Archive for the ‘ASD’ Category


Trigger warning for abuse; trigger warning for abuse of disabled individual.

Every morning as I get ready for work, I put our local news on the TV. It helps me keep track of time as I also get the girls up for school. I know that there’s always the likelihood that I’ll hear a story that’ll turn my stomach and make me wish I hadn’t turned on the TV. Most of the time, I can get through the local negative news without getting upset. It’s the national news that tends to upset me more lately. Not so this morning.

In Connecticut’s capitol city, a woman was arrested on a felony account of “cruelty to persons” charges after her 17 year old son died from severe malnutrition and indications of abuse. He was autistic. The case is being investigated as a homicide. The office of the chief medical examiner reported Matthew Tirado’s “suspicious condition” to police; he was 5 feet 9 inches tall and only 88 pounds. There were indications of abuse such as lacerations, broken bones, and bruises on his arms, face, and chest; they describe his body as emaciated and skeletal. The woman reported as his mother, Katiria Tirado, only called 911 when he was vomiting. He died on Tuesday morning past.

This young man is going to need justice. If Katiria Tirado dares to use his disability as an excuse especially when there’s a healthy 9 year old girl in the house, I hope that the Federal Court system sees through her. There’s no acceptable reason or excuse in what happened to Matthew. I don’t care if he would only eat McDonald’s fries, smooth fruit yogurt, and banana bread; I don’t care if had challenging allergies and self-restrictions with food. There’s always a way.

It’s a mother’s job to find a way. It’s a mother’s job to DON’T ABUSE and DON’T MURDER your children even when, especially when those children are disabled.

When a couple chooses to have children they choose to take on everything that means. There’s an implicit understanding that disabilities could be involved and thus there’s an implicit understanding that as parents, YOU’RE SIGNING ON FOR CARING AND LOVING FOR one or more children that may have disabilities and challenges that you may or may not have expected. You make a promise when you choose to be a parent, and that promise is that you won’t abuse or murder your children. You promise to always do your best to provide for your children.

The children in this home had a roof. But only one was well-nutritioned.

I’m sure at some point someone will tell me it’s not my place to judge this mother; that there were possibly or likely circumstances I haven’t considered; that I haven’t walked in this mother’s shoes; that I don’t understand disabilities and how they can affect a mother or a family especially Autism; that I need to put myself in that mother’s shoes; that you can see yourself in her position.

To those of you who don’t know me because you don’t know this blog, and you think those statements will fly here or anywhere else:

Those comments make you a murder apologist. If you wouldn’t excuse the murder of a non-disabled person, then don’t excuse the murder of a disabled person especially if that murderer is the parent. I don’t accept anyone identifying with the side of the murderer and abuser of disabled people. I don’t tolerate it.

If you don’t know me or this blog, you ought to know that I’m a disabled woman. I have a teenage daughter that’s autistic. I have another teenage daughter with severe ADHD and ODD. I know what it means to have to cope with challenges, and to have my family cope with my disabilities in turn. But disabled or not, with disabled children or not, I wouldn’t accept what’s happened to Matthew Tirado. And you shouldn’t either.

If I seem a bit impassioned here, it’s because I’m feeling emotional. I can’t seem to calm down. I wish there had been an advocate for Matthew. As the investigation goes on, I’ll be following closely. I realize that I AM making some assumptions here, but I haven’t voiced the great majority of them. I just know that a grave injustice occurred and I’m sad and angry and grieving.

 

#MatthewTirado #Justice4MatthewTirado

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

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

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

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

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

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

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

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

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

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

Source: ASANs Past Abuse and Moving Forward – ASParenting

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

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

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

 

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

 

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

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

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

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

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

This time was different.

 

You. Are not a good advocate.”

 

And then Sweet Girl walked away.

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

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

I can give an example or two.

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

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

“Hi, do you need help reaching that?”

 

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

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

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

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

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

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

My favorite is,

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

 

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

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

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

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I’m a non-autistic mom who is blessed to parent an autistic daughter along with her two sisters. She’s an amazing, incredible young lady who is one of the three brightest lights in my life. This Sweet Girl finds being autistic to be a wonderful thing, something that she needs, something she doesn’t ever want anyone to take away from her. She says it makes things hard for her but she still needs it or she wouldn’t be who she is. She finds it shocking and appalling, and it hurts her deeply that even if Autism can make life difficult enough to cause some disabilities, that anyone would think up the idea, let alone that it’s a good idea, to cure anyone of Autism. She finds the notion of vaccines causing or having a correlation to Autism as ridiculous and silly. She can’t find words to explain how odd it is that she should have to defend her existence, or that anyone would insist on separating her from one of the very things that makes her the Sweet Girl that she is.

“Without Autism, I would not exist.” ~Sweet Girl

And so, with that reminder, I’ll just add my caveat now, before April: we shall NOT light up anything blue. We do NOT support puzzle piece comparisons. There are autistic self-advocates and bloggers who explain why far, far better than I can because it’s not my life on the line… it’s theirs. I value their opinions highly, especially those women who I’m so grateful to have found to show me what my daughter’s adult voice might appear like. Through their suggestions and sharing of experiences, it’s helping to make our journey through her childhood and my parenting go more smoothly. I enjoy the insights as much as I appreciate them.

Women like Amy Sequenza are your child. So I’m going to share two of her blog entries.

Why Autism Speaks Hurts Us – Amy Sequenza

Is Autism Speaks a Hate Group? – Amy Sequenza

Plus a bonus one from a different blog.

This is the last time I’m going to say this – The Autistic Beekeeper

And I’d like to suggest looking up #BoycottAutismSpeaks. You won’t regret it. Oh yes, and this handy dandy info-graphic. Share it. Download it. Memorize it. If you’re a parent to an autistic individual, pay special attention to the organizations that help autistic people. Include the Autism Women’s Network in there too. They’re pretty fabulous.

 

You may say, “But my child is autistic and we went to Autism Speaks, and they were really good!” or “But I know someone who speaks very highly of them because of their experience!” My response to that is, “Great. Good for you, I’m truly happy for you.” The issue I have is that any money you donated went towards research to remove the uniqueness from your child that makes him or her who she is. And if nothing else, even a stopped clock is right twice a day. I mean, last year even Autism Speaks came out and said, “Hey y’all, get your kids their measles vaccines.”

And on the Today Show yesterday, their founder, the father of an autistic son, floundered over how amazing his organization is for parents. Parents, not the autistic individuals. The support is there for parents who are stuck in the loop of believing Autism is a tragedy that happened to them through their child, or that God is punishing them. Parents who believe their child is damaged, sick, and imperfect. Not whole. Hiding behind the Autism. The Autism took them away. Broke them. And you know what? Matt Lauer sucked it all up with a dewy eyed spoon. He may have been a little drunk.

Parents… I remember that initial shock and the feeling of wondering what to do next. I remember wondering what *I* was going to do. It took me too long of wondering “why me and my child, why my family” before I was hit with the bitch stick. It’s really not about me, it’s about this spirited young lady I’m privileged to parent. The only “me” part about this was what was I going to do for my child and how to teach her to self-advocate. How would I teach her to become an adult that could navigate an amazing world.

Your child needs you. Show your child how amazing the world is and you’d better remember that the world is still amazing. The world is only as small as you allow it to be. The world is only as tragic as you allow Autism Speaks to let you think it is.

Stop the silencing of Autism Speaks and listen to the autistic self-advocates.

#AutismSpeaksSilencesAutisticVoices

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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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There’s a meme going around with an ancient quote from a sixth century philosopher, Lao Tzu, so-called father of Taoism. It reads:

If you are depressed, you live in the past.
If you are anxious, you live in the future.
If you are at peace, you are living in the present.

I know this is meant to soothe or be, you know, wise. I know that some therapists use a similar approach with their patients.

The more I see this float around Facebook and other social media… the more I see this in my support groups… especially the ones where so many of us have anxiety and depression in addition to our physical disabilities… the more this quote makes me realize how much it’s adding to the stigma and misinformation about Depression and Anxiety Disorders.

It insinuates heavily that we can choose our state of peacefulness, anxiety, or depression. Granted this quote is from the sixth century when they didn’t have the knowledge we have now about neurological differences and disorders like Major Depressive Disorders, Anxiety Disorders, Bipolar Disorders, Schizophrenia, Traumatic Brain Injuries, Intellectual Disabilities, Emotional Disorders, Mental Health Disorders, Behavioral Disorders, and more neurodiversity. Even if Depression and Anxiety aren’t the primary diagnoses, they can still be a secondary diagnosis and still be significant. There’s a biological basis for these concerns.

In other words, you’re born with it. You don’t choose it.

Depression has nothing to do with living in the past. Anxiety has little to do with living in the future. And let me tell you, living in the present is not usually a picnic but is in fact very often what causes anxiety and depression if we’re talking about situational depression and anxiety.

If we’re talking about situational depression and anxiety, talk therapy and using tools learned in therapy and coping mechanisms learned by experience in life can help ease the symptoms. Talking down, getting sunlight, exercise, proper diet, and all of those mood boosting things that we endorse (I do, really I endorse them because they’re helpful) are wonderful for situational depression.

If we’re talking about Major Depressive Disorder and Generalized Anxiety, if we’re talking about other neurologically based depressive disorders and anxieties tied to them, there’s no control involved. There’s no talking it through. It’s not rational. Talk therapy may help, medical treatment may help more.

But it’s not a choice. And this meme… this meme of this quote is damaging to those of us who aren’t just going through Seasonal Affective Disorder or are sad because our boyfriend is cheating. We can’t just buck up and get over it because it’s not situational. It’s biological and we can’t turn it off. We have to let it cycle. A situation or mood may trigger it, but there’s usually a lead up with signs pointing to it. We can’t always see them or recognize them.

Please, if you see this meme with this quote, pretty lettering and all, don’t share it.

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