Posts Tagged ‘ASD’


I can’t tell you how much I appreciated this post from Asperger’s: Through My Eyes. It offered insights I hadn’t realized before.

Aspergers and Lack Of Awareness of Body Signals | Aspergers: Through My Eyes.

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I ended up wearing rainbow colors that day that I wrote about doing anything, even wearing blue. I just… I realized that supporting her meant more than wearing the blue because it’s her favorite and she asked me and she thought I’d be celebrating her. It meant so, so much more and I tried to explain why I wore a rainbow-flower skirt with a purple shirt (my own favorite color) in a way she could understand. But how do you explain that wearing blue, lighting it up blue, is a trigger event and silences Autistic Voices? That anything explaining away why it’s okay is really not okay?

And that’s what I think I did in that entry, and I wholeheartedly apologize, no qualifications.

So how did I explain to my daughter why I broke the blue promise…

Rainbows and flowers are love, and everyone loves flowers. Autism is full of wonderful colors, not just blue, and even if the flowers in my skirt were fuzzy at the edges they were far prettier than puzzle pieces all over the school walls. She nodded in agreement.

I told her that I wanted her to be able to choose from all of the colors in the rainbow when she’s making friends, when she’s thinking, when she’s getting dressed, when she’s looking outside, all just like when she’s painting or making crafts. She nodded more with each example.

I told her that an agency named Autism $peaks created the Light It Up Blue idea, and that we don’t like all of their ideas because some of their ideas include wanting to cure Autism. I asked her if she remembered hearing about that several days before, and she nodded with a Very Serious Expression on her face.

Then I explained that there are other supportive agencies that want to help her and others like her grow and be happy, and learn to be a self-advocate as she grows up and becomes a teenager and an adult.

I explained that sometimes we were going to have to have different kinds of conversations now about how some people think Autism is not a good thing and how we can change those ideas by showing them the good things and teaching them about the ideas that they don’t quite have right. That sometimes people believe things about Autism that aren’t true, but that we can help educate them. She nodded. She seemed to like the idea of being an educator instead of the student.

I explained that there would be times we would be talking about the better ideas that Mommy has read about from the good agencies so that Mommy can better understand who is a helper and who is not… and that I think she’s getting old enough to learn those things too.

She nodded her head, with a furrowed brow, and said, “Mm hmm.”

“Do you have any questions?”

“Can I still wear my blue skirt?”

“Yes. Always. You can even keep blue as your own favorite color.”

“Mm hmm. Yes.”

“Do you want to ask me more?”

“I don’t know.”

She walked away. So that was that.

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Great way of showing what I’ve been trying to say, but more succinctly. Check out this post below from Jess at Diary of a Mom.

communication | a diary of a mom.

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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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WARNING: To teen or adult autistic individuals, I’d like to take care in warning you that this blog entry could be triggering to you.  I personally will not discuss ABA in detail because due to how our doctor referred us and who we were referred to, we chose not to pursue ABA therapies for our daughter.  That means I can’t speak to this from personal experience from a parenting standpoint nor on behalf of my daughter.  However, the link titled “ABA” will be discussing ABA therapies in some detail, so if you feel it will trigger trauma for you, please consider refraining from clicking the “ABA – Unstrange Mind link.

This link I’m about to share from Unstrange Mind by Sparrow Rose is probably one of the best and most comprehensive laymen’s explanations of why ABA therapy in its original intended form is, at best, misguided and at worst terribly abusive.  It also explains the difference between “different types of ABA” considering that in order to get an appropriately non-abusive therapy covered it must be classified as ABA for insurance purposes.

Most importantly, it explains to every loving, caring parent who takes their child to ABA and might fear that they’re being accused of abusing their child by allowing abuse through ABA what to look for in the therapist and the therapy their child is attending.  It talks about intent in bringing their children to ABA.

“ABA” | Unstrange Mind (click here).

This blog entry is a gift and ought to be read by every self-proclaimed Autism specialist, advocate, pediatrician, ABA therapist, teacher, special educator, parent, Autism advocacy agency, and anyone else whose lives might ever be touched by Autism or ABA.

This is so important.  When adult autistics speak, please listen.

 

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Happy Friday [I forgot where I got this image, sorry... I just googled for Lemonade Happy Friday, although I know it's not lemonade ;-)  ]

Happy Friday [I forgot where I got this image, sorry… I just googled for “Lemonade Happy Friday” although I know it’s not lemonade ;-) ]

This morning, Sweet Girl had an apple for breakfast and while munching on that apple she sat on the couch with me and watched the Today Show with me… and she was just so happy.  Since she didn’t have to get up as the asscrack of dawn (aka 6:30) for extended school year bus, she got up at 7:30 with me.  Gracie had me all to herself and she took advantage of it, snuggled up next to me on the couch.

She talked my ear off.  Yes, yes she did.  Because there was no one except Daisy the cat to listen in and interrupt and tell her she was wrong, stupid, to stop talking, to interject with something or other behaving jealously…

She just had Mommy all to herself.

She talked mostly about getting her own android so that she can show me all of the talking she won’t do on it and all of the apps and texting she will do on it.

She wants my phone when I turn it in for an upgrade.

I had to explain that when I turn it in for an upgrade, it will be considered an Old Lady phone and so decrepit it will be useless.  I wait until my phones are useless, with the exception of my last phone when I gave it to my eldest so she could have one when she started middle school.

She tried her darnedest to convince me to get her a cell phone and why she deserves one over her little sister.  You’ll note by the length of the rest of our conversation that it’s about much, much more than the cell phone.  It’s about sisterly relationships.  She must have been ruminating on this for quite some time and trying to figure out how to introduce her problem with her little sister in a way that Mommy would finally Get It.

“But you will give me your phone.”

“No, honey, we talked about this.  A lot.  My phone will be broken when I upgrade.”

“I am old enough.  Anna is not old enough.  I am starting 6th grade.  Anna is not responsible.”

“I already let you use my phone when you want to at home.  What happens during the school day with cell phones?”

“Electronics are NOT ALLOWED.  I would get in trouble if I use electronics.  I would use a Chromebook.  I do not want to get in trouble.  Chromebooks are for school.”

“You’re right.”

“Yes, because it is against the rules to use your electronics in class.  The teacher will TAKE IT” quick swipe of her arms through the air “AWAY!!!”

“I think you’re right.”

“I know.  Do I get your phone when you get a new one?” with a squeal.

“Not yet.  It won’t happen for a while.”

She paused here, and her face darkened.

“What’s wrong, Sweet Girl?”

“Anna thinks she is the boss of me.  She thinks she can tell me what to do.  She thinks she knows everything.”

“Like what? Tell me.”

“She is always saying I will get hurt and, um, she yells and it hurts my ears.”

“Do you get hurt if you don’t listen to her?”

“I… sometimes.”

“Do you want to know a secret about Anna?”

PENSIVE FACE WITH FURROWED BROW… she’s preparing to hear something she doesn’t like.

“Your little sister loves you with her whole heart.  She loves you more than anyone else in the world.  That means that if she thinks you’re not safe she’s going to try to protect you.”

“Hmm.” nods

“And do you want to know why it seems like she thinks she knows more than you?”

“Hmm.” glances at me

“It’s because she remembers some things better than you do sometimes; she remembers how things work a little bit better or that doing something a certain way might get you hurt.  She doesn’t want that to happen.  Right?”

“Hmm.” scowls but nods

“What she wants is to take care of you.  She enjoys that.  She likes to know that you’re safe and happy.  She doesn’t think you’re a little baby or a little kid that she has to take care of.  She just wants to make sure that her big sister doesn’t get hurt and that she’s happy.  Does that make sense?”

“Hmm.”

“She doesn’t like to fight with you.  She hates to fight with you.  It hurts her feelings when you fight.”

“She thinks she is more grown up.  She is not more responsible, I am more responsible.  I am older.  I am going in a middle school.”

“You are definitely learning to be responsible.  You’ve been helping around the house a lot more lately.  You help me when we go shopping together.  You did a great job with the grocery list yesterday.”

“Yes, I did.”

“I think you’re both learning and growing up, and I think your little sister is trying to help you grow up so that you can do it together.”

“She is bossy.  She tells me what to do.”

“Well, do you think that maybe sometimes you tell her what to do too?”

PAUSE

“I think that she’s trying to show you how to do things safely, and you know how she likes things to be ‘just right’ but you know what else? She also wants to do things WITH you so that you’re not alone.”

“Yes.”

“And you know, she just thinks about things in a different way than you do.  Your little sister’s brain works a little differently than your does so she doesn’t always understand what you’re thinking.”

“Yes, yes.”

“It might sound bossy if she thinks that she has to talk more loudly so that you’ll pay attention.  Do you understand?”

“Hmm.”  BIG PAUSE “Juliana is bossy.”

“Well… um… but she’s your big sister and you’re supposed to think she’s bossy.  She’s a leader too.  And not for nothing, honey, but when Mommy and Daddy aren’t here, she’s the boss.”

“Mom, did you hide your Kindle?”

“No honey, it’s plugged in.  Did you want to read today?”

“I don’t know.”

 

 

Oh my gosh, I love this girl.  Dear God, I love my daughters.  Love, love, love.

 

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