Archive for the ‘ODD’ Category

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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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.


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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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Have you heard of The Mighty? It’s difficult to avoid the site. People share so-called feel-good stories from The Mighty on any social media they can find. A dog rescues a firefighter from a frozen lake. A kitten does CPR on a grandmother that’s taking care of her daughter’s newborn son.

Even a stopped clock is right twice a day.

Typically the stories have a common template or two.

  • Someone is victimized and someone is rescued
  • Someone is disabled and needs to be saved from their disability
  • Someone is disabled and oh look! The school got together for a photo op to show off how enlightened they are for being kind to the disabled person at a football game!
  • Some is victimized as the disabled person’s parent, because life pulled a fast one and sucker punched them by thrusting a disabled child upon them but someone else comes along to brighten the parent’s day
  • Someone is living in poverty but someone takes a video of someone else giving a few people a free hot lunch at Panera Bread
  • Someone is living in poverty and is interviewed, having to prove they didn’t cause their own downfall so that others feel sorry for them and will want to donate money and clothes and even offer a job… and then the person that offers the job is the savior
  • Someone secretly videos homeless people to see how they’ll behave if they find money on the ground and see meters run out on cars at the same time


After a very little while you notice the pattern, and you realize that you can’t excuse the ableism and self-indulgence, the finger-wagging at those who did wrong and the praise of those who did right.

You notice that the victims are parents of individuals that are disabled usually use wheelchairs or are Autistic or have Downs Syndrome. One problem is that they’re not really the focus of the articles. They’re the prop, and they’re what the hero and heroine need to overcome or rescue. These stories perpetuate the ableism and stigma of disabilities.

Disabled individuals (or the disabilities they deal with) are perceived as challenges for others to overcome; as tragedies that occurred to the parents. That’s dangerous thinking that dehumanizes the individuals who really need the attention and help … or who don’t want any attention at all and want to live their lives without judgmental intervention… and most certainly without sharing their most intimate and personal issues and photos without permission. The voice is given to the parent, the caregiver, not the child, and so when there are biological parents who choose to abuse or end the lives of their disabled children, they feel justified and people will defend them because hey… look at just how much suffering the parent had to go through.

On the other hand, if disabled individuals are seen as something that needs to be rescued, these stories tend to infantilize disabled individuals. They can’t care for themselves or speak for themselves, much less advocate for themselves, much less be seen as human.

These stereotypes and ableism perpetuate the notion that disabilities are something to grieve over, and something we must prevent at all costs, cure at all costs, fix, and feel badly about. For the sake of the parents, and for the sake of the little babies.

Worst of all, it causes people to believe that disabilities decrease the value of a life without the intervention of the kindness of strangers.

Either way, the pattern is that disabilities have victimized parents and caregivers and the people who  have disabilities are often not really viewed as being people, but props in these stories.

This pattern has the Autism self-advocacy community and others in the Disability Community in a rightfully angry discussion about an article that has now been pulled by The Mighty. I know, I took the long way round again to get to the crux, sorry.

A supposedly autistic mother to an autistic child posted an article that included a “meltdown bingo” card that was intended to be humorous and supportive to other parents of autistic children. I was embarrassed and bordering on irate when I saw it pop up in my feed from following The Mighty on Facebook (The Mighty was a recommendation to follow a long time ago, I mindlessly clicked it). I clenched my jaw and kept from commenting on the article because I couldn’t keep my fingers from typing something less than polite, less than commiserative. I closed out of it and then I relaxed because thankfully I don’t have any friends on any media would share that tripe and I knew it wouldn’t show up in my feed again.

Except it did show up in my feed again… it started showing up in Facebook and on Twitter and on several of the blogs I follow. The subject of it did, anyway, because the original article was pulled and The Mighty is trying to apologize for it and “recognizes that it was ableist” when they never intend to post anything ableist. Except… well. There’s a firestorm bursting through all of my social media justifying that initial feeling and helping, allowing me to put to words what has felt wrong with The Mighty. That specific article from the autistic mother with the autistic child and the autism meltdown bingo card tipped the internet’s kitten right over.

I’m relieved that the article was pulled (don’t worry, I’m sure it was screen capped or cached somewhere for posterity), but only after there was a lot of backlash for it. This post here from Lemon Peel is one I love hard and has some great links.  CAN U NOT: A Twitter Ode From Me To The Mighty | Lemon Peel

We parents? We make mistakes. Sometimes we make them publicly. Sometimes we make spectacular mistakes, embarrassingly horrifically ghastly mistakes. The challenge we face is to apologize from the heart, to learn from them, to try to repair the damage we’ve done when possible, and not to repeat the mistakes. Sometimes we have to accept that reparation isn’t possible, but we still have to try. Then we have to move on and once we know better, we do better.

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Before I begin, I want to take special care. If you’re an autistic reader and you grew up in a hostile household that is or was unsupportive of your neuro-diversity, you may not want to read further; I don’t want this post to take away too many spoons for the day or the week from you.

There’s a “thing” I saw a few weeks ago that, at the time, I wanted to rant and rave about immediately: An anti-autism page run by Mommy martyrs.

I did but I deleted the rant.

Instead I chose to let this entry marinate for a while to see if I could come to terms with any of it. I don’t think I can. What makes me angry and saddened is the fact that I feel this way as a non-autistic parent: how much more horrifying is it when an autistic individual comes across Mommy Martyr pages?

The Autism Awareness movement has moved headstrong into an Autism Acceptance movement with such ferocity and vibrancy that has so much more to do with the self-advocacy of autistics than it does of their allies and advocates. Isn’t that always the way? Who better to know what autistic people need than autistic people?

Let’s get something straight: It’s much more than an Autism Acceptance Movement. It’s an  Autism Civil Rights Movement. It’s part of the larger Independent Living Movement, one that’s been going on for over five decades.

Goals include forging new, positive attitudes about Autism by dispelling myths; focusing on the positives; teaching others that the challenges can be dealt with and handled with input from the autistic person; educating the general public; educating people who are new to the diagnosis, and parents that are on the cusp of receiving a diagnosis for their children; not putting the onus of education onto autistic people and their families. We need to bring forward new studies but most importantly showcasing the thoughts and self-advocacy of autistic self-advocates. Who better to know what autistic people need than autistic people? Who better to know how they feel and felt growing up? Who better to know how Autism can change from toddlerhood through childhood through teenhood and adulthood than autistic people?

In other words, change the conversations surrounding Autism. Let actually autistic people be the driving force of the conversations. The conversations shouldn’t ever be where autistic individuals have to justify their existence and parents have to justify their pre-natal choices or how they parented during infancy. Parents shouldn’t have to justify shunning the fear-speech and fear-propaganda in favor of embracing their child’s Autism.

So yes, I stumbled into a Facebook group of Martyr Mommies and Daddies who were, to say the least and in the most kindly way possible, unsupportive of Autism. What I saw proves that there’s a lot more work to be done, far more than I realized. There’s not just misinformation out there but outright bigotry and hatred which I knew existed. I read and listen to the life stories of actually autistic people both online and in person. This was on a level far more bitter and sinister than I ever realized.

There’s still a lot of work to be done in getting people to recognize that Autism isn’t a mental health disorder or a psychosis. It doesn’t cause a violent predisposition. I could go on and on all day listing all of the things Autism “is not” but that’s not really what this post is for.

Breathe in, breathe out.

This post is about the terrifying way parents, caregivers, and would-be parents were speaking about Autism on what what supposed to be a support page… but really wasn’t a support page. It was a parent martyr page and yes, there’s a difference. It was an anti-autism hate group. There were things there that I can’t even remind myself to think about, let alone share in this post.

Parental support is when parents, sometimes of a particular specific group of children (possibly even adult offspring) need the emotional support from those who have similar experiences and understand their need to vent, ask questions, express sadness, share particular milestones, provide hope, provide a viewpoint from someone with experience to say, “It’ll get better,” or offer helpful resources. Is it rough being the parents? Sometimes. Sometimes often. But I remind myself, as do other parents that seek support, that during the times it’s rough for me, it HAS to be more difficult for her. It’s those times I can’t feel sorry for myself, those times I need to remain strong so that I can show her I’m here to raise her and show her how to become a grown up. That I’m learning with every experience I’m blessed to have with her.

Parental martyrdom is… well, it’s something else entirely. It’s a state of mind in which parents are mired in a muck of belief and delusion that their child’s disability wasn’t something that occurred to the child, but was an affront and betrayal to the parents.  The parents see no saving grace in anything about their child, although they may claim they cherish the child that was stolen by the disability which of course is what they “really” hate.


I was reading through posts, comments, shared articles, and I felt the worst sort of anxiety because I imagined my child reading what was on that page. I imagined my autistic friends and even acquaintances and consumers reading what was on that page. I wanted to protect anyone from reading that trash, especially parents and young autistic children about to get their diagnoses, from ever seeing anything on that page regarding the attitudes, opinions, pseudo-science, hate speech, anti-autism resources, fear propaganda and parent shaming… it just went on and on.

I felt twisted in knots realizing that most of the fiercest anti-autism anti-advocates out there are non-autistic parents of autistic individuals. These were parents and non-parents alike hating children: my child, others children, their own children, and the adults they would become under the guise of only hating their Autism.

Sound familiar? If you’re Christian it might: Love the sinner, hate the sin.

As a Christian woman I know it doesn’t really work that way. That saying is a cop-out. Hate is hate.

There were also those anti-autism anti-advocates who are scared to death. (I call them Frothers: frothing at the mouth in fear mothers) that their future children or their already-born children will “catch” Autism in some manner. They see Autism as some terrible, tragic disease that steals our children and has become a terrible epidemic.

On this particular page, Autism! Causes! and Autism! Tragedies! lurk behind every closed door, inside every shadow, within every single in-between.

There’s no such thing to them as Autism being natural or having any good qualities. None of them could account for any autistic adults that used to be just like their children that are now speaking or communicating successfully in other ways; holding jobs; dressing and performing other tasks that as children seemed impossible. In their minds, their children were stuck in an impossible snapshot, never capable of any sort of progress or… at least not the sort of progress that would make them appear non-autistic. As so many teen and adult autistic persons have had to endure, the phrase, “Those high functioning people with autism aren’t like my child, who will never _____.”

Anyone who showed any ounce of intelligence, reasonableness, positivity, and acceptance for Autism was called out as a troll and crucified even if they identified themselves as autistic. I knew it wasn’t worth it to join in to add discussion to try to add something reasonable or moderate, because they weren’t interested.

It had become group-think where they were calling for blood.

If there wasn’t blame there was criticism. It was a very scary page to be, very anxiety inducing, and would make anyone choose sterile bubble homes with in-home sustainable gardens that were equally sterile, drinking only your own sterile pee. Except even that has risks, of course. It went far beyond Vaccine Denialism, Anti-Vax, or Anti-Some Vax. Those seem tolerable compared to this vileness.

The entire purpose of the page was to assign blame of How Autism Happens because of:

  • problems in parenting;
  • parental genetics;
  • grandparents daring to raise their children the wrong way even though supposedly those were the Good Ole’ Days;
  • no one raises their kids the way they did in the Good Ole’ Days any more
  • damage to the Earth;
  • damage to genetics;
  • vaccine injury of any kind;
  • damage to all food and water supplies;
  • mom getting sick during such and such stage of pregnancy or just before pregnancy;
  • mom not getting enough or too much of whatever supplements;
  • mom or dad being too old at the time of conception;
  • mom or dad being too young
  • in vitro fertilization;
  • life-saving measures on a pregnancy that was only 6 weeks along;
  • not enough of this, too much of that;
  • stood near an old-fashioned TV too long;
  • eating food from a microwave during pregnancy;
  • ate food cooked on an electric stove;
  • ate food cooked on a natural gas stove;
  • went camping without checking to see if a bear took a crap nearby and the crap fumes didn’t include something unnatural that the bear ate (I SWEAR TO GOD);
  • that one time mom let the playdate mom prepare a snack;
  • the library has books filled with lead paint;
  • filled the car with gas instead of asking someone else;
  • slept too long, slept too little;
  • ate a single turkey sandwich;
  • ate meat during pregnancy;
  • ate vegetarian during pregnancy;
  • ate a hotdog;
  • drank a Coke;
  • ate food at a fair
  • ate that Cheerio off the car floor once
  • had a glass of wine before knowing about the pregnancy;
  • Grandma drank a glass of wine before knowing she was pregnant;
  • Grandma or Great-grandma had her children vaccinated and that’s caused genetic damage so it’s really inherited vaccine damage;
  • Dad’s shorts were too tight;
  • Dad’s vitamin deficient;
  • there were pets in the house;
  • there were litter boxes in the house;
  • the child didn’t play outside enough;
  • the child plays outside too much;
  • the child wasn’t wearing cotton through the age of diagnosis (no, really);
  • the child was wearing cotton, but it wasn’t organic cotton (seriously);
  • the wrong light bulbs in the house, the car, the school, on playdates;
  • not enough organic, all natural, blah blah blah glarg.

Parents who were asking for advice and help about various things, not just what they thought caused and contributed to their child’s Autism, were ganged up and shouted them down. Anyone viewed as showing real support, showing scientific research rather than pseudo-science or pulling a fresh new opinion based on nothing out of their, ah, nostril was a troll and part of the reason for the Autism “epidemic.”

This was a form of extremism I’ve never seen or dealt with.

That page made me fear using my own toilet and trusting my mom and mother-in-law to be in the same room with my children.  It was a Doomsday Page.  The only support was high-fives over sharing new doomsday information and how they’re the only ones informed enough to know where to find the newest or “best” pseudo-science or anti-science propaganda.

The only support was for the poor, poor individuals who ranted and raved, and the poor parents couldn’t save their own children but were trying desperately to save everyone’s else’s unborn child or shed light on The Cause.  It was showing only the absolute worst, most extreme of the extreme negative symptoms that may or may not have been due to Autism. Every single one of them was shouting the other down trying to be heard, trying to share the scariest most rewarding knowledge.

I can’t imagine what assigning blame or causing abject piss-in-your-pants debilitating fear is supposed to accomplish. Living in that emotional state can’t possibly be healthy for anyone. It’s constant fear, constant anxiety, and the amount of anger… it was astonishing.

Finding causes is very different than assigning blame. Maybe it’s semantics to some, but I really think there’s a difference.

Finding a cause indicates that one is looking at scientifically based proof and evidence. I would be fascinated to know if my hypotheses about which side of the family contributed most to my daughter’s Autism is correct. I would be fascinated to know just out of curiosity sake. But I also fear that science could be misconstrued or used improperly in the wrong hands. Finding a cause has possibilities of improving lives and reducing aspects that are disabling, which can mean improving services that are kind and humanity based.

Assigning blame is a vehicle of able-ism, guilt, and shaming and so there’s a hugely emotional component.  It bleeds all over the innocent and colors perspectives in an extremely biased way. Assigning blame and getting caught up in it is a direct lead into bigotry of disabilities and Eugenics. Those who assign blame are those most likely to take any cause found and use it in a manner that would extinguish valuable lives in an effort to improve their own. Those who assign blame are more likely to cause harm. Those assigning blame are more likely to cause harm if they ever find a legitimate cause.

I don’t know why I’m surprised to find a page like that, except that I suppose I believe what I tell my daughters:

Have hope, and the world can change as long as we educate people and will it to change.

It’s in my bones to believe and be positive. I don’t want to believe that our experience, my daughter’s experience, is only a microcosm, and her childhood is a rare thing being accepted completely and loved wholly. I don’t want her to have to believe that she’s lucky to have a mom who accepts her as she was born and willing to help her learn the ways she learns best. Shouldn’t that be a given?

I want to have hope that when it’s my daughter’s turn to set the horizon on fire, she can do it with as many paintbrushes as she desires and wear a rainbow unicorn horn as she does it. I want to know that more and more children, teens, and adults like her are having more and more experiences like her. She shouldn’t be unique in that way. Being loved.

It shouldn’t be unique that I believe pages like that are an aberration and that autistic individuals are a blessing. It shouldn’t be unique that she’s growing up without having to go to therapy for anything other than what her non-autistic peers would go to therapy for:

  • Mom didn’t bake apple muffins often enough, surely not enough in the summertime
  • Mom kissed me too much, and I hate the sound and sloppiness of kisses
  • Mom insisted that the money tree in the backyard didn’t sprout enough cash for all of the video games, chocolate, and Pokemon critters a girl could need
  • Mom wouldn’t let me be friends with the girl who bullied me and who stole my favorite toys
  • Mom couldn’t always read my mind, every second of the day even when she was at work and I was at school and I wanted more than anything for her to just know that I wanted her to pick me up so she could paint my nails

It shouldn’t be unique that when finding out there are people who think Autism is a bad thing, it’s a huge shock.

It should be shocking that people believe the negative stereotypes and refuse to educate themselves by seeking out others who validate their hate and narrow-mindedness. The bigotry should be shocking. So shocking, I think, because of the viciousness of it. No one held back their real thoughts there. No one cared who saw what they wrote. No one cared if in the future their child might stumble across their words as I had because it didn’t even cross their minds that their children would one day be capable of doing such a thing.

I won’t share that page itself. It doesn’t deserve attention. I just think it’s important to know that this viciousness is indeed still out there trying to undermine something beautiful.

I’ve come to rely on this quaint little phrase (I’m sure I’ve said it here before) that my Sweet Girl overheard me say once recently during the course of a larger conversation. I snagged it off of a meme a couple of years ago, so it’s funny to me how this was the phrase she approved of most:

“…and so in the middle of the doctor’s office, I shouted, ‘Being alive causes Autism!’ It just made me so mad.”

She giggled and repeated in a soft murmur,

“Being alive causes Autism. Mmm hmm. Yes.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I can’t say that I disagree.

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

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