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.

Happy April! What a gorgeous day today is. All of my girls are feeling well; it’s sunny and temperatures are supposed to reach 40*F; I’m finishing my first cup of coffee while wearing one of my favorite sweaters before getting ready for work.

I think it’s time to assess the things I’m grateful for, especially with Easter coming up this weekend.

Today, on April 1st 2015, I’m very grateful for:

  1. coffee
  2. very large coffee mugs
  3. like, coffee mugs that will fit three 12-oz servings of coffee to drink all at once and that’s like… oh sheesh, math… 36 oz in one mug!
  4. the fact that my family understands the importance of coffee in my life
  5. my husband
  6. my children
  7. seeing so much good in my daughters, with love reflected back to me and in everything they do
  8. my brothers
  9. all of my sisters-in-law
  10. all of my brothers-in-law
  11. my parents and my mother-in-law
  12. my very best friends, my chosen sisters
  13. the good health of my family and friends
  14. my job
  15. the fact that most days I can still function enough to go to work
  16. working toilets
  17. working heat
  18. blankets
  19. sweaters
  20. fluffy slippers
  21. my Kindle
  22. kitchen gadgets
  23. the fact that it hasn’t snowed in two whole days
  24. God answering my prayers in small ways that matter
  25. a working phone
  26. working clothes washer and dryer
  27. payday
  28. my invisible internet friends
  29. oh my gosh, my CATS of course
  30. and how did I not put chocolate on this list by now?
  31. and Girl Scout cookies?
  32. God, there’s something wrong with me today. I also forgot hot showers
  33. and paper towels
  34. and freshly washed warm bath towels
  35. being able to bake with my daughters
  36. family being appreciate (usually) of my cooking)
  37. a (kind of) working (kind of) reliable car
  38. getting X-Finity over frontier because frontier sucks donkey balls, let’s face it
  39. DVR
  40. oh my gosh, why isn’t my hairdresser further up this list? clearly great haircuts from my awesome stylist ought to be further up this list. Last but not least, saved the best for last, and all that, right?

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. ”


“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.


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