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.]


I would love it if as a mom and ally, I didn’t have to defend Autism. Little babies and children don’t need to be protected from Autism at all costs.  I would love it if society didn’t treat Autism in that way.  I hope that my Sweet Girl never has to defend Autism. She should never have to defend her very existence. I’ve been thinking about a conversation I had with her a couple of weeks ago that I drafted, and am finally sharing.

My Sweet Girl recently found out that there are people who think Autism is Very Bad and want to cure it, prevent it, stop it, and that they spread misinformation about it. When she heard a doctor and someone else who was supposed to be some expert talk about the MMR vaccine and Measles, the pros and cons, the arguing and veiled insults, she shot her head up as soon as the woman (not the doctor) brought Autism into it. She said something negative about preventing ASD, curing ASD, blaming the MMR and epidemic rates, and the usual propaganda prattle. The Doctor thankfully had his head on straight and refuted the claims this loon was making.

The look of confusion on Sweet Girl’s face would have been amusing under any other circumstance, but I knew by the quickening of her breath that she had some understanding of what that woman said, and it wasn’t something I was ready for because I worried that it wasn’t something she was ready for.

And so I was cursing the Today Show for ramming the measles/vaccine/autism discussion during school-preparation time.

“Why did they say that? What did they just say?”

“There are some people who think Autism is caused by traumas, errr, injuries to the brain. There are some people who think that vaccines cause an injury that makes Autism, and that vaccines can cause other injuries so they don’t trust vaccines. People are getting the Measles right now because a lot of people stopped giving their children shots. They think Measles is safer than the shots.”

“That is stupid, shots are medicine. You need medicine. Shots stop sick before you get sick.” ::dirty look:: “I don’t like needles.”

“I don’t like getting shots either.”

“I do not want to take away my Autism,” she said, pronounced like AWT-izm.

And then the hard part.

“Why do people want to stop my Autism? Then I would not be here,” and there was an edge of hurt in her voice mingled with disbelief.

“I don’t know the answer to that, honey, except that maybe those people just don’t understand Autism or how to look for the talents instead of the stuff in Autism that makes things hard for you and other people like you.”

“Yes, it is hard. I need my Autism. I love being… what is the word? I love being Autism?”

Tears started to well up.

“The word is ‘autistic’ sweetie. Do you love being Autistic?”

“Mmmm hmm.”

“Are you happy?”

“Mmmm HMMMM!”

“That makes me happy. I love you and your Autism.”

 

With a nod she walked away. As you can see, my daughter is kind of amazing. Just like her sisters. In her own words, at only 12 years old she let me know in no uncertain terms that she doesn’t want a cure. She thinks the idea of being injured is stupid (we’re working on reducing the ableist language like stupid and idiot, sorry it slipped in). She’s shocked at the idea that anyone would want to change who she is or prevent more people like her from being born.

She’s delighted when she finds out that other classmates or other peers are like her. There’s a sudden new understanding and behavior shift with them when she finds out, and they’re just happy to “be.” She has a compassion for difficult behaviors when she knows that they might have autism or something similar.

As I said, she’s kind of amazing.

We’ve been honest and open with her about Autism from the beginning when we realized it helped her to know. It helped her form questions when she had them. Since she’s known for so long, since she was 4 1/2 or so, she’s never “not known” that she’s Autistic. I trust her instincts.

She knows that there’s a reason she thinks differently, works things through differently, does things at a different pace, has different talents, approaches things differently, has certain obstacles and challenges that are really difficult and upsetting, but because we accept every single part of her she accepts every single part too. Behaviors that she actively dislikes, or knows that need to change because they could be dangerous because we’ve talked it out, she works hard on. She asks questions and she watches. She tries. She does a lot of watching and experimenting. She doesn’t fear herself, and I don’t fear her. If something seems impossible, we see if there’s an accommodation to make it easier. We adjust. We accept.

I don’t feel sad for her. I don’t want anyone to feel sad for her. I don’t want anyone to think that she’s miserable or suffering. She’s not “suffering with Autism.” She’s autistic, and she’s not suffering. She’s growing into a young woman. Would anyone say she’s with femaleness? And suffering with femaleness? Or she’s suffering with blondness? She’s not. The autism is as much a part of her as her talents to make crafts, draw, paint, write stories, sing, connect with babies and toddlers and animals.

I know she’s going to have opportunities and she’s going to find her own way. I’ll encourage her talents and continue to encourage self-advocacy and education about her own disabilities. I’ll protect her and teach her, guide her, answer her questions, and hope that I’m doing this the right way while I try to learn more about her every day. She loves to learn about herself. She looks at me with impatience, though, when I ask questions to try to learn more about what’s inside her thoughts processes.

“You ask too many questions.”

Yes, honey, and it will never stop.


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.


I’ve been sitting on this one for a while, but I think it’s still important to share how teaching self-advocacy skills to our autistic children is one of the most important things we can ever do. Our children need to learn to feel empowered at an early age so that they never, or rarely, have to worry about being taken advantage of due to their disabilities. Teaching them that their voices matter and how to frame their needs to the people who need to hear them begins at school age, and not just when they arbitrarily reach the magic legal age of 18 years old or 21 years old.

We need to presume competence, that they are capable and recognize self-advocacy skills as a need.

At the end of the year PPT last year (school year 2013-2014) I managed to get “the small bus” (as she calls it) because Sweet Girl asked for a ride other than the Big Bus that the other kids ride.  At first she was upset because the small bus isn’t the van, but it’s also not what the other kids use.  Clash.  A main problem with the bigger buses is that they’re not sensory friendly. There’s also no shortage of bullies on these buses, especially for middle school, and the drivers don’t do anything about it.   Additionally, neither of her sisters would be riding with her to help her tolerate the regular bus.

It didn’t take her long to appreciate it the small bus. She hears stories about the regular bus.  She would have rathered I drove her in, but that wasn’t an option.  The real push came with the after-school programs where she got the Golden Chariot… otherwise known as the Carrying School Children White Van.

“It feels great!”

She started campaigning for it for pick-up in the mornings and for everyday drop off.  She simply said that it’s better.  I had thought she was ok on the small bus but that presented sensory problems too.

And then  I told her that her PPT was coming up.  She insisted that she doesn’t need one, they’re horrible, they’re for babies, and she doesn’t want to attend.  Ok, fine, you don’t have to attend, but you still have to contribute.  And I told her that I was overriding her on the not-having-a-PPT thing.  That prompted her to ask with all seriousness,

“What is a PPT?”

She asked it with the sincerity of really wanting to know for the very first time.  I decided right then and there to explain exactly and bluntly what the PPT and IEP is for, and why she has it but other children don’t.

Presume competence.

“You have a PPT to figure out an IEP.  PPT stands for Planning and Placement Team.  So when I say I’m going to your PPT, that means I’m going to your Planning and Placement Team meeting.  We meet at the school in a special room to make plans for the school year so that we can work together as a team to make sure that you get the best education in the way you learn the best. OK?”

“Yes.  PPT is a funny.  What is IEP?”

“It sure is.  IEP is what the PPT tries to make.  IEP stands for Individual Education Plan.  That means that your whole team including your mom, your teachers, your vice principal, and all of the people you see every day that help you learn things… we all put the PPT together so that we can figure out the best way to teach you the things you need to know to help you learn skills to be independent.”

“I am already independent! I am not a baby! I am at a high level!”

“Ok, yes. You are very independent and you are a great self-advocate.  You are learning to read higher level books all the time.  You do a great job.  Do you want to know why?”

“I do not know.” ::grumpy::

“Because at every PPT meeting when we talk about the IEP, we talk about the ways that you learn best.  We want to help you use your talents and your superpowers so that you can learn to overcome your challenges.  Like, you know how math is hard sometimes?”

“I do not like math.”

“I don’t either.  Join the party.  But having an IEP means that your teachers will give you some extra help.  Some of the other kids might find math really easy.  Some of the other kids might find it really hard like you do, but they won’t get the extra help the same way you do.  They’ll get help, but you get to learn at your own pace and in the way you learn math the best. ”

“Hmmm.”

“In other subjects, you might not need any extra help at all because even if you have extra challenges in math, you might have extra talents in art.  Did you know that not everyone can make wonderful art? I hear that you’re really amazing in woodworking class and a lot of the other kids are having trouble.”

“Yes, I like it.”

“During the PPT meeting, I also get to ask for things that will help make your learning easier for you.  That’s why it’s important that you come to the meetings when you think you can do it or you talk about it with me and write something down for me to tell the rest of the team.  Do you want to know why that’s so very important? YOU are part of your team too, especially because YOU have been such a great self-advocate and are becoming so independent. “

Suddenly her eyes lit up.  I could see that she heard every single word I said and she was taking this very seriously.  For the first time ever, we were having this conversation where she wasn’t making angry assumptions about the PPT.

“Do you want to know what else? I know how important it is to you that you get to make decisions for yourself.  I know you don’t want me to make all of your decisions for you because you’re so independent.  I don’t want you to think that I’m making bad decisions and choices for you, and that’s why I want you at the meetings or to talk to me about what will make going to school easier and better for you.  I want you to be able to tell me how you think you can learn more easily.  How you feel and think is important to me and to the team.”

She got excited.  She had an idea.

“I need the van. My IEP needs the van every morning and every day. It is because of sensory. I need it for sensory. It feels better.”

She explained the why, and that gave me an edge in the PPT.

So at that PPT in October, because she asked me to request it (she now understands what PPTs are for :D) I advocated hard for it. I was told how difficult it is to get the van or any of the special service transport. They’ve always told me that. Luckily I have a good relationship with the DOT around here and they even called me to talk to me to see if the request was about my Sweet Girl. They made sure it was approved for the IEP.

And so within two days she had her first pick-up by the Golden Chariot.


There are tricks you learn when you go shopping if you have Fibromyalgia because if you don’t learn them there are physical and mental consequences.

  • Ask your primary care doctor to help you obtain a handicapped parking placard for those times when you really need it (print it off from the DMV web site)
  • Once you have it, USE IT even if when you first walk into a store you “feel fine” because when you walk out, you very well may not be fine at all
  • Don’t be embarrassed or afraid to use your cane; it can be your best friend and it can give people something visible to recognize about this invisible disease but if mornings are best then go in the morning
  • Create a routine that will help you feel your best before you leave; if you’re on a pain management routine then try to time it when your meds will be working at their peak best and you’ve just had a nice hot shower and relaxed with yoga, meditation, or prayer
  • Try to plan it during the time of day when you’ll be at your best functioning level; if you function best in the afternoon then go in the afternoon (ditto if you function best in the morning)
  • Try to shop when the temperatures and weather are most agreeable for you; winter temperatures and weather are difficult for me to navigate as my balance is terrible sometimes and I have Cold Intolerance meaning anything in the 60’s + are preferable
  • When you have no choice to but to run your errands in the weather that there is, really do make sure to dress yourself for the season in the way that you’ll feel best
  • Wear comfortable clothes and shoes, and keep a spare set in the car
  • Keep spare underwear in your go-bag
  • If you have to go shopping alone, you can still use your cane and a cart if you pull the cart with one hand and use the cane with the other
  • By the same token, if you need to use electric carts that you can ride, provided by the store then use them
  • Use a shopping list no matter it is you’re shopping for, and stick to the list
  • Check your gas gauge BEFORE you leave the house
  • Keep a GPS in the car or use the one in your phone; this is just in case an area you live in suddenly seems unfamiliar
  • When shopping for food, go with a time limit so that you “buy what you buy and that’s what you buy”
  • By that token, recognize that when you shop alone you have to be the one to load and unload the car (unless the store has someone able to help you load the groceries)
  • If you can, shop with someone but try to make sure they respect your time limit
  • When you need something on a low shelf (or high shelf) it’s 100% acceptable to ask someone for help with reaching; most people are willing to help
  • When shopping for clothes or shoes or {{{gasp}}} stuff at the mall , look at different stores online first to get an idea of what you want
  • Use the little carts or bags they provide
  • Don’t overload while looking if you have to try things on in the changing rooms; it hurts to carry too much or change in and out of too many things at once
  • Bring a bottle of water and a snack because you’ll be
  • Bringing spare prescription bottles with your medications so that you don’t miss your doses
  • Keep emergency contact numbers in your cell phone or written down in your purse or wallet, and if you have a medical ID bracelet then wear it (honestly, I need to get one soon)
  • Try not to take rude comments personally; the way people judge has nothing to do with you and everything to do with themselves
  • Expect comments regarding diet, medication, exercise, attitude, and assistive device assumptions and opinions based solely on a first glance; smile and nod and say, “Thanks for your concern. Have a great day.”
  • If you see someone you know and get to chatting, try to gracefully get out of the conversation so that it doesn’t take away from your functioning time (because it will) but be sure to swap phone numbers and set a time to call
  • Don’t add another stop to your trip no matter how good you may feel when you’re done with the planned trip because you’re going to need that energy and functionality to get your items into the house and put away
  • Take time to recover and rest before you perform any other tasks including chores; keep in mind what over-doing it does to you and that chores will always be there
  • All will be done in time

 

I do NOT guarantee these tips. Most of them work for me much of the time in helping manage the severity of my pain and chronic fatigue. Sometimes my body simply betrays me in spite of doing everything right before and during the trips, as well as in between trips.  My goal is to minimize the consequences of having to do errands.

When unexpected errand trips happen I try to keep them as short as possible.  I know that the more tired I already am and the more pain I’m start with, the longer that errand will feel and turn out. I end up with more pain and fatigue in the end, and of course that means more recovery time.

You know what’s best for you, and you need to listen to your body. Please listen to your body. Feed it well, rest it well, treat it well.


First… no shit.

With that in mind:

I’m just going to leave these here.

 

Study Finds No Link Between Induced or Augmented Labor and Autism. (Business 2 Community)

No Link Between Pitocin To Help Labor And Later ADHD, Study Says. (Huffington Post)

No Link Found Between Autism and Oxytocin-Induced Labor | Psych Central News.

No Connection Between Induced Labor, Autism: Obgyns – WebMD. <— This was published last year a year or so after the faulty “study” with the weakest of weak links was shared publiclly

Induced or augmented labor does not increase risk of autism spectrum disorder. (News Medical)

Augmented Or Induced Labor Does Not Increase Odds Of Autism. (Science 2.0)

Labor Augmentation Doesn’t Raise Risk of Autism, ADHD. (Neurology Advisor)

Augmented labor during childbirth is not associated with increased odds of autism — ScienceDaily

 

 

 

Since this same study tried to link Pitocin to ADHD:

Study Finds No Link Between Oxytocin and ADHD | Parenting Patch.


I’ve been sitting on this one for a while because it’s been too upsetting.  I had to adjust my language quite a bit and eliminate a lot (I mean a lot) of cussing and non-christian attitudes.  Still, my language in this entry will be strong, and yes, I will be stating my opinions as facts and probably not very gently because I think that this is a clear-cut case of showing what’s right and what’s wrong.  I think that there are instances where it’s necessary to be bold in our opinions, even judgmental.

I have never and will never speak in favor of electric shock therapy (ECT).  I don’t believe it has ever been useful.  I do believe that it’s one of the most harmful things we could do to someone. Until a few years ago when an online friend had it done to try to help with Bi-Polar symptoms, I honestly thought that it was non-existent.  It turns out that people do use it for Bi-Polar Disorder, Schizophrenia, Schizoaffective Disorder, and more.  And unfortunately people use it for Autistic patients as well.

I’m frankly astounded that it still happens today… yes, in America. Yes, right under our noses. And yes, it’s violent and abusive and horrific.  All you need to do is see video proof and read about the experiences of the individuals and their families about what happens, how it feels during and after, and how the “medical professionals” that perpetuate it often don’t allow the parents or caregivers of the abused individuals know exactly what happens.

It needs to come out that it happens, but more importantly the places where it occurs need to be called out, prosecuted, and shut down for the torture. It is torture.  The disabled individuals that report it and their families that report it need to be heard and believed.  Again… an inability to be verbal with voice, with sound, does NOT mean “unable to communicate.”  It means “communicates differently.”  And it doesn’t mean someone is Intellectually Disabled.  Speech, or rather lack of speech is not a signifier of intelligence.  This does not deserve electric shock therapy.

I’ll spell it out further.

An individual that’s disabled might not communicate with sounds that you understand or with sounds at all.  They may communicate using body language, with making pictures, with writing or typing, or find other ways to communicate.  Learn how to communicate their way rather than force them to learn “the normal way.”  YOU have to make as much of an effort to learn about your loved one’s Autism as your autistic loved one has to figure out how to cope with an unforgiving world that hates disabled people.

This does not deserve electric shock therapy.

An individual that’s disabled might not take their coat off when YOU think it’s appropriate but for them, they should be able to take off their coat whenever they damn well please.  The coat may provide sensory input that’s necessary, and a feeling of safety and protection.  Learn about the reasons why your autistic loved one is keeping on that jacket longer than is typically socially acceptable.  There are valid reasons.  They don’t have to be YOUR reasons.

This does not deserve electric shock therapy.

An individual that has a limited, restricted diet who may eat only a certain color of food; a certain texture of food; only three specific food items; does so for specific reasons.  We need to learn why and help them without force, using gentle methods and cooperate.  Yes, but nutrition.  Believe me, I know.

But this does not deserve electric shock therapy.

An individual that’s disabled might not immediately say hello and offer a kiss and hug to the person they’re visiting, but they have the right to Personal Autonomy.  They get to choose HOW to say hello, and may need time to warm up to the changes and transitions that are occurring before being capable of following through with social expectations.  And honestly? Sometimes it just might not happen.  The greeting may not happen but the rest of the visit might be jumped into with both feet.  Hugs and kisses ought NOT be expected with any person, honestly, but a simple hand wave hello or a gentle “hi” should be acceptable.   No means no.

And this does not deserve electric shock therapy.

You might be annoyed or even embarrassed by a stim (rocking, hand flapping, humming) but unless it’s actually putting the disabled individual and/or others in harms way or it’s truly excessively disruptive then you need to allow Personal Autonomy and let them stim.  When I say “excessively disruptive” or at inappropriate times, I mean during a public symphony or during a class test while running up and down isles and spinning in circles repeating (echolalia) phrases the teacher is saying; or there’s danger such as running and running and running and that running might end up in the middle of a busy street.  Stims have a very valid purpose, even several purposes.  Spinning, hopping, repetitive sounds and phrases, repetitive movements all have a purpose.  Making them stop, forcing them to stop, is not that’s helping them cope but it’s agitating unless you can help replace the disruptive stim with an equally soothing and less disruptive stim.  Or you know, find out why they’re stimming and see if there’s a solution.  There is no shame in stimming (perseverating) and while you have a right to be annoyed, you can tolerate it for a while.

Stims most certainly don’t deserve electric shock therapy.

Just because someone may have one or more disabilities does not mean anyone has the right to torture them.  They feel it all.  They know it’s happening.  They can’t always say no but all you need is to have some empathy.

Being disabled doesn’t deserve electric shock therapy.  Even if your disability is sociopathy.

Sensory processing problems that might be only the slightest issues to you and me could and often do seem like the most enormously terrible sensory experiences to autistic individuals.  Their responses are appropriate to unwanted sounds and touch that are actually painful to them, pain they can feel in their entire body and being even if it’s something we may not notice… a feathery touch may feel like a punch in the head… and yet what do these clinics do? The slightest, most quiet sound of a fridge humming might seem like a snow plow thundering down the street shaking the whole house.  A shady spot in the yard might seem like the brightest sun to you or me.  Forget ABA (which I’m mainly against)… imagine what electric shock therapy does to try to “stop” behaviors that result from sensory processing issues.  Just imagine.  Imagine yourself in that position.  You can’t force an individual to stop having sensory processing disorder or their responses to stimuli that is debilitating for them; you can only help them learn to cope and ideally, learn what the problems are and minimize exposure when possible.

Sensory Processing Disorder doesn’t deserve electric shock therapy.  It’s the worst assault on their senses possible.

Cognitive disabilities that contribute to learning delays and other issues in children and adults don’t deserve electric shock therapy.  You can’t ECT someone out of Cognitive disabilities or learning delays.

Just because someone may have one or more disabilities does not mean that they aren’t sentient beings that are able to think for themselves and make their own decisions whether they communicate the same way you do or not.  Imagine what the electric shock therapy does to their brains and thought processes… the REAL damage that’s occurring.  If you believe your loved one’s intelligence is “at stake” regarding diet, pollution in the air and water, vaccines, educational input, religion, what they watch on television, what video games they play… then what do you think electric shock therapy does?

Being disabled doesn’t deserve electric shock therapy.  Being intellectually disabled doesn’t deserve electric shock therapy.

BEING AUTISTIC doesn’t deserve electric shock therapy.

No one deserves electric shock therapy and it’s a major disservice in even thinking about electric shock therapy or endorsing it.  It’s essentially a punishment for being different and not being capable of passing as non-autistic, non-disabled, and having the utter audacity to behave as if they’re disabled rather than overcome the disability and pretend they don’t have one.

When parents and caregivers allow electric shock therapy, they are allowing torture and punishment.

It’s destroying faith and trust that their loved one had in them.  They don’t understand the purpose, and believe they’re being punished.  They believe they’re dying.  It teaches nothing except fear, and damages the brain that wasn’t damaged to begin with.

Something needs to be done.  It needs to be banned.  This is not a slippery slope thing.

I’m going to ask you to click this link below to the blog “diary of a mom.”  Read that entry and then watch the video.  It’s going to be torture to watch it but you must.  You must for the sake of the individuals who endure the REAL torture every single day.  You need to watch it so that the image is burned into your brain and even during the worst of the meltdowns that your child ever experiences and that you have to help him or her through, that you experience with them, when you feel that you might hate Autism itself and wish it didn’t exist, you remember that video and think about how lucky and precious your child really is.

judge rotenberg center | a diary of a mom.

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