids as well. I am his mom and I am with him everyday. He is different one day for various reasons and this is not because I want him to be someone or someway he is not. I do not want him to be anyone else than who he is. I accept who and how he is. I cannot follow the other comments on here and being compared to others due to my own neurodiversity challenges and I do have to agree that any conversion therapy on any level is wrong. I believe there is too much “labelism” in our world. I suppose if you took off the L it would be the same.

  2. Susan says:

    What I really meant to say when I replied to Bob Wood and which probably won’t be approved to be posted here:

    I’m just going to say it: I loathe know-it-all high-functioning people with autism. The ones who know all about parenting a child with a disability………but who don’t have children themselves and don’t know my child.

    Spare me the bullshit “ableist” label. Get back to me when you’ve raised a child with a disability, any disability, to adulthood.

    You are so bereft of empathy just in conversation, you clearly do not have empathy to advocate on behalf of what my child needs – not what you think he needs – what he really needs. You surely don’t have empathy to be my son’s caregiver.

    There are so few high-functioning people with autism who get it. If you know one person with autism, you know one person with autism.

    You can look in the mirror and know yourself. My son’s face is not in your mirror. Stop trying to pretend otherwise.

    Take your superior attitude and shove it.

    • Bob Wood says:

      Susan, you say “I loathe know-it-all high-functioning people with autism.” as if you are informing someone. hint- it’s obvious. You do not like how I manifest my difference in processing. Story of my life. How does it make me feel? Like you are just one more parent informed by your maternal connection with our child.

      You assume that I have no idea of your parenting struggle. Not only did I raise a spectrum child of my own but also raised spectrum foster kids. Mark came to me when he was 8. They labeled him “nonverbal” and medical term. I use the term of “nonspeaking”” because after two years Mark spoke to me. Nonverbal implies an inability. Non-speaking means it’s a choice.

      Susan, I hope my difference does not cause you too much discomfort. I hope you can get as comfortable with my expressions as I am comfortable with yours. And by the way, I am not a person “with Autism” just as my neighbor is not a person with blackness. They are black and I am Autistic.

      • ProfessorTMR says:

        It ISN’T always a choice. It’s not a choice for the child in this piece.

      • Bob Wood says:

        I post because hope is in knowing the choices are there. Authenticity is fragile but it is the best “medicine”.

  3. Jennifer says:

    Her “boy” is an adult with authority over his own healthcare – he should be able to get an HPV vaccine if he wants one!

    • Momma bear says:

      Her son may or may not be able to understand the consequences and risks associated with any vaccine. If he’s not neuro typical as mom says, any vaccine could do more harm (to any person for that matter). They don’t give informed consent at doctors offices for vaccines, and if at 18 his mom still takes him, that’s a clue that he still relies on her enough not to be placed in a position where he could be taken advantage of with his disability. She stated in the article that her family has already been medically harmed.

  4. Andrea Mercier says:

    Yeah, doctors and nurses are around for different reasons. Some believe in the system they work within and do not see outside of it and some are in it and do the best they can realizing its broken. In a way I do not see how that system is any different than many of the extremist groups. Society has this strong need to label. You can be a label if you want, you can choose to believe in the system or not. Even though my son has a label of autism and more (medically complex). I never believed in the ICD-10 coding system 100 percent. The system is a failure that fails to understand complexity science and sometimes plain does not care. The real disease is greed above all else and Hubris…and it isn’t just monitary. Human services, Health care system, Non-profit groups that are front groups to industry, Environmental organizations that are front groups for industry, the Justice Department, secret operation groups within government, media, the political system ( politicians ignoring people and cowtowing to “sponsors” and passing bills that hurt people. While I am upset about reading what I read here for many reasons I am going to say one thing to everyone reading anything posted in any of the comments and or reading posts: “be careful, be very careful” and “Advocate”. Be aware of those who play games and be Vigilant. Learn to be comfortable in your PTSD shoes. So many have this “label” so many more than moms of injured kids. It is only a “label” and you have a choice to work with it and learn about the autonomic/psychiatric state your in and learn the skills to adapt or reach out for strategies amongst friends and or professionals (some who do not help and some that do). I recommend keeping an open mind always because a bad experience from a professional is not the way they all are. Also I am not posting this comment to be over-interpreted, or over-read, or making any accusations, or inflammatory statements.

    • Billie Rubin says:

      The ICD-10 system, like current Electronic “Health” records are nothing but billing systems, and a major factor contributing to burn-out in health care workers. Don’t be surprised that your son’s health problems don’t fit into a coding system; the systems are only to enhance revenue, not provide anything approaching medical care.

      No, unfortunately though, on this webblog we are getting too far afield from the treatment of kids with autism, and providing help for their parents, and focusing on a whole slew of extraneous and, generally, superficial issues.

      • ProfessorTMR says:

        Who gets to decide what’s “too far afield” for “this webblog”? Certainly not you, dear. We focus on what matters to us, not you. You may find this hard to understand or believe, but we don’t care even one tiny bit about your opinion on what we choose to run on “this webblog.”

      • Bob Wood says:

        Just as being gay was removed from the DSM in 1973, Autism needs to be removed because it is an illness, a disorder only for ableists. Have you ever encountered an Autistic adult who wanted to be “healed”? All the disabilities in terms of abilities (that incite the ableists) must be cataloged and addressed as such. Everyone is unable at some point to do many things. If you follow the ASD “logic”, aging is a disease but it is not. End the frustration and the pain neuro-typicals inflict on Auutistics.

      • ProfessorTMR says:

        Yes, I have.

        And no one gets an IEP for being gay.

      • Billie Rubin says:

        Royal we, “Professor”?

      • ProfessorTMR says:

        No, dear. I am the editor here and my colleagues trust me to make most of the blog decisions, but I am not TMR. The blog represents the organization, not me.

  5. Bob Wood says:

    I rarely like what I read here but I loved Nurse Effie’s post. It’s a battle over difference and Effie is a warrior.

    Being gay was in the DSM until 1973. Now it is not. Being LGBT now is merely a difference, not an illness. Someday Autistic individuals will be seen as different, not diseased.

    However, Susan’s reply is standard “Thinking Mom’s” neuro-typical nonsense. Susan’s comments are conventional and conforming. Her words are very neuro-typical linear. “Do you really think your son, because of his disability, can make informed consent?” Wow Susan, you are an ableist (similar to a racist but about ability differences not skin color differences).

    As a spectrum person, I find this site generally to be very ableist. I have reposted stuff from here on neuro-diversity websites and all the Autistics on those sites agree that what is posted here is off because the “thinking moms” believe that maternal empathy can inform them as to what is happening inside their spectrum kid’s minds, and that is a false assumption.

    We live in a world where the neuro-typicals run the show by defining the acceptable social constructs. The result is we Autistics understand the neuro-typical mind because it is unrelentingly imposed on us. You neuro-typicals, on the other hand, never get to understand our neuro-diverse or spectrum minds because your energy is a seamless wall of conventional thinking that locks out any possible authentic understanding of our processing difference.

    Nurse Effie, we need a lot more friends like you and a lot fewer Susans.

    • Susan says:

      Get back to me when you’re an experienced parent of a child with a disability.

    • Andrea Mercier says:

      Bob, I see my son as my son. Autism is a label that is broken and some on the spectrum have biological co morbidities that are tied to certain states of mind the person is in. I can only say this because I have witnessed this myself. A certain substance or exposure and a child turns red, and suddenly awareness, perception, and extreme tic behavior ensues and sometimes an intolerance for sensory stimuli and some seizures. The child is not broken but the adaptation system in some children and adults is different. Also, the fact that we are in a world that allows toxins for so long with so much research on effects to our world and inhabitants this is creating a problem. Just because a person has co morbidities does not mean the provider, guardian, or mother view the he child as an illness or that autism is an illness. I find that I met someone who had high functioning autism in the past who was so angry people had lectures on medical co morbidities. It happens all of the time these comorbidities and they can be tied to changes in behavior, reactions and have real life physical events. I am hoping that you see the difference between those who are only trying to help there kids function with autism and co morbidities and those blaming and trying to find single blame and erroneous thinking. Like you I accept neurodivirsity and like you I may be on the spectrum myself and never tested. A distinction needs to be made between ASD with ID and comorbidities and those with ASD so that it will help society instead of cause confusion.

    • Andrew's Mom says:

      I would give anything in the world if MY SON (who also like to see the Dr by himself) could make his own decisions, and that is not abelist bullshit. He doesn’t even understand what a vaccine is never mind our family history of serious autoimmune disorders. It’s is unfortunately beyond is ability to grasp all because of good old autism. I love my son and he is amazing. A hard worker, and sweet person but stating a fact about my loved one is not ableist.

    • Billie Rubin says:

      Being autistic isn’t a disease, it is merely a different way of interacting with the world.

      • ProfessorTMR says:

        It isn’t “merely” a different way of interacting with the world. There are documented physical differences that mean that IEPs or at least 504 plans are necessary, which Bob is all for. Except that IEPs are only for children with “disabilities.”

      • Jennifer says:

        Well said, Billie!

      • Bob Wood says:

        “Being autistic isn’t a disease, it is merely a different way of interacting with the world.”

        exactly

  6. Patti says:

    I hope it was a good appointment with no nasty surprises.
    I used to do the same thing for IEPs before homeschooling. And I still get the blowout before the appointments and do the makeup I never wear except a couple times a year.
    I could’ve written this with the exception of the shots. Pretty sure my kid would run out screaming they were trying to kill him – and that would be accurate.

  7. Susan says:

    I so get it. Do you really think your son, because of his disability, can make informed consent? From your essay, I’m going to say no. Love that you want to foster his independence. The doctor’s office and hospital is probably not the place, though.

    My mom was a nurse, too. She got taken in more than once by doctors and nurses during doctor visits. (One doctor enrolled her in a clinical study he was performing for a drug-maker without explicitly stating that would guide the course of his treatment of her.) As she got older, she often experienced disrespect from healthcare workers, too. (She had experienced a reaction to dye for imaging. Staff wanted to continue using dye in future imaging and give her an antidote [antihistamines?], even though she objected.) Eventually, she insisted on taking a family member in with her to all doctor appointments. (My sister had to be very assertive telling staff “NO dye!” for them to respect our mother’s wishes.)

    Even though I tell all doctors and nurses and have printed it (also initialed and dated) on all the paperwork that none of us take any shots, that doesn’t stop all the office staff from asking at every single visit whether my son has had a flu shot. I simply say, we don’t take shots. My son, being generally agreeable, would probably say yes if asked if he’d like the shot for ____________ [fill in the blank with any vaccine name] even though we’ve explained to him that shots are the most likely reason he is disabled.

    To each his own, though, and I sincerely wish you the best of luck at your son’s doctor visit.

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