Archive for the ‘advocate’ Category


During this past fiscal year of 2016, our illustrious Governor Malloy (D) has brushed off all responsibility of the financial crisis our State is in. Between April and June 2016 he laid off 1,064 State Employees. He plans 2,000 more positions to be eliminated. and more budget cuts. All of this to cover his mismanaged $960 million deficit. That he created.

I’m not talking about froufrou State jobs like calling someone in to give the Governor a toilet seat filled with coins and dollar bills in his private bathroom. I’m not talking about dragging around a coffee and fruit & bagels cart on every floor, or cutting back from six assistants to only three. Not that those jobs aren’t important to the people who hold those jobs. I love coffee. That’s very well established. I love a great barista. And I would kill for a good assistant. But I’m talking about jobs that are providing services to people in dire need.

People that have disabilities are the ones who are suffering the most, with children and families not far behind. Aging population that have disabilities. When I say disabilities, I mean significant disabilities. Families and caretakers of disabled individuals. So, we’re talking about people who need and will need services like this for children, youth, young adults, adults, and aging adults:

 

  • Sign language interpreters were just cut from services provided.
  • Health care workers at UCONN Health Center
  • Social Workers, already short staffed
  • Department of Mental Health and Addiction Services; mental health assistants; caseworkers;
  • Department of Developmental Services
  • Department of Children and Families
  • Education Employees in several important Technical Schools

And just for fun…

  • Department of GOVERNMENT ACCOUNTABILITY
  • Department of Corrections
  • The Judiciary Department
  • Military

 

People like this young woman Jenny are being affected immediately. Dangerously. But Governor Malloy’s response is that while it’s unfair, it’s our state’s economic reality.

 

Connecticut’s largest health care workers union took to the airwaves Thursday to protest ongoing state employee layoffs.

The commercial launched by SEIU, New England 1199 and airing on Connecticut stations and the internet, features a woman, identified as Jenny, who is living with cerebral palsy.

In the 30-second spot, Jenny, who “speaks” using a computer that reads her eye signals, makes a direct appeal to Gov. Dannel P. Malloy to restore her state-appointed speech pathologist, identified only as “Mallory.”

“My name is Jenny,” she says to open the ad. “I was born with cerebral palsy. This computer is the only way I can communicate. Mallory is the only worker employed by the state of Connecticut who knew how to customize this computer so my voice can be heard. On May 3, Mallory was laid off. Governor, please bring back Mallory and all of the laid-off state workers. We need them.”

Malloy and the legislature built big savings in salary accounts across most state agencies into the $19.76 billion budget adopted last May for the fiscal year that began July 1. Officials cut spending more than $800 million below the level needed to maintain current services to craft a plan that does not increase taxes.

More than 250 of the speech pathologists and communications therapists New England 1199 represents at the Department of Developmental Services have received layoff notices.

(Cont.)

Source: Union ad features disabled woman’s appeal to reverse state layoffs | The CT Mirror

Read Full Post »


I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

Read Full Post »


Yesterday, ASAN’s Ari Ne’eman announced he was stepping down at the end of the year. That was important. Here’s the announcement.

Organizations go through many stages. One of the most challenging and important are transitions in leadership, particularly when they involve founding members. Over the last ten years, I have had the honor and privilege of building and directing the Autistic Self Advocacy Network. That experience has been one of the single most important and impactful …

Source: A Message from ASAN President Ari Ne’eman | Autistic Self Advocacy Network

Then, prompted by the announcement, an entry was posted on ASParenting Blog by Melody. I credit and thank my friend Nora for making me and others aware of this disappointing report. Nora writes the blog A Heart Made Fullmetal.

I’m sharing Melody’s post about ASAN because as a mother blessed with an autistic daughter, I’ve looked to ASAN (Autistic Self Advocacy Network) as a guiding hand. I’ve shared them as a valuable resource to other parents and to autistic individuals that come into my workplace.

While I realize that the majority of experiences of employees are likely possibly maybe positive, if any of what is reported in this blog is true and a pattern, and indeed is policy then I don’t believe I could support that sort of agency.

In fact, I know I can’t. I wouldn’t encourage my daughter or friends or consumers in my agency to take advantage of them with what I now know, and therefore I wouldn’t encourage you. You are just as important as someone face to face with me when it comes to accurate, compassionate, gentle representation by people who are being treated well in their employment.

If it were ever guaranteed and proven that changes were made, that Autistic people were being treated with dignity and respect, being paid fair and competitive wages, being give reasonable accommodations, I might change my assessment. Trust is cornerstone. I know that. Accountability is, as well, and so far, ASAN has not taken accountability or responsibility.

I should warn you that there could be triggers in this blog article below as it mentions abuse tactics towards Autistic people, but it’s important to read. It’s a tough read.

With Ari Ne’eman’s announcement that he will be stepping down at the end of the year today, I knew I was out of time to find a large source to post what you are about to read. Please sh…

Source: ASANs Past Abuse and Moving Forward – ASParenting

Read Full Post »


I forget where I got it, other than Google

Candlelight Vigil

In the aftermath of the Orlando massacre, a three hour nightmare, I’ve realized that the moment it occurred and was made public was a moment that changed America forever.

I hope that none of us loses sight of what’s really important in this tragedy. These people matter. The 49 who were massacred. They’re important.

Edward Sotomayor Jr., 34 | Stanley Almodovar III, 23 | Luis Omar Ocasio-Capo, 20 | Juan Ramon Guerrero, 22 | Eric Ivan Ortiz-Rivera, 36 | Peter O. Gonzalez-Cruz, 22 | Luis S. Vielma, 22 |Kimberly Morris, 37 |Eddie Jamoldroy Justice, 30 | Darryl Roman Burt II, 29 | Deonka Deidra Drayton, 32 |Alejandro Barrios Martinez, 21 | Anthony Luis Laureano Disla, 25 | Jean Carlos Mendez Perez, 35 | Franky Jimmy Dejesus Velazquez, 50 | Martin Benitez Torres, 33 | Luis Daniel Wilson-Leon, 37 | Mercedez Marisol Flores, 26 | Amanda Alvear, 25 | Xavier Emmanuel Serrano Rosado, 35 | Gilberto Ramon Silva Menendez, 25 | Simon Adrian Carrillo Fernandez, 31 | Oscar A Aracena-Montero, 26 | Enrique L. Rios, Jr., 25 | Miguel Angel Honorato, 30 | Javier Jorge-Reyes, 40 | Joel Rayon Paniagua, 32 | Jason Benjamin Josaphat, 19 | Cory James Connell, 21 | Juan P. Rivera Velazquez, 37 | Luis Daniel Conde, 39 | Shane Evan Tomlinson, 33 | Juan Chavez Martinez, 25 | Jerald Arthur Wright, 31 | Leroy Valentin Fernandez, 25 |Tevin Eugene Crosby, 25 | Jonathan Antonio Camuy Vega, 24 | Jean Carlos Nieves Rodriguez, 27 | Rodolfo Ayala-Ayala, 33 | Brenda Lee Marquez McCool, 49 | Yilmary Rodriguez Solivan, 24 | Christopher Andrew Leinonen, 32 | Angel L. Candelario-Padro, 28 | Frank Hernandez Escalante, 27 | Paul Terrell Henry, 41 |Antonio Davon Brown, 29 | Christopher Joseph Sanfeliz, 24 | Akyra Monet Murray, 18 | Geraldo A. Ortiz-Jimenez, 25

The 53+ people who were injured, maimed, and hurt matter and are important. Their families and friends are important. The first responders, the police, and the nurses and doctors at the hospital who interacted with them, tried to save them, watched them die, are important. The people outside the club who watched it happen are important. The 9-1-1 operators who answered those calls are important. The off duty officer who was outside and realized something was happening and was the first to engage is important.

As a Christian, as a Catholic, I believe that above all else, we need to remind each other to make it a priority to choose love, compassion, empathy, generosity, loyalty, humanity, kindness, open mindedness, duty to our family and communities. This is my call to Faith. This is my call to Action. The only way we can make sense of things: remembering those who have died. Praying. Giving blood. Giving hugs. Communicating with Equality Florida (click here). Letting our LGBTQI+ family and friends and coworkers know that we support them, love them, need them… ESPECIALLY when we’re Christian… ESPECIALLY when we’re Catholic.

We all have such a capacity for love that most of us are still learning to tap into the potential of it. Well, it’s time to put down the chisel and grab the wrecking ball. We need to break open the dam and forget about the flood gates; we need to forget about holding it all in.

We’re a nation that is filled with diversity, and therefore intersectionality. We all experience the same emotions and have the same needs.

Everyone has an opinion, and they’re clamoring for their voices to be heard about what they believe is the most important thing. I have some opinions. I’m not so sure they’re lining up with what other people are talking about. I don’t really care. It’s my blog. I can talk about what I believe is important, especially based on what I’m experiencing in my home with my children.

I’m trying to imagine how hard it must be for the people who were actually involved. But I imagine the people I love who are in the LGBTQI+ community. I imagine my daughter’s friends that in that community, and how she feels when they tell her about their fears and grief. I imagine them going on vacation to Orlando, and being in the wrong place at the wrong time. I imagine it happening here, in a place that’s supposed to be a safe zone for them when “out there, somewhere outside” isn’t so safe. Fear and grief clutch at my heart, and again, I try to imagine that feeling in someone with more ties to the community.  Those are the people who deserve the empathy and connection and consideration. Those are the people who need protection, love, generosity, caring, and a sense of safety equal to that of what anyone else feels.

I have a difficult time with the people who choose to identify with the murderers, to the point that they become apologists and empathize with them. In this instance, there are vile people out there cheering him on believing he should have been hailed as a hero.

I don’t want to empathize with the shooters or those assholes who do.

Most people in the world agree to live by the codes, laws, mores, and social systems established in the societies they live in. Most people who don’t enjoy the society and have the will to change it go about changing the system legally and without violence. Most people live in a world where they care about their community as well as their core family.

We need to accept that we belong to more than our simple family units; we belong to our towns and cities, our states, our nation and yes, we belong to the Global Community. We all need each other. We have more similarities than we do differences. No single one of us deserves more than another, or is worth more than another. We form closer bonds with our parents, spouses, children, siblings, and friends, and that makes them important… but our value as human beings is all the same. Our needs are all the same. We’re all equal in God’s eyes, and so we should all be equal in each other’s eyes. We must be. God loves us all. Maybe he loves all of us enough for himself, but I believe that we were all put here to love and be loved. To respect and be respected. To learn. To build relationships. To see God in each other. To see ourselves reflected in others. To appreciate where we are, and the wonders of the Earth and the Universe and each other. To learn as much as we can before we look forward to the big pearly gates. Doing all of this while still honoring a relationship with Jesus, with God, while accepting everyone BECAUSE OF their differences can only fill our lives with more love.

I’m certainly not perfect. I have a hard time with this. I try my best to at least “not hate.” I may not love murderers or Donald Trump but as my daughters point out, “It’s not Christian to hate them. Jesus would say don’t hate anyone.”

So trust me, it’ll be hard for me to follow certain aspects of my own Call to Faith and Call to Action, but I beg you to try with me. Please. Let’s pay it forward with a kind act each day. It shouldn’t be a token act, but it doesn’t have to be a grande gesture all the time either. It SHOULD come from the heart and be genuine.

I’ve written far more than I intended to write. I had hoped to be much more succinct. My brain is just so full up. So sad. I don’t know what to do with it all.

Read Full Post »


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.

Read Full Post »


Last week, I attended Sweet Girl’s PPT for the extended school year’s and next school year’s IEP. Thankfully, they threw heaps of services at her again. I won’t go into detail this time, because that’s not what this entry is for.

This meeting, she didn’t want to attend. Would. Not. Do. It. She wouldn’t speak with me about it ahead of time, nor acknowledge me when I approached her about it. Normally we script it out and make lists, and we write down her concerns, issues, and wish list. The team takes it seriously. She flat refused this time. I reminded her that if decisions are made for her without her, or that she dislikes then it’ll be harder for her to understand. It would also mean she gets less say in the decisions. Nope. She wouldn’t come down from the classroom.

Afterwards I told her about it and how well it went. She nodded and “mmm hmm’d” and shook her head no when I asked periodically if she had questions. At the end I asked her if she had any thoughts she wanted to share.

 

“Did you… mmm… did you advocate me for no homework clubs after school next year? Because I am old enough. You make my day too long.”

 

I told her that while I knew she wanted to end that program, I advocated for her to keep it and that her team agreed. I won’t share her exact initial reaction except to say that she was very angry.

Then she demanded to know why, which doesn’t usually happen until hours later. First, I validated all of her feelings on this subject as usual. I often commiserate, as I don’t like working late if I feel I don’t need to do so. I don’t typically explain why she has to participate in the homework programs after school until a separate conversation. This time, I validated her feelings and commiserated, but then in the same conversation I logicked her. The reasons I give are always the same, and they’re reasons that I know she understands logically. I’m 95% certain that she agrees with them because she doesn’t tell me they’re not true. I’m also 95% certain that she really just doesn’t believe they’re as important as I do.

The fact is that if she doesn’t do her homework or work she couldn’t finish in class during her after school programs during Summit or Homework Club (one with peers, one with teachers) then the work wouldn’t get done at home. She also has her peers there to help her or to make the work more fun, just like group work. She really loves group projects and takes them seriously. She gets really involved from what her teachers say. There’s more structure there as well, and let’s face it… if she has to do the homework and unfinished classwork while still at school she can’t take an unlimited break or wander off while getting a snack. She can’t sneak away to her room. She can’t become a boneless child and forget how to use a pencil. She can’t go to a gaming site for Pokemon and tell me it’s really her Chrome Classroom. When pushed, school is school, home is home, as she likes to say, and never the two shall meet.

The problem has been that I’ve done more emotion-validating than I should have, I think. No… no that’s not quite right; I’ve commiserated more than I should have since she started balking at the homework programs. After all, if I can commiserate with her about it then how could I possibly make a decision she didn’t agree with? It’s like making a decision against myself. At the same time, I was trying to argue logic with emotions. It doesn’t stop me from asking if she at least understands what I’m saying even if she doesn’t agree, or if there was anything else she needed to say.

If I parented only by emotion, however, I’d be a crappy parent. I don’t even make my own life decisions based solely on emotion. I think things through often to the point of overthinking. If I parented based solely on what my children feel they want and decided they need, I’d be a crappy parent. When I agree with them and make decisions they agree with, I’m a wonderful mother. Disagree? I’m the worst mother in the world. That’s usually the worst insult Sweet Girl throws at me: You are the Bad Parent of the World. Essentially, I was expecting her to tell me that I was Momsplaining. Maybe she’d have been correct.

This time was different.

 

You. Are not a good advocate.”

 

And then Sweet Girl walked away.

Read Full Post »


There’s such a great not-knowing because there’s the privilege of not *needing* to know until one *must* know in the so-called abled world. I hate that word, abled, as if having disabilities means someone isn’t abled or, in the common vernacular, capable of performing tasks of worth for the self, family, or society. There’s also an unawareness about intersectionality regarding multiple disabilities, as if it’s not possible to have more than one disability. But wait, there’s more… intersectionality with disability also includes gender, culture, ethnicity, abuse history, poverty, and other marginalized groups overlapping with each other.

It’s a privilege, but it’s also insensitive and inconsiderate. I’ve written about disablism before, ie. the attitude people have against disabled people and the discrimination. The article I’m sharing talks about how so much of it isn’t blatant and in your face cruel, and may seem like it’s not a big deal to those who don’t have (or don’t accept they have) disabilities. Very often, the person that’s engaging in disablism (ableist behavior) may even think that they’re showing compassion and being kind and not realizing that they’re being condescending, rude, or even harmful to the individual and disabled community.

I can give an example or two.

I drop my cane often, sometimes in public. Yes, I keep it with me always even if I don’t need it at that second because at some point in the near future I’ll likely need it. I can’t really leave behind what’s usually my third leg.😉 Anyway, I drop that thing frequently and there are times when I do it in public, strangers will pick it up for me.

That seems so kind and considerate, right? In that immediate moment their instinct was to pick up the cane so I wouldn’t topple over into the egg display. The problem is that they didn’t ask first. It’s a little presumptive that I can’t pick it myself, even if I may actually be in so much pain I can’t pick it up myself. Most people who haven’t been around others who use canes (or haven’t used canes themselves) don’t know where to touch the cane when picking it up, and instead pick it up by the handle… and I don’t know if they wash their hands after using the bathroom or sneezing or coughing. I simply need someone to ask,

“Hi, do you need help reaching that?”

 

People do that so-sorry head tilt with a pout and sorrowful expression when they hear that one of my daughters is autistic.

“Oh my god, how do you live with pain like that? I couldn’t live that way. Plus three girls? And one with Autism? I really don’t know how you can handle all of that. I couldn’t do it. But I ADMIRE YOU. You’re SUCH AN INSPIRATION.”

Not enough of an inspiration that you’d imagine yourself living with a disability or living with a child that’s disabled, apparently.

People send me tons and tons and tons and tons of advice from anti-modern medicine and anti-doctors and anti-education and anti-science propaganda web sites that they think will “cure” my pain and depression as well as my daughter’s Autism, and my other daughter’s ADHD. If I take the time to respond and actually refute the trash with proof and science, the response is usually,

“Yeah, but what if? So and so said that they used it and after six months they felt better, and their cousin’s friend was actually cured!”

Mmm hmm. What if. What if the snake oil salesmen are right, and all of those hundreds and all of those thousands of dollars of tainted “essential” oils I’m supposed to use for the rest of my life are a great “cure.” Along with the food supplemental companies that are so much better than actually eating real food, that really want you to join and sell their food-like products that are packed fully of allergens. Not to mention the insistence on avoiding real medicine for special filtered waters you can only buy from wherever. All of this instead of eating real good whole foods and exercise that’s tolerable with good medical care. Everyone else has the cures. Everyone else knows The Cause and who to blame.

My favorite is,

“Exercise helps. That Lyrica commercial says a body in motion stays in motion. How active are you, like REALLY? You ought to join a gym and try Lyrica.”

 

Yeah-no. All my nope. That commercial is irresponsible, and I could throw a tantrum about it right now, but that’s not the point of this particular post. It’s the disablism in the meaning well, the knowing better, the feeling so sorry, forgetting to ask permission, and so much more.

And here, now, is the post that inspired me from The Caffeinated Autistic. Much more eloquent than I managed to be.

Blogging Against Disablism: Sometimes it’s subtle…. – The Caffeinated Autistic

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 838 other followers

%d bloggers like this: