Archive for the ‘ADD’ Category


So Many Mistakes

My intention here: this is not a “poor me” or “poor mom who has an autistic teen” post. It’s about owning up to past behavior that I think seeps into the present even though my ego would like to believe that it doesn’t. I know for certain that it does, though, from a recent wake-up call. I was having a conversation with someone elsewhere online in which I was commiserating and agreeing in the conversation as a fellow disabled person, but due to how I phrased something it came off offensively rather than in a supportive way.

Reblogging this below entry is “looking back at my mistakes, and wanting to make amends” post. Some of it I’m working out “out loud” in an effort to keep other parents from making similar mistakes that I made way back when and still make in spite of myself.

It’s been about eight years since I wrote the below entry. I was so excited because I jumped in feet first into being a parent that LISTENED versus one of those parents who pitied being a parent of an autistic child. I had turned my back on Autism Speaks and others of their ilk. I was speaking for my daughter, but it still came out with my voice. I came off as so. damn. smug.

I know now that my voice and approach came off as if I were speaking above autistic voices; as if I were an authority over them. That was wrong of me.

I placed myself smack in the middle of the Autism community, thus elevating my voice, as a parent. When I described the community as a whole in this post, I placed autistic voices first, but then I added everyone else and they all added up to be More Than the autistic voices. That was wrong of me.

Autistic voices should always, always be first. But this is what the rest of us forget: Autistic people ARE the community. The rest of us who are lucky enough to be in their orbits are only on the fringe of the community by virtue of their invitation by note of; their patience in answering questions; their love for us; their self-advocacy; their opinions about what doctors, therapists, teachers, scientists, agencies, and parents say and do; their personal stories about childhood, employment, relationships. It’s up to us to earn trust because it’s so easily broken. I hadn’t really learned that completely yet.

Sure I’m A Mom

As a mom I’m not even an authority on being a parent to someone who is autistic. Why not? I’m just one mom to one autistic daughter. I may have some insights as a mother, based on a learning curve, but almost all with thanks to listening to the real authorities: autistic bloggers, writers, authors. I may be a near-expert on my own daughter because she lets me in and I ask her questions and let her lead. I pay attention to her communication. I learned that imperative lesson from other autistic people who wished their parents had done that for them; and those whose parents did do that for them. Thank God for them.

My daughter was only seven-ish years old at the time that I wrote that entry. I’d only been following blogs written by autistic writers for a couple of years but in regard to autism, not exclusively. I hadn’t yet figured out how the different language issues were layered yet, and which other issues were severe social and family issues. I didn’t know how serious abuses were yet. I didn’t realize I could trigger someone with a careless word.

Implied Privilege

When I wrote that blog, I was listening to autistic voices but I didn’t necessarily hear them all of the time. I ‘m afraid I made the wrong issues more important than the people.

Worse, I used the privilege implied in being a parent who was researching and listening, albeit not hearing, to be heard and to advocate in a way that I thought was appropriate. Instead I sounded smug. I can only hope that I never passed along dangerous information in that manner. When I come across posts where I think that might be the case, or it’s borderline, I have and will either update or delete them. I don’t want to perpetuate harmful information and I’m sorry for that.

When I stumbled on this post again, it really embarrassed me. It embarrassed me because even though it was eight years ago, I think I still use the tone in it without meaning to do so. I also know that for some people, my sentence structure and grammar can come off as snooty and boy… is that evident in this post I dug up. I was going to either delete that blog entry, or update it. I’m a big fan, 98% of the time, of taking complete responsibility for something posted and leaving it up for posterity with the hope that someone can learn from my mistakes and hopefully see a progression from ignorance to, well, I guess “less ignorant.” More enlightened is my goal.

I chose to leave this one up because it represents a journey, and updating it or deleting it would have ignored the work our family has done to grow.

 

I Apologize

I’d like to apologize to autistic people for my ignorance, past and present. I may have learned things over the years that helped my knowledge, but not my pride. I’m sorry that over the years, I’ve spoken over your voices or in place of your voices as if I were more of an authority. I’m sorry that my hubris got in the way of my humility. Please know that it’s not something that I ever intended. Please know that I’m always open to hearing where I’m making mistakes, my language is inappropriate, my education is outdated. I want to succeed more often than not. I want to continue to work at self-improvement, open-mindedness, humility.

Intended or not, it still happened. I take full responsibility.

I hope that you forgive me.

 

From Harmful to Helpful?

How do I become more helpful to the community (including other communities) I want to advocate with?

  • Be mindful of past mistakes and current behavior
  • More active listening on my part
  • Listen more than speaking; this really is important, so much that I just said it twice
  • Don’t place my voice as an authority in a community in which I’m really only orbiting
  • Ask more often, “How can I help?”
  • Give credit where credit is due
  • Provide qualifiers when speaking such as, “In my opinion” and “In my experience”
  • Remember that plain language, not rude language, is appreciated
  • Remember that it’s not simply advocating FOR… it’s advocating WITH because
  • Go out of your way to make sure the people you converse with know that you
  • Those who have the disability that you don’t have are also self-advocating as a whole and for others in their group who may not be able to self-advocate

 

I know that as a parent, as a woman, I’m going to continue making mistakes because I’m not perfect. There are thousands of mistakes I haven’t even made yet. I’m going to do my best to be much more mindful of how and when my mistakes and failures occur so that I don’t make the same mistakes again, over and over. I can only hope that I’m not the same person I was eight years ago, and that I can grow each day without allowing my mistakes to define me.

I want to be a good example to my children. I hope this is how.  And now I need to press “Publish” but I’m kind of nervous about it. I don’t want this to sit in drafts for weeks or months.

 

If you visit various online communities you may notice that some people refer to autism in one of two ways. As autism or as Autism. As a mother of someone with Autism, I tend to use Autism when spe…

Source: Autism With A Capital ‘A’ | Ever So Gently

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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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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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In my world, words matter, so take a gander.

Holiday:

Old English,  ‘holy day.’

The word originally referred only to special religious days, which is really kind of cool. Thanks to how language works, the word has evolved and is nuanced. That’s called etymology, and it’s really fascinating. So yes, it’s evolved to include non-secular celebrations such as these, and that’s all right:

  • Thanksgiving
  • Independence Day
  • Father’s Day and Mother’s Day
  • Martin Luther King, Jr. Day
  • Labor Day
  • Presidents Day, in observance of Presidents Washington, Lincoln, and some additional figures

 

Yes, there are non-religious people who co-opt the traditions of some religions in a secular way for their own families and enjoyment. There are people of other religions that perhaps pick up the traditions of another religion in a secular fashion simply because they enjoy it. Perhaps they adopt it into their own religious or spiritual traditions because they belong to blended families. I get it that this may upset you, and you may find this to be cultural misappropriation [Cultural appropriation, or cultural misappropriation is a sociological concept which views the adoption or use of elements of one culture by members of a different culture as a largely negative phenomenon].

And it is, you’re right. It’s cultural misappropriation if you choose to look at it that way.

The thing of it is, it’s not malicious intent. It’s not hurting you or others in any way. In fact, it’s binding us all together whether we share a common religion or not. It’s giving us all a tether to each other. 

I believe that when someone wishes me a Happy Holiday, the person is offering a blessing.  I’ll accept it because it’s a gift. It’s a promise that they wish me well and that in that moment I can trust them to be kind rather than malicious. The only “war” in these words is in how the recipient of the words chooses to respond.

Let’s make a promise:

 

No matter where we fall on the spiritual spectrum, please assume the best of each other rather than the worst. We’re wishing good blessings upon each other. We’re wishing each other to be happy and blessed. Whatever form that takes, whatever the words, the meaning is the same.  

 

P.S.

Fair warning: if I catch you reprimanding my children for being thoughtful, kind, and considerate because that’s the kind of children I have (most of the time, at least in public) no matter the particular, specific words they use, I’ll cutch-you. 🙂

But yeah… here’s a nice quick screen capture for you to take a peek at and revel in. ❤ Go ahead… ask Google. This is just a snippet.

 

Origin of "Holiday" is "holy day"

Origin of “Holiday” is “holy day”

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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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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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