Archive for the ‘Autism Ally’ Category


When it comes to parenting, the books don’t always have the answers. Each book has a special parenting method, and if you just stick with that special method you’ll have amazing children. They’re grow up to be well behaved, respectful, intelligent, daily blessings of joy and love.

Those books are lies.

Most parents figure that out by the time their children are 1-to-2 years old. Sometimes it takes longer, but that’s likely due more to the temperament of the child and not the stellar parenting as followed from the advice in those books. They just might make it to 5 years old, but if that child really is just a totally chill little human being, it takes having a second child with a completely different temperament.

The books were worthless except as kindling until our third child. By then, I had realized that it’s not the book but the child, and every child has a different mother.

Every child has the mother they need because they’re all different people. The books should really only address the care, when it comes down to it. We need books that are honest and straightforward that will be Actually Helpful to new parents of babies, and stressed out parents of toddlers and teens.

Books parents need:

Mostly Judgement-Free Parenting Series

“How to Feed My Baby: Until he’s not hungry any more”

“How to Diaper My Baby: What’s best for your wallet, your tolerance for cutting coupons, your love of Pinterest, and ability to sew”

“The Best Ways to Get Baby to Nap: Learn baby’s sleep patterns, then work around it”

“How to Get Baby on My Schedule: Ha ha ha ha ha ha ha!”

“Toilet Training by One: Good luck with that one”

“How to Feed a Picky Eater: Give her what she likes”

“Discipline? Yes, always, your child is not your friend or best buddy”

“Discipline: You have more options than ‘spanking’ and here they are”

“Going Back to Work After Baby: Why not, after all Dad gets to and who’s to say that Dad shouldn’t be the stay at home parent anyway?”

“Staying Home/Going to Work After Baby: Budgeting, Care for Baby, Scheduling, Family Time, Let’s Work it Out!”

“How to Prepare for Going to the Hospital for Baby: includes a tear out sheet of “List of People to KEEP OUT OF L & D and Maternity” to give to hospital staff so that you won’t have to be the bad guy to family that you don’t want there!”

“Reasonable Expectations of Success and Mistakes: your child isn’t an extension of you”

“When Friends, Family, and Strangers Offer ‘Well Meaning’ Parenting Advice: Smile and Nod, and other non-violent methods”

“OMG My Teenagers Are Trying to Make Me Go Gray Overnight! and other things parents of three teens have been heard saying”

“Organic and Homemade! the story of the crunchy mom, whose baby ate only organic until he tasted his first Twinkie and realized there was an entire aisle of the supermarket his mom had been hiding from him, and other stories of perfect parenting gone awry”

“How Not to Say the Wrong Thing to My Teens and Make Them Cry, the story of the mom with three daughters, so really you have to know that there probably won’t be a happy ending to this story”

 

 

Yup… I’d have bought those.

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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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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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Did you know that people choose their candidates in very similar ways? We do. We all think that we have a system, the best system, and we’re so eager to share it so that others can try out our system and we just KNOW that if they use our system they’ll vote the way we vote. They’ll choose Our Gal/Guy.

It turns out that My Way is a very typical way to choose a candidate:

I think it’s important to learn about the candidates platforms and policies; think about the individual’s histories and how they treat their friends, spouses, and coworkers; consider how they treat individuals they dislike and are in competition with; look at their experience and voting history; examine employment/employer history in tandem with leadership skills; examine their skills in how they choose their advisers and their decision making process; weigh personal character; fact check them with reputable, unbiased sources, whose job is not entertainment but to inform with truth in order to educate.

We need to do all of this with ALL of the candidates, with the knowledge that with candidates we may have disliked or even “hated” in the past may actually be candidates that line up more closely with what we believe in. I also believe we may need to go into this with the humility that previous dislike and hatred of an individual candidate could have been misplaced due to deceit copiously placed in news media by opposition over the years.

These are the things that I believe opinions should be formed from.

Even before all of that, I think we need to commit to something more important. We first ought to commit to learning about ourselves and what matters to us BEFORE we actually choose a candidate for office. How can we know who should stand for us if we don’t know what we stand for?What issues are important to you? How strongly do you feel about them? What do you think about issues that other people find extremely important? There are dozens of topics we think about and research for ourselves and in our candidates. For instance, what do you think about:

  • Medicaid
  • Income Tax Revision
  • Cost, Availability and Quality of Clean Water
  • Minimum Wage Laws, and increase in mimimum wage
  • Prescription Drugs and Specialty Drugs
  • Aging and elder issues
  • Pensions
  • Higher Education
  • Employee Compensation
  • Moving American Jobs Overseas
  • Freedom of the Press
  • Freedom of Speech on Government Land
  • Transportation Funding
  • Disability issues & Disability rights and Human Rights
  • Hospital funding and staffing
  • Fracking
  • GMO’s
  • Funding CHIP
  • School Testing
  • Common Core (yes, these are two different things; one is tests, one is teaching methods)
  • NASA
  • Stem Cell Research
  • Scientific Discoveries
  • Gun Control
  • Overcrowding in Prisons
  • Scientific research funding for curing diseases, disorders
  • Mental Health, Emotional Health, Physical Health Issues
  • Medical Insurance and what you would like ideally for yourself
  • Funding Social Service agencies that would save the state agencies millions of “your tax dollars”
  • Social Security
  • Privacy Laws
  • Immigration Law & Immigration History
  • Social Inclusion Laws
  • Emergency Disaster Preparedness (did you know there’s actually a Zombie Apocolypse Plan?)
  • Funding our state and national infrastructure (Highways, byways, streets, railways, bus-lines, etc) for repair work and new systems
  • Carbon Emissions
  • Cleaner and Less Expensive Energy Sources for Cars; more efficient and cleaner cars
  • Cleaner and Less Expensive Energy Sources for Home Heating and Cooling
  • Green Living Initiatives and Legislature; Not just “climate change” but the stuff that directly affects you every day such as the quality of the air you breath and the water you drink
  • Regulated food industry promoting healthy eating and living
  • Funding education, both primary and secondary
  • Relations with other countries
  • United Nations
  • Political Parties working across the aisle
  • Gender Equality
  • Marriage Equality
  • Human Rights, Equal Rights, Civil Rights
  • Section 8 Housing
  • Public Housing
  • Unemployment Benefits
  • SNAP Benefits
  • Medicaid
  • Medicare
  • The right for anyone to eat, drink, and have a roof over their heads
  • What constitutes war crimes
  • The Draft
  • GI Bill
  • Weapons of Mass Destruction
  • Terrorism
  • Profiling
  • Torture
  • Homeland Security
  • Racial Politics
  • Free Trade
  • Homeschooling
  • Military and Defense
  • Abstinence Only Education
  • Women’s Health Protection
  • Maintaining the Freedom of Choice Acts (FOCA) (only 7 states have codified a woman’s right to choose, making the protections of Roe v. Wade part of state law: CA, CT, HI, ME, MD, NV, WA)
  • Freedom of Religion, to practice as you choose in the religion you choose
  • Freedom from Religion, to be able to choose to refrain from practicing any religion at all
  • Freedom to choose your own healthcare, doctors, hospital, clinic, services without interference
  • Freedom to parent your children regardless of disability whether physical or mental health
  • Defunding of social services and human services that would help disabled, women and children, elderly, and veterans
  • Police Brutality
  • Mandatory Minimum Sentences
  • Corporal Punishment and the Death Penalty
  • School Prayer
  • Separation of Church and State
  • Intelligent Design
  • Pardons in the Court System
  • Judge Appointments

Honestly, right now my head is swimming, yet I know there are dozens upon dozens more topics and subtopics to consider.

Things that we don’t really consciously consider when choosing a candidate can be unorthodox, for lack of a better word, and aren’t helpful at all. In fact, people end up voting against their own best interests if they use the below “methods” to vote with. They do it because they’re not really voting issues, platforms, policy, or even history.

  • The pleasantness of a candidate’s face
  • The pleasantness and pitch of a candidate’s voice
  • The taller candidate tends to win
  • Personal charisma
  • A nice smile
  • The appearance of being kind
  • The appearance of caring about doing their job well
  • The appearance of caring about their constituents in general as well as the people who are immediately in front of them
  • The appearance being a peace-keeping, even tempered individual
  • The appearance of being competent, educated, qualified, and capable
  • Individuals who behave and appear Presidential
  • The appearance of truthfulness and trustworthiness
  • A calm and even temperament

There are worse methods than this, I suppose. I’ve actually heard people explain that they use these methods in choosing candidates:

  • Mix it up a bit locally. We may not know who the candidates are, or exactly what their platforms are, but we vote a mix of Republican and Democrat to shake it up and we can try to make sure to “keep them in check” and keep things even
  • We play Eenie-Meenie-Mynie-Moe and we catch that mousie by the toe
  • We close our eyes while in the polling booth and click like mad at the little levers and then just yank that huge one or, if you’re back in the stone age like some towns, you close your eyes while filling in dots on what looks like a multiple choice test sheet
  • We pray right up until it’s time to choose and listen for God to whisper in our ear
  • Our minds are already made up, it’s easy peasy, because it’s made for us: we vote party line
  • The Candidate who “wins” the debate based on how many insults they can hurl
  • The Candidate who seems strongest based on their willingness to sling mud

Those particular methods don’t work, and to be honest they’re insulting.

And yes, to get a bit personal:

Can I help it if it matters to me when a candidate tries to impress people with his business savvy and know-how and insists he’ll get the nation out of debt in no time at all when in fact he’s declared bankruptcy four times and every single venture he’s ever attempted has failed? Every. Single. One.

It matters to me when he is not only proud to be a bigot and racist, but he plans to legislate bigotry and racism.

It matters to me when he has absolutely no education of value at all (since the education he does have hasn’t worked for him), doesn’t have a mind to hire advisers to help educate him as he believes he’s his own best adviser, and doesn’t know the first thing about U.S. or domestic history.

It matters when he doesn’t care about education of others, or about science, or the state of the world or its ecology.

It matters when the most benign emotions he elicits from his supporters is apathy, but the most frequent and dangerous emotion is rage and as it happens, rage is the emotion that he uses the most in order to attempt to gain supporters by twisting them up with fear of Other.

It matters to me when he is anti-disability, anti-women, anti-non-rich-non-white, anti-government and anti-American in every single word and action, anti-education, anti-generosity, anti-kindness, anti-human rights, and has a very tenuous relationship with the truth including his own documented history.

It matters to me that he’s anti-vaccination and believes Autism is a disease that is caused by vaccines; and that Autism needs to be eradicated.

It matters to me when he beat his ex-wife and then intimidates her to drop the charge and lie to the press; calls women disgusting names; bullies reporters for asking typical questions thinking they’re “too tough for any reasonable candidate;” says he’s going to prosecute every single person who says anything negative about him at all during the campaign once the campaign is over, even if he’s President; is anti-American military especially those who are disabled and/or are MIA or captured; makes fun of disabled people; lies about his personal connections to the KKK.

This is a man that has widened the fracture in America, and other countries in the world as as terrified as the majority of Actual Republicans (conservative or middle of the road or liberal-ish) and All Democrats (liberal or conservative). In fact they’re even more terrified because they see him with a clearer lens than we do. It turns out that the horror we’re feeling isn’t quite turned up  high enough.

This matters. People can claim that President Obama is responsible for the current fracture, and that may be partially so except for the fact that it’s because he hasn’t allowed himself or the Democratic Party to be bullied as much as the Republican Party has tried to bully over the past eight years. And I’m thinking that in the state the Republican Party is in right now, they’re wishing they had their own Barack Obama right now.

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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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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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