Archive for the ‘Oppositional Defiant Disorder’ 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.

#AutismSpeaksSilencesAutisticVoices

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I’m going to start right out of the gate admitting that I realize there are probably hundreds of blogs addressing displeasure, calamities, and reasons for and against DST.

I’m not those blogs. 🙂

I know it’s a struggle for households that don’t have children, and households that don’t have children or adults with any sort of disabilities or neuro-diversities.

We’re not those households. 🙂

I could talk about the fact that during the week after Daylight Savings Time kicks back in and we’re forced to move our clocks ahead an hour on that predetermined agreed upon day, are the most car accidents and fatalities. People are late to work that entire week. It takes a week or two for most people to get their sleep cycles adjusted because it may seem like a simple one hour change, but we’re actually shifting our entire day to accommodate this change. We’re losing more than an hour of sleep.

I could do more than mention them and go into lots of detail, but I won’t. I’m too tired.

In a household where there’s someone with physical disabilities (me) and someone with neurological diversity (two teens) there’s far more involved. As small children and through elementary school we would try to prepare by adjusting bedtimes two weeks prior to DST. We’d try to adjust meals as well. Slowly, but surely we’d try to adjust the routine and schedule.

It didn’t matter. We end up dealing with a minimum of two weeks of tragic drama, and with Sweet Girl it’s gone as long as six weeks. With Dear Girl she usually adjusts within the two weeks, but it’s a tough two weeks. Youngest, Darling Girl goes with the punches.

This year, it’s only been five days in and I’m wrecked. My five hour work day should feel like it’s over earlier in the day, but it feels longer, and so I hit my wall earlier than usual. I’m up earlier than usual this week, that’s what my body is saying. I get home and if I don’t prepare supper early to heat up later, I know I won’t be able to from the pain or chronic fatigue. Already this week I’ve had days where I had to go straight upstairs to have a good lay-down.

Sweet Girl’s already-difficult time due to needing a break from school (our town skipped February vacation and they have to wait for April this year) has just been exacerbated. Mornings are already difficult, so ultra-creative motivations and soothings are in order. I just feel terrible because some days I have to simply get Completely Parental and use my I’m Serious Because I’m Your Mom Voice. 😦  Prior to coffee sometimes. Sometimes I’m so tired and grumpy right along with her that I actually forget to make my coffee.

Dear Girl informed me on Monday or Tuesday that I need to get to The Guy Responsible For DST prior to having my early-morning coffee while still in my prior-to-early-morning-coffee-mood and Have A Talk with him. I wouldn’t be making any friends. But he WOULD stop fucking around with time changes.

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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 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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A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

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