Archive for the ‘Classic Autism’ Category


I’m going to start right out of the gate admitting that I realize there are probably hundreds of blogs addressing displeasure, calamities, and reasons for and against DST.

I’m not those blogs. 🙂

I know it’s a struggle for households that don’t have children, and households that don’t have children or adults with any sort of disabilities or neuro-diversities.

We’re not those households. 🙂

I could talk about the fact that during the week after Daylight Savings Time kicks back in and we’re forced to move our clocks ahead an hour on that predetermined agreed upon day, are the most car accidents and fatalities. People are late to work that entire week. It takes a week or two for most people to get their sleep cycles adjusted because it may seem like a simple one hour change, but we’re actually shifting our entire day to accommodate this change. We’re losing more than an hour of sleep.

I could do more than mention them and go into lots of detail, but I won’t. I’m too tired.

In a household where there’s someone with physical disabilities (me) and someone with neurological diversity (two teens) there’s far more involved. As small children and through elementary school we would try to prepare by adjusting bedtimes two weeks prior to DST. We’d try to adjust meals as well. Slowly, but surely we’d try to adjust the routine and schedule.

It didn’t matter. We end up dealing with a minimum of two weeks of tragic drama, and with Sweet Girl it’s gone as long as six weeks. With Dear Girl she usually adjusts within the two weeks, but it’s a tough two weeks. Youngest, Darling Girl goes with the punches.

This year, it’s only been five days in and I’m wrecked. My five hour work day should feel like it’s over earlier in the day, but it feels longer, and so I hit my wall earlier than usual. I’m up earlier than usual this week, that’s what my body is saying. I get home and if I don’t prepare supper early to heat up later, I know I won’t be able to from the pain or chronic fatigue. Already this week I’ve had days where I had to go straight upstairs to have a good lay-down.

Sweet Girl’s already-difficult time due to needing a break from school (our town skipped February vacation and they have to wait for April this year) has just been exacerbated. Mornings are already difficult, so ultra-creative motivations and soothings are in order. I just feel terrible because some days I have to simply get Completely Parental and use my I’m Serious Because I’m Your Mom Voice. 😦  Prior to coffee sometimes. Sometimes I’m so tired and grumpy right along with her that I actually forget to make my coffee.

Dear Girl informed me on Monday or Tuesday that I need to get to The Guy Responsible For DST prior to having my early-morning coffee while still in my prior-to-early-morning-coffee-mood and Have A Talk with him. I wouldn’t be making any friends. But he WOULD stop fucking around with time changes.

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April 1st: Rainbow of RosesMy Sweet Girl loves blue. Of course, she also likes green, pink, and purple, but she says she loves blue the best.

Last year she started to notice that her elementary school was taking part in encouraging the students ahead of time to wear blue and “light it up blue” for April 2nd in order to show solidarity and celebrate Autism. They teach the children about Autism and why it’s important to be accepting of differences, and how autistic children and teens and adults might think differently but are still just the same as everyone else. They show the children the positives, but also teach the children that there can be difficulties, challenges, obstacles, that might be hard for them to understand if they aren’t autistic themselves, and it’s very important to know that they don’t have to be afraid. They shouldn’t bully children that show autistic behaviors, but should be friends with them and protect them. They don’t have to accept being bullied themselves by anyone, and if they see a child that they think might have disabilities such as happens with Autism, they should speak up.

Now, this isn’t what my Sweet Girl told me. She came home and told me that the whole school dresses up on April 2nd in her favorite color, blue, especially and specifically to celebrate her.  As a 6th grader she plans to wear blue tomorrow to celebrate herself.

I learned that this is what the elementary students are being taught by a neighbor’s daughter this morning because she was so excited to tell me about having learned about Autism in school to prepare for tomorrow. She’s excited to learn more, and she’s even more excited that she can share positive experiences with classmates because she’s at our house nearly every day. I remember how sad she was when she heard that there are people who would want to cure Autism and prevent people from being born with it. She immediately said, “But then there wouldn’t be awesome people like G!”

This morning my neighbor girl also told me how much she enjoys Sweet Girl and there are lots of things she loves that Sweet Girl does. Her very favorite thing is when I hold up my hand to give a high five, and Sweet Girl goes to give me a fist bump instead… but when I hold up my hand to give her a fist bump she puts up her own hand to give me a high five. She loves Sweet Girl’s sense of humor; she loves seeing how Sweet Girl can start her morning routine with the worst of moods and then change it around by helping me bake muffins or smelling coffee and giggling that giggle that Sweet Girl does.

Those are the things she wants to share. We’ve turned our little 9 year old neighbor into an advocate and ally already. 😉  She plans to wear blue head to toe in honor of Sweet Girl.

This does present a dilemma in my own mind because these girls really don’t connect lighting themselves up blue with the damage done by Autism $peaks. How do I tell these children that they shouldn’t because it’s offensive to those of us who know what it’s connected to? That if they come across an autistic individual who would be offended knowing the significance as a self-advocate, it could cause a trigger effect for that person that could last hours or days? How do I justify taking away their excitement to learn more positive things and their desire to educate and not just make people aware but ACCEPTING?

These kids get it, you know… that it’s about accepting now and not just awareness. After all I think that there are probably only 12 people left in the developed world that have never heard of Autism. As a nation, we’re definitely aware. The problem is that as a nation, we’re not educated and we’re definitely not accepting. We can’t even accept disabilities as a whole let alone Autism. We have a self-proclaimed Autism support agency, Autism $peaks, who takes donations and doesn’t put them towards services but towards research that would try to find cures and prevention. We have parents who try to murder their disabled children, and apologists for them who “understand what they’re going through” hoping courts will be lenient and demanding others not judge them. We have comedians making vicious fun of disabled people. We have musicians writing offensive song lyrics against autistic people. We have every day people using the word autistic as a slur and an insult just as they use stupid, moron, idiot, and dumb (all ableist language).

These kids are getting it. This is why I support mainstream education rather than separating the students that have disabilities from the non-disabled students. It’s not just about educating them and telling them in a Do As I Say, Not As I Do situation. It’s about seeing each other as equals because heads up, they are, and treating them as such because guess what, they are. It’s about learning that being different doesn’t mean less, and it doesn’t mean segregation. It shows all of the children, including the children with disabilities, that we ALL have challenges and obstacles and we all need different kinds of help.

It teaches more than tolerance, more than awareness… it teaches acceptance. A quiet, natural acceptance.

A major issue with what April as Autism Awareness Month means is that for the teen and adult self-advocates that are aware and educated about the intricacies of the history of how society treats disabled individuals; that have been through traumatic experiences as they’ve grown up for various reasons at the hands of their parents, peers, education, therapies; how society specifically currently views Autism as a whole; and last but not least the intense spotlight that this “awareness month” puts on Autistic individuals is this:

It’s not the right kind of attention for many Autistics.  It’s anxiety inducing.

Donations often go to agencies that are not supportive of Autism at all, nor of Autism Services (Autism $peaks I’m looking at you).

It’s a huge burden to bear to be the face of Autism for an entire month.

It’s a huge burden to bear to be expected to educate people for an entire month.

It’s a huge burden to bear to have to argue with parents who have not accepted their child’s neuro-diversity even if their child is in their  40’s or 50’s.

It’s a huge burden to bear to be expected to “overcome” their disabilities or show them off for others.

It’s an even worse burden to have to defend being Autistic in a world that still wants to cure you and insists that it needs to prevent Autism in others. Autistics around the world feel that if their parents wished they weren’t Autistic, that if they could stamp it out, then they’re also wishing they were stamped out. There is no distinction between their person-hood and their autism.

It’s not fair when parents use this month to spotlight how much they hate Autism, causing Autistics around the world to feel that they are hated. If you hate Autism, they feel you must hate them as well. That’s a reasonable feeling. There is no distinction between their person-hood and their autism.

I can’t say that I disagree.

That’s an awful lot to bear. That’s why at only 12 years old, I’m really not sure that I want to take the joy out of my daughter’s eyes when she sees her classmates wearing blue because her interpretation is that it’s all in her personal honor. It’s Sweet Girl Day tomorrow. I know she’ll ask me to wear blue for her, just as she did last year. I sigh as I write this because I know the social implications, but for my daughter? I’ll do anything. Maybe I’ll wear a multi-colored something.

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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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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.

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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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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.

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As a non-autistic mom to an autistic daughter, addressing the whole MMR Debate is probably the right thing to do right around now.  This is not a scientific, going to provide documentation and other specific proof sort of post because I’m not in the mood.  I’ve done it before and if you’re interested, there’s a link at the bottom to some of the things I’ll be referencing.  Plus I have a search tool on my blog.  And it’s my blog so I can include and exclude what I want.  I don’t get paid for this blog.  Ha.

The reason I’m addressing this now is because, of course, Measles is in the news nearly every day lately due to what started out as an outbreak that began in Disneyland.  To keep it simple: unvaccinated individuals that actively had or were incubating Measles went to the amusement park and passed it along to other individuals, some of whom were vaccinated with MMR and the majority who weren’t.  Of course the whole thing branches out from there and it’s getting bigger by the week.

Before I offer any opinion on this, which you can probably guess if you’re a regular reader, I need to get this out there:

Autism is not damage.  

It’s not damage caused by vaccines nor birth accidents nor “bad genetics.”  

It’s a difference in biology that creates a difference in neurology due to genetics.  

As a child grows, the autistic traits become more noticeable.  As a child grows, there may be things in the environment that trigger the traits that non-autistic people consider to be negative to occur more prominently and that’s why they’re called Environmental Factors.  

Most people don’t seem to know what that means.  They think Environmental Factors means “pollution, water quality, and food quality.” That’s only a partial truth.

From the WHO (World Health Organization):

Environmental health comprises those aspects of human health, including quality of life, that are determined by physical, chemical, biological, social and psychosocial factors in the environment.

I was going to say something really insulting and cutting about being anti-vax when someone is perfectly healthy but doesn’t care or understand a wit about social responsibility, but I’ll refrain.  

I was going to say something that had the word “rage” in it but I realized I don’t feel rage.  I feel pity.  

Ok, maybe a little rage.  I feel rage because people who don’t have the intelligence to at least state that they’re anti-vax because they “researched ingredients” even if they don’t know what that really means, don’t really know how to interpret what they find nor know which resources are reliable.

I feel rage because there are still people whose default position is “BUT AUTISM!” because THOSE individuals didn’t bother to find out the facts.  

Or maybe these groups? they chose to ignore the facts.  They choose the paranoid path that “they” give us limited information that’s not true. They think pro-vaccination standpoint is uneducated and misled.

There are some from both groups, of course, who willfully ignore actual science that’s been peer reviewed and completed by independent scientists who have no stake in the matter except finding the truth… who lose money for their efforts and aren’t affiliated with pharmaceutical enterprises.

There are those who can’t tell the difference between science and pseudoscience … and those who can but prefer the fringe and discredited pseudoscience.

There are those with “my opinion and my psychic say so” when faced with irrefutable facts and who will twist anything around to mean the opposite of what they actually mean to the point of accusing chemical biologists of making things up and being part of some “team” trying to control the masses by feeding misinformation intentionally.

Yeah.  That happened just today.

OF NOTE: Never, ever read the comments underneath articles.  No matter your viewpoint or opinion, just don’t read the comments.

I wrote this other post 4 1/2 years ago: 

Win For Autism Community: Andrew Wakefield Lost License | Ever So Gently.

It’s even more important now because this individual, this purveyor of deceit (Wakefield) is being held up as a misunderstood man whose honest research is being twisted and lied about. It’s not.

I was so full of hope in the ability of our society to bounce back from something that was damaging to the Autism Community worldwide and now it’s even more evident that it’s damaging to ALL individuals in the world who may ever become ill from vaccine-preventable communicable diseases… that are healthy and able to be vaccinated.

My faith in people in general and yes, particular individuals, isn’t nearly so high any longer.

I think it’s important that people keep the details fresh regarding what Andrew Wakefield did: he knowingly, intentionally, and willingly perpetuated a hoax regarding the MMR vaccine by falsifying a study and a paper that would earn him fame and legitimacy in the scientific community.

Let me phrase that another way.

The MMR-Autism paper written by Wakefield was without question proven dozens of times over to be fraudulent.  He committed a worldwide FRAUD and hoax by intention.  On purpose.  For fame and notoriety.  For the money that some people think doctors and pharmaceutical companies and scientists are “in it all” for. The people who use words like Big Pharma and think eating and living without doctors or medicine or “chemicals” will prevent any illness and block all communicable diseases.

Know this: Wakefield is reviled in the scientific community because he tried to pass himself off as a legitimate scientist.  This wasn’t some misunderstood poor doctor trying to help the world see that the MMR is harmful to neurology or gastroenterology for the majority of the population or even a significant segment.  

He wasn’t viewed as legitimate prior to the Lancet posting that harmful, damaging, ridiculous paper and wasn’t … ISN’T viewed as legitimate by the science community afterward.  The editor at the Lancet at that time didn’t catch that they had previously refused his other paper/s on other subjects that were ALSO FALSIFIED because they were in dire financial straits and needed to publish something.  It was simply bad timing that Wakefield (I can still barely type his name without wanting to disinfect my fingers and keyboard) submitted that horrifyingly damaging paper. Within the past 2 years the Lancet retracted that paper and apologized.

All that said:

There needs to be a dialogue about Vaccine Safety.  If there’s anything this entire debacle has shown the United States this is true.  

I’ve always been of the state of mind that we need to know what medicines we’re giving our children, why we’re giving them, how they’ll affect our children, how necessary they are, and the efficacy.  

I’ve always believed that even if parents make ridiculous choices we ARE entitled to choose how we parent.  

We need to get more people to figure out that short term side effects are not vaccine injuries.  

We need to get people to figure out that correlation of timeframe and other events is not causation.  

That opinion is not fact.

In regards to vaccines, I would not liken them to pulling a trigger on a gun if we do inject our children or if we don’t by risking them to highly communicable diseases unnecessarily.  I detest that comparison when either the pro or anti sides use it. The fact is that vaccine injury and allergies exist but in a miniscule segment of the population. The personal stories people tell make it appear like a lot but personal interpretation leaves a lot of room for misinterpretation and exaggerations in retelling.

However: When we demand that The Government steps in to legislate and compel people to have medical procedures done, to take medicines we would otherwise refuse, we are going down a slippery slope.  We are giving away freedoms that once we give them away will be nearly impossible to get back.  It becomes easier and easier to give more and more freedoms away.

And when we legislate medical procedures and medicine, we’re infringing very closely on causing harm to individuals who literally medically would die if they were forced to undergo what the majority of the population would be safe with.  We would be forcing a need for them to waste precious time and money litigating their way out of medical procedures.  We have enough of that occurring already with disabled individuals that we presume are incompetent because “we know better.”

I think it’s one of the most important conversations that we can have with each other.  

I’ll be honest, though… the instant someone says “Big Pharma” they’ve lost all credibility and all I hear after that is “blah blah blah invalid paranoia blah.”  

As soon as someone automatically and broadly tells me that science, scientists and doctors are all in on some enormous worldwide conspiracy with The Government/s to make us all sick and give us cancer in order to make money and control us, they’ve lost all credibility.  

As soon as someone tells me that I simply haven’t done the “right” research, and that their propaganda with pseudoscience and their wacky holistic family practitioner who thinks catching moonlight in a GMO-free poison ivy leaf bowl is good medicine is a great scientific resource and their web site should be “looked into” they’re no longer credible.

When I’m told that their opinions are more educated and valuable than peer reviewed scientific research that has been supported repeatedly… well you get the idea.

I think that dialogue mainly needs to occur with our doctors regularly. I think our nation needs to stop being afraid of education and science.  

Living a paranoid life sucks. The MMR Debate and Vaccine Versus Autism Debate are NOT the ways to go about discussing Vaccine Safety.  If you want to debate MMR and its veracity, don’t ever attach Autism to it.  

First and foremost this is because while Autism might be a difficult neurological difference for individuals to live with (not the parents, the individuals themselves) causing them various disabilities of varying degrees at various times, Autism is not a tragedy.  Ever.  It is not a vaccine injury.  It is not damage.

I’m really tired at the moment, so I’m sure I’ve missed a lot that I wanted to address and probably didn’t say all of what I wanted to very eloquently or with as few words as I should have.  Or, you know, succinctly.  🙂

Edited for grammar. ♡

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