Posts Tagged ‘Mental Health’


Falling Down the Rabbit Hold

Falling Down the Rabbit Hole: Image found on Baby Steps on blogspot by Katelyn Elizabeth

What do you do when you’re falling down the rabbit hole, and the one person who should be able to pull you back is someone who seems to keep dropping pianos, shoes, lamps, couches, teacups, hats, dinner plates, and potted plants down onto you?

I need a new psychiatrist. Beginning and end. I’ve lost all loyalty because I finally realize that the amount of time I’ve spent there can’t be a reason I stay. Reminding myself that she used to be a great doctor with great advice can’t be a reason I stay. Liking who she used to be can’t be a reason I stay. Feeling in my gut that maybe she has something wrong in her own physical health or neurological health can’t be a reason to stay. In the past two years, she’s gone from: a great psychiatrist; to quirky; to OMG Who Is This Woman; to I’m Going To Throat Punch You Hard If I Stay.

The only reason I’m still there is because I’m having trouble finding a new psychiatrist and I need someone who will prescribe the two medications I take. I’m warning anyone right now, there will be cussing. If you have sensitive eyes or tend to clutch pearls when there’s an F-bomb then this may not be the post for you. I think there are more F-bombs in here than I’ve said or written in my entire life. I know God forgives me because he loves me. Baby Jesus might have a hard time with it, but he loves me too so he’ll eventually forgive me. As soon as my stove works I’ll bake him some cupcakes as an appropriate apology.

The reason I’m writing this post is because I needed to get it all, or most all of it, into one spot so that I can see it and realize that I’m not imagining things. I’m also writing it because it’s important for people to see others who are having issues with mental health providers that they’re not alone. Finally, it’s important for others who are experiencing mental health issues to see they’re not alone in having mental health problems, and it’s okay to talk about issues surrounding mental health and the mental health industry. We have to be the ones to change how we’re treated. We have more of a voice than we realize. We CAN self-advocate. We CAN’T wait for other people to do it for us most of the time.

 

Reasons To Find A New Shrink:

  1. She likes to talk about herself for most of the appointment and you still have to pay the co-payment
  2. She’ll even go so far as to walk you out of her office into the break area to show you all of her vacation photos to
  3. She sometimes confuses your file with someone else’s file
  4. She confuses YOU with other patients to the point of calling you a bad mother; too permissive; passive aggressive; not a good example to my children; and you know for sure she’s not talking about you when you’re ready to cry when she finally says that I’m “not strict enough especially my son” except, well, I don’t have a son
  5. She tells you that you have unreasonabe, unattainable high expectations as a complete and utter perfectionist about anything and everything, being rigid and essentially comparing you to Mommy  Dearest when moments before she told you that you were too permission, passive aggressive, not strict enough with your non-existent son, etc.
  6. I’ve been seeing her for 11 years now and she apparently hasn’t heard a word I’ve said
  7. She can’t read her own handwriting most of the time in my multiple files
  8. She complains about how Americans are very petty with the whining they do during sessions
  9. She mocks Americans for “all of the medications” they need when she figured out the proper foods and spices to take to get of any and all illnesses because apparently, ALL ILLNESSES ARE IN YOUR HEAD AND YOU CAN GET RID OF ANY PHYSICAL AILMENT IF YOU ONLY CHOOSE TO
  10. She used to consider herself a one-stop psychiatrist: Talk Therapy plus Meds-If-Needed plus Natural Methods and skills
  11. Not any longer; She seems to consider Talk Therapy beneath her and a waste of her time EVEN THOUGH SHE’S GETTING PAID
  12. She forgets to tell you diagnoses she’s made and lets them slip out such as diagnosing Fibromyalgia within months of beginning therapy with me but waiting until I told her when I got the diagnosis from two other doctors with, “Oh, I know, I diagnosed it seven years ago! See? It’s in your file.”
  13. In spite of physical, documented, scientific, medical proof with DNA and at the cellular level narrowed down to an actual thing of its own…
  14. AND Fibromyalgia having an actual physical MEDICAL diagnostic code of ICD-10 Fibromyalgia M79.9
  15. She thinks it’s a junk diagnosis and purely caused by uncontrolled anxiety a.k.a. it’s all in my head [when she told me that last appointment I said, “Yes, you’re right… the pain I feel in every nerve and cell and fiber in my body is interpreted in my brain and it destroys grey matter. And THAT is in my head but not the way you think it is.”]
  16. This is relatively new: She thinks that childhood traumas should simply be “let go, forgiven, and forgotten” and that’s the path to happiness, especially if you simply look at the situation from the point of view of the person/people who abused you
  17. She used to be nice to work for, based on observation; now she goes through office assistants like Post-It Notes
  18. This is very, very new: She thinks that the way to heal yourself is to simply choose to be happy; choose to never have anxiety again; discover the secret to perfect health and you’ll never ever be sick again and she has found the secret to complete health and happiness but SHE WON’T SHARE THE SECRETS, GUYS!
  19. She’ll share every detail of her life but SHE WON’T SHARE THE SECRETS TO COMPLETE HEALTH AND HAPPINESS!
  20. WHAT THE ACTUAL FUCK?!?
  21. I think she’s closing in on 75 and possibly flirting with Dementia because she’s had a complete personality change since I met her and it came on suddenly within the past two years
  22. She holds opposing viewpoints in the same conversation, sometimes the same sentence

 

At least she’s stylish?

Maybe I expect too much out of my psychiatrist.

That would be the old me talking. That would be the old me questioning myself and my  judgment. I may not stand up to her as much as I ought to, but I’m finding that the more angry she makes me the more I’m speaking up. For a while I thought that she was testing me. I thought she was saying some rude asshole things to me to get a rise out of me to see how I would handle it and if I could control my anxiety visibly. Telling me that pain is all in my head, searing screaming pain that requires pain management plus back pain due to injury, is really all in my head and reliance on pain meds is why pain increases. I reminded her scrawny ass how I was completely without pain meds except for occasional Advil for 36 years and she brushed me off. I was SEEING HER BEFORE I EVER TOOK PAIN MEDS. She knew the lengths I went to with naturalistic methods.

I reminded her of all of this:

 

“Of course the pain meds work, you want them to work. You’re reliant on them. It’s all psychosomatic. If you could just control your anxiety and eat properly, eat vegetarian, you wouldn’t have any at all. You choose to be this way.”

“Doctor, I’m vegetarian. I use yoga. I do everything right and I still had emergency room level pain. No meds equals level 10 pain.”

“Of course! Because you don’t know any better! You’re dependent on those medications because you don’t know any better!”

“I’m dependent because I want to live and not be suicidal. I’m dependent, not addicted. As a doctor you know the difference. I’m not on anything addictive. But I depend on my medications to work, and because they do, I rely on them and depend on them to keep me healthy and productive.”

“Why are you so argumentative today, Jessica?”

“My session is over. Do you have my scripts?”

“Yes, don’t forget them. You clearly need them. What are they again?”

 

Nope, she’s just turned into some strange, rude, sometimes mean, forgetful, immovable asshole.

I don’t really have many expectations.

I certainly don’t expect that if you advertise yourself as a talk therapist that you should then tell your patients they ought to find a therapist in addition to meeting with her because she prefers not to deal with it. Right. Separate my services so that I have to pay more on a very low income with a tight budget.

I just… I can’t. I’ve lost all of my even. Gone. Withered away.

It’s funny how in the current culture, expecting kindness and honesty are”high expectations.” It’s funny how when you tell someone exactly what it is you need, want, or expect, their response is one of confusion. Now… this following conversation occurred a year ago with The Mister. I remember this conversation well and I’ll simply refer to it for cake-making purposes this year so that the conversation need not occur again regarding cake.

 

“Honey, would you like chocolate or vanilla cake for your birthday?”

“What do you mean? Why go to the trouble?”

“Because I enjoy it and it’s less expensive. Plus the kids want to help. So would you like chocolate or vanilla cake? Or another flavor?

“What? What do you want from me?”

“WHAT what? I want you to tell me what flavor birthday cake you want. I’d like you to do it kindly. That’s all I expect.”

“Oh. Can you make chocolate chip cookie cake? It’s kind of… my favorite.”

“Sure thing. That’s all I needed to know. I love you.”

“Love you too. I have things to go do.”

 

I don’t know if I forgot how to use the English language with my cognitive impairments thanks to ICD-10 Fibromyalgia M79.9 😉 but this isn’t uncommon throughout weekly interactions. It can’t all be me. It’s like people forgot how to interpret language, and their receptive language skills are just dead. I don’t think my expressive language skills are totally shot yet. I know I can be wordy but most of the time it’s in an effort to be sure I’m understood. I try to make sure that my expectations are clear. I guess that makes me a control freak.

I know that not all of my expectations will be met. I don’t expect all of my expectations to be met. They’re just expectations. I’m fine as long as I know that best efforts were made. Best efforts and truthfulness are huge. So is responding to me when I say something. Acknowledge me when I speak. Acknowledge my presence. When I call you, when I say your name, don’t call back “WHAT?” in annoyance or stare into space. Come to me. Look at me. Treat me like a person. That’s a reasonable expectation.

That all said, there are some jobs that you would think have established expectations built in and there are standards for the field that would be observed. A code, even. I know that many psychiatrists are “only prescribers” and don’t offer talk therapy but many, many, many do and so when they advertise their practice that way, then there are reasonable expectations of what that job entails.

Hence:

 

Reasonable Expectations To Have Of Your Psychiatrist:

  1. Listen to your patients more than you speak because that’s your fucking job
  2. Remember that the appointments are about your patients and their lives, because that’s your fucking job
  3. Appointments are not time for the Dr. Whackadoodle-Pants Show where you show your patients how much better your life is; It’s appropriate to sometimes draw a vague comparison to your own life but your patients don’t need or want to know about your personal life because sharing every aspect of your personal life every chance you get is NOT your fucking job
  4. Offer advice, tools for coping, and emotional support because that’s your fucking job
  5. Discuss various additional options for self-regulation with Depression, Anxiety, Mood Disorder, and other psychiatric issues because that’s your fucking job
  6. Discuss pros and cons of medications because that’s your fucking job
  7. When your patient tells you that a particular medication gave her A, B, C negative and/or allergic reactions you listen, take it seriously, and you report it because that’s your fucking job
  8. When you make one or more serious diagnoses of your patient, you TELL THEM ALL OF THE DIAGNOSES like a fucking boss because A. That’s what they’re there for and B. It’s your fucking job
  9. When you feel superior to your patients, as if your patients are whiny complainers, and you can’t get your shit together enough to have the correct files in front of you, close your office and quit your fucking job

 

Really.

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I’m having some Cognitive Dissonance. It’s making my head all ‘asplody.

Cognitive Dissonance:
the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.

Like many people, I sometimes have trouble reconciling how some people I know can say and do the things they do, and still be the people I’ve known and loved for so long. Others are, well, just as I expect them to be. It’s easy to figure out what to ignore and what to address. I can figure things out and ignore others because I’m a grown ass adult.

Then there are the people who are supposed to be helping me, like, well, doctors. People I pay to pay attention to me even if I’m trying to find myself or vent or get advice or just work out whether I need a mental health med tweak. Like my shrink. You’d think after 10 years she would know something about me by now. In our last appointment it was like she completely blindsided me on her opinion of me, or she grabbed the wrong file and was describing someone else. I actually called her out on it, but she shushed me. I’m a grown ass adult and she shushed me. I pay her, and she shushed me.

I was explaining some parent-teenager issues I was having, and advice on how to handle a situation. I needed some reassurance, but also some actual advice on what to do. Usually she gives an honest critique and a solution, and then tells me that I mainly have things under control and I’m a good parent and not to doubt myself so much. She’s even critiqued that I need to relax the discipline because I’m too strict, I hover too much, while still doing a good job teaching independence. Yeah, conflict? A little dissonance?

Instead:

“You know, there is this pattern with you. All the time you do this. You’re so interested in being your child’s buddy and needing to be the therapist of all of them and you’re so lacking in discipline. You’re not strict at all. You need to learn to be more disciplinarian and stop being the friend.”

I told her:

“You’re kidding, right? You told me the opposite in the last several years of visits and if you talked to my kids right now they’d all tell you I’m very strict. They’ll all tell you I’m not the friend-mom, I’m the Mom-mom.”

“No, no, you’re wrong. I see it in the way you interact all the time. Whenever you bring them in, every time. You’ll see when you bring them in next time, I’ll show you.”

Except I haven’t brought my children with me for at least 6 years. We don’t do family appointments. We have no appointments planned for any.

I think it’s time for a referral to a new shrink. One who doesn’t mix up files and patients, one who pays attention. She used to be fantastic, I’m telling you, but over the past three years she’s become more scattered and said more and more ridiculously weird things. I can’t write them off any longer. I’ve stayed because I need her to help with prescriptions.

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This came to my attention on Frday of last week, and I’ve been trying to write something that isn’t using profanities every other word. I’ve had about 60 drafts. [There is a new edit at the bottom of the post]

There’s a YouTube video called Autism Mom FURIOUS is over Steve Harvey’s comments – 3.26.15 – YouTube that brings attention to something despicable, something that she has every reason to be furious over. Something that I’m furious and sickened over.

Steve Harvey used his radio show as a comedy platform (as Sister Odell) to make fun of disabled adults attending Church.

I’m not being overly sensitive or too politically correct. If you were to tell me that, you’re defending his actions and diminishing the lives of disabled individuals everywhere.

I’m not infringing on anyone’s right to free speech to call out a comedian’s, or anyone else’s, behavior and speech. This may be cliche at this point, but if he has the freedom of speech to behave badly and speak in a degrading way about disabled people and laugh like a fool over his own (lack of) cleverness, then he’d better be damned sure to be ready for others to use THEIR right to free speech to call him out.

His words were like acid, caustic and issuing a damaging blow to the disability movement. It tells people in cultures where shaming and being embarrassed about their disabilities and their disabled family members that it’s appropriate and even “funny.”

It tells people that those who can’t always speak against this very same sickening attitude that the world is not even attempting to change to be more sensitive, let alone accommodating, to them.

It tells them that this hatred, being thinly veiled with so-called humor, not only exists in their own homes with family members, but likely at work with employers and co-workers, with neighbors… and out in the world in the media and with other people in the public eye that are looked up to for heaven knows why.

It tells disabled children in school that the bullies who claim they’re just joking, using humor as their mask, will be allowed to get away with it because they’re not really doing any harm. And no one will do anything until someone commits suicide; then everyone blames the child’s parents for not realizing how disturbed s/he was in his disability and why didn’t the parents get him/her the right help or realize how mentally ill they were before s/he committed suicide, when the real issue is that demeaning disabled people and making them Less Than Human is damaging.

Disabilities do not make disabled individuals Less Than Human. They… we.. are fully Human. We’re simply different. And in the words of Temple Grandin, disability (although originally from the point of view of Autism) merely means Different, Not Less.

It’s not unrealistic to expect that some things should be completely off limits as jokes. It’s more than “in poor taste.” We can take poor taste. What Steve Harvey did is cruel, bullying, and calling it comedy somehow gives it free license to say truly hurtful things and it shows exactly how he feels when he sees someone with Autism or similar disabilities that have nonverbal learning disorders and additional conditions.

Calling it comedy means that some people will repeat the so-called jokes because it’s “funny” and of course funny means that people won’t be able to conceive of the idea that it could be hurtful. They’ll repeat it because they’ll have reinforcement that attitudes such as Steve Harvey’s about disabilities and disabled individuals are acceptable and correct. You know, because we’re the ones who are humorless and touchy and overly sensitive.

Those attitudes are not acceptable. Not. Acceptable. But I suppose with Steve Harvey being who he is, I shouldn’t be surprised.

I’m disgusted and sickened. This is the sort of attitude that I feel I’m swimming upstream through chunky peanut butter to end. I’m allergic to peanuts.

No, Mr. Harvey, there’s no way you’re getting out of this with anything less than some very public reconciling to do as well as some reconciliation of the divine sort.

Share. Please. Share that link. Listen to what Steve Harvey thinks about disabled people from his talk show. Then boycott him. If you can’t do that, then write to his producers and tell them exactly what you think about his behavior. Let them know that if you were a fan, you’re not any longer. Let them know that if you hadn’t watched or listened before, there’s no chance in hell now.

More importantly: If you ever have behaved or spoken in a way that’s degrading to any individuals that have any disabilities at all, please stop. Think about the damage you’ve done and are doing if you don’t stop. You don’t know who has an invisible disability that hasn’t come out to you about it, so you don’t know who you’re harming. Be an ally instead of the villain.

#BeAnAllyNotAVillain #FlashBlogBoycottSteveHarvey #BoycottSteveHarvey

[EDIT: I really didn’t want to add what it was he said because I think if you watch that video above, she illustrates what’s wrong with what he said. But I should have included that he joke was made during his morning talk show on March 26th as his character “Sister Odell.” He has since apologized except that his apology wasn’t really an apology. It was a “y’all can’t take a joke” jab.

It started out on Facebook as,

“To everyone, please accept my sincere apologies. It was not my intent to hurt anyone.”

He should have stopped there. That would have been perfect.

He continued with:

“Sister Odell is a made up character, she is not real and my intent was not directed at any other real person. And most certainly was not directed at anyone you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were. DON’T TRIP HE AIN’T THRU WITH ME YET.”

Apology? Do you see what he did there? Exactly what I said he’d do. He excused his behavior. He blamed those offended in the disability community, for being offended that he said offensive things he should have never said. Under the claim that it wasn’t really him but the character he was playing.

When you apologize to anyone you’ve offended, you simply apologize and you don’t qualify the behavior. You don’t excuse the behavior. You don’t turn it around and blame the massive group of people you offended for being rightly offended.

This was a non-apology.

How does one exactly blame the fictitious character that one writes and plays? It’s not MY fault, it’s Sister Odell’s fault for making fun of someone that doesn’t actually exist.

No, it doesn’t work that way. It can’t.

Those “jokes” only barely thinly mask a very real opinion. He wasn’t being sarcastic in the jokes, using them to describe a behavior about disability bigots that he was disgusted with. He was the one making fun of disabled individuals. It doesn’t matter if it wasn’t directed at a specific individual… that makes it even worse because now we also know what his stereotype of a disabled person looks like. They’re all intellectually disabled, unable to speak, unable to control themselves and their bodies, unable to control the sounds coming out of their mouths, looking foolish.

This is what such “comedy” perpetuates. That a thin mask of hate of disabled people and their disabilities, and hatred their audacity to be disabled in public, can be called comedy and therefore not be considered hate speech or discrimination. No, if it’s comedy, it couldn’t possibly be a mask of hate and discrimination.

What saddens me is that there are people commenting on his pages that they are or know someone close to them (like a son or daughter) who is disabled, and not only are they not bothered but they found it funny too. They want him to continue, and they support him and believed an apology was not necessary. That anyone offended had no reason to be offended and basically, we’re all party poopers without a sense of humor.

That’s what couching hatred of disabled people in humor perpetuates. Not acceptance, not a desire to learn more, not even tolerance.]

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A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

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There’s a catch in my throat that won’t go away.  It’s as if my body is currently set to the default of Ready To Cry.  I laugh a little more loudly than I should at things that are funny… or are trying to be funny.  I laugh at every silly thing my daughters say and do, even if it annoyed me before Friday.  Laughter sounds and feels strange to me, right now.  It feels out of place.  It feels wrong.

Today it’s a drizzly, freezing cold day.  It actually feels like the weary world is weeping to remind us to slow down for a while.

At the same time, I know that for my children I need to keep my smile.  I can’t hide it or be stingy with it.  I can’t jealously guard my children and tuck them away from the world.  I can’t let my anxiety get the best of me.  I need to show them that even if we don’t feel especially happy right now, we can still feel joy and anticipate happiness in the near future again.  Maybe even now.  But then again, I have that luxury.  I can pick up my eldest daughter from school and get my other two daughters off the bus.  There’s no one to tell me that I can’t take them home ever again.

As a human being, Sandy Hook weighs heavily on my heart.

As a mother to a seven year old, Sandy Hook has decimated my heart.

All too easily, I can imagine being a Mother of Sandy Hook.  The children there are children of Connecticut… of the nation.  The women who gave their lives that day are heroes, every single one of them.  They gave their lives for every child that attended their school, giving them precious moments to try to get away.  Those women could easily have been my own daughters’ teachers, who show my children care and love and compassion every single day.

And so as I sit here this evening, writing this entry after a very somber work day, I watch my children watching TV with their dad.  I watch one of my daughters putting together a new game she received as a Christmas gift over the weekend.  They should all be doing homework.  I should be on top of them, nagging their butts to get going and finish so that they have the entire night after supper to relax.  To be honest, I won’t feel guilty if they don’t finish it tonight.  I’ll feel guilty if I force it by going into bitch mode.   At the Christmas party over the weekend, I didn’t make sure that they ate a good supper before filling up on cupcakes, chocolate, cookies, and chips.  For breakfast yesterday I let them have reindeer ornament “pops” that we made (look it up on Youtube or Pinterest; marshmallows, chocolate, pretzels).

Don’t worry.  The sugary part of my current parenting won’t last the week.   Okay, fine, and neither will the “not forcing the homework” part.  I’ll make sure that I half-heartedly encourage them to do it tonight.  And tomorrow.  But I won’t enjoy it.  For now, I’m going to parent irresponsibly.

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Like thousands and thousands of other parents today, I did something this morning that couldn’t be done… had to be done.  Something that I’m feeling immense guilt over.  Something that’s giving me throat-choking, gut-wrenching anxiety:

I dropped my eldest daughter off at school and allowed my two younger daughters to get on their buses.

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Empathy

Empathy (Photo credit: TonZ)

One thing we’ve had some issues with regarding Autism is the issue of empathy.  In this instance, I’m not talking about other people trying to empathize with my daughter, but my daughter empathizing with others.  It’s not only been difficult for her to understand the phrase, “Put yourself in someone else’s shoes” since it’s a saying and she just doesn’t like sayings… but it’s actually difficult for her put herself in someone else’s shoes.  She fully expects for you to try to understand her and even read her mind sometimes, but the expectation doesn’t go both ways.

It’s part of the reason that she has trouble predicting how current behavior will affect future events in books and in real life.

Yesterday morning had a slow start, but she did really well once she got involved in the routine, as has been more typical lately.  During our wait for her bus, she discovered that her older sister broke a doll belonging to her younger sister and that distressed her a lot.  She’s very upset at the thought of Anneliese being upset over this particular broken doll.  It made me choke up to see her being so compassionate and empathetic, especially predicting how her sister would react and feel at finding out disappointing/upsetting news.  It made me think that the work her teachers have been doing with her on storytelling is really sinking in.  The way we’ve been working with her at home and trying to have to her think situations through and think ahead… teaching her empathy… we’re not always sure that it’s clicking.  Yesterday was some significant proof that it is.  She’s thinking ahead to how things will affect people and that’s very, very new.  I’m very proud of her.  It’s more than in just simplistic, basic ways too.  She was explaining to me in detail why it would be upsetting to her sister and therefore to her! It was clearly difficult for her to explain to me, since when she gets upset she tends to verbally shut down.  It was therefore a huge step in two areas.

She was so emphatic about it that she was crying.  She brought me to tears over how emotional she was for her sister’s sake.  Man, I love this girl.

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