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Book Reviews, Disability Justice, Down syndrome, Parenting

Book Review: Not Always Happy by Kari Wagner-Peck

I have been meaning to post a review for Not Always Happy, An Unusual Parenting Journey, by Kari Wagner-Peck for a few months now. I read it in two sittings back in late May, just before my newest child came earthside. It’s probably for the best that it took me so long, as I have since had lots of time to think about it and discuss it with friends who have also read it. I am going to refer to KWP as ‘Kari’ throughout because we are friends on social media and it would be weird to refer to her as ‘Wagner-Peck’– I tried it, it was weird, I edited it. Warning: I personally like to know what I’m getting into and appreciate spoilers. If you do not, beware, as there are spoilers ahead!

Not Always Happy reads in the style of Kari’s blog, A Typical Son, which I do not keep up with regularly, but I do read whenever I am reminded of a new post. It’s like sitting over a cup of coffee with a mom friend and letting her narrate the story of her life without interrupting, parenthetical jabs at villains and all. It’s a smooth and easy to read story telling, making it a very accessible read in a number of ways. Kari creates colorful characters of the people in her life, but the most vibrant character is her son, Thorin. Her blunt and honest portrayal of her own emotional process, from fostering to adopting Thorin, then again as he transitions from Early Intervention to school and from school to unschool creates an intimacy between her and her reader– I was compelled to send a message to her in the middle of the night to thank her for a passage that left me in tears. Just as she sees her son, so I see mine, in a world where no one seems to get it, even other parents of children with Down syndrome sometimes.

As Kari writes about the process of fostering a child (Thorin) who is not yet up for adoption because of a hearing postponement, with the desire and plan to adopt him, she opens up about her somewhat secret wish that family reunification won’t work in his case. I’ll be honest, it was uncomfortable for me to read and process this because I feel very strongly that the focus of fostering should be to support family reunification whenever possible. Kari acknowledges this in the book as well. Mothers who have survived or are surviving abuse, are lacking mental health supports, mothers who are disabled, mothers living in poverty– these are the mothers who are too often revictimized by family courts and social workers, and their children suffer too. My heart wrenched for Kari and her husband, Ward, as much as it did for Thorin’s biological mother, even understanding that a terrible failure in parenting led Thorin to be placed in protective care. As ever, it was most likely a series of failures, some that his biological mother was the victim of, and some she perpetrated. It’s never simple, so I went ahead and felt all the different ways a person could to make sure I covered the bases. I already knew the end of the story– that Thorin is a thriving kid living a great life with parents who truly seem to understand him, but it did not stop me from feeling suspense at the constant uncertainty they faced.

As I sat on the edge of my glider feeling suspense about the adoption, my stomach twisted thinking of Thorin’s biological mom. Has she read this book? Will she? Will her heart break? Will she fall in love with him in a new way through Kari’s eyes? Will she resent or feel ashamed at the story being told? How will this notoriety affect her? What is her story? When Thorin reads this book, how will he think of his biological mother? I am thankful that the most vulnerable parts of this story are kept from me. They are Thorin’s to tell, or not, in his own time and way, and I’m glad Kari believes that too. There is a discomfort in not knowing the details, but I think it was handled as best it possibly could.

As I read about Kari falling in love with Thorin, I connected deeply to the anecdotes she shared, from bath time to eating snacks in the grocery store together. I have always felt that as a mother I am in a constant state of falling in love with my children and the seemingly new people they are as they hit each new stage of development. I did not expect that experience to so seamlessly blend with Kari’s descriptions of falling in love with toddler-Thorin for the first time, but it did, perhaps especially because my son with Down syndrome was the same age in real time as Thorin was in the beginning of the book, and they share a number of charming characteristics. For weeks after reading, each time my son answered me with a definitive “yiss,” I heard imaginary toddler-Thorin in my head affirm, “yessith!”

A superpower I have developed since my first son was born, is the ability to read the faces of people we pass on the street and determine whether or not I hate them based on their reaction to seeing his face. The handful of times I have been in public without him, I have searched the faces of passers by just as intently, and found that the reactions he and I get are dramatically different than those I get when I am alone, with my teenage daughter, or with my other son who does not have Down syndrome. I feel vindicated that my excursions without him prove I’m not imagining it, but also heartbroken. In Not Always Happy, Kari writes, “I knew it had to do with Down syndrome somehow because in our short time with Thorin most things people did that were rude or offensive had to do with Down syndrome.” Yes. Add to the list the weird and awkward things people do as well. As Kari describes her early experiences with people’s strange ideas and outright discrimination, I nodded along, having shared similar experiences, thankful for the validation.

One of the coolest characters Kari introduces is Jade, Thorin’s fiercely protective older sister who is also living in foster care. Jade has the cynicism of a hardened New Yorker, and the fearlessness of someone who has already walked through the fire. Jade tells Kari she often gets called brave by adults when they hear how she went on her own to find help for herself and her baby brother; her courage in demanding quality care from adults for Thorin is even more impressive. She maintains a presence in his life and doesn’t hold back when it comes to his well-being. Jade has so many of the characteristics I love in my own children, and ones I hope they are able to learn without walking through the fire too. I love the way Kari writes about her with the respect she deserves and has earned. It’s one of the many ways the respect she has for children shines in her writing.

The majority of the book is dedicated to the trials and tribulations of navigating Early Intervention (EI) and transitioning into public schooling. Their story is so familiar I think I might have been able to guess many of the brick walls they’d hit along the way, and yet the storytelling is fresh and compelling. From the outset of their journey as new parents, Kari and Ward find that they expect Thorin to receive what he needs and be treated as, you know, a regular person, but every person they interact with in the different systems disabled children are shuffled through patronizingly shuts them down. In EI they are in a fight from the get-go for services that will help Thorin in preschool, such as physical therapy; once he is in preschool, they are in an uphill battle with an outdated, exclusionary, and prejudiced structure– not to mention therapists and teachers who range from overly “helpful” to downright abusive. I am navigating these systems myself, and seeing further evidence that the problems my family and I face are everywhere is both vindicating and enraging. Kari’s style of writing interjects much needed derisive humor– I hope to channel her as my inner voice the next time I’m sitting in an IEP or 504 meeting.

As Thorin moves into public school he is fighting for his place and his parents are alongside him fighting every which way for him to be treated as equal to his peers and given the supports needed to do well. Again, this story will be predictable to parents of disabled kids who have tried to work within the public school system. Kari stops at nothing to advocate for Thorin. She takes risks I find relatable, unafraid to send what I sometimes refer to as the “bad idea email.” It’s the one that goes out in the middle of the night when all your feelings are stewing together in a mish mash of fear, anger, frustration, powerlessness, and a fierce protectiveness. Ultimately, Kari and Ward choose to leave the public school system and transition to unschooling (my personal favorite style of homeschooling)

I already knew the end there, too, because I came to know of Not Always Happy by reading Kari’s media contributions, social media, and blog posts after Thorin had begun unschooling. I wish she had spent more time writing about unschooling and their experience of it, as I think parents of children with Down syndrome who are as fierce as she and I might be afraid of it and feel that it is a disservice. In reality, I think unschooling has the potential to foster immense creativity, knowledge, and especially autonomy, something disabled children are so often robbed of, starting in EI and compounding through school. I love seeing snippets of what unschooling looks like in their family, and I think it would be worth sharing with a wider audience.

My biggest concerns, as ever, with writing about disabled children have to do with their privacy, dignity, and right to tell their own story. I can be very critical of the way people choose to share about their lives raising a disabled child or children. At a minimum, I believe parents should write in such a way that when their children are grown, they will read it and feel tremendously loved, respected, and valued. They should look at our body of work and feel proud of what we have done. I recently wrote a draft of a chapter for the book I am working on that advocates, amongst other things, waiting to share stories publicly until our children are adults and can be a part of the process in a more directive way. Just because a 10 year says it’s okay to share an anecdote doesn’t mean that same kid won’t be mortified people know it in 5 more years. Sharing our children’s stories comes with great responsibility. In sharing their stories, people they have never met feel a sense of intimacy with them. What are the repercussions of that?

I came to this book already respecting Kari a quite a bit for the way she writes about Thorin and their lives together. I think she really toes the line of giving her reader access to their family and protecting Thorin’s story, (although he may disagree about the potty training bit in a few years). What is striking and notable about both the book and her other writing, is that it is clear that she has a deep understanding of and respect for Thorin as a person. She sees him when others don’t. I expect that when he is grown he will read these words and feel affirmed, he will feel her love and confidence in him rather than feel embarrassment or that he has been a burden.

The most important thing this book does is give a template to parents of children with Down syndrome, or any disability really, to truly see their child, and see them as equal. It’s a huge gift she is handing to us in her writing, and I believe it is worth the risks she takes to tell these stories intimately and urgently. I cannot impress enough how powerful this aspect of the book is. Further, it can help people who don’t have a close relationship with anyone who has Down syndrome have a chance to look through that lens themselves.

Don’t mistake this for your run-of-the-mill mommy blog monetizer or yet another story of an angel martyr mother to a burdensome disabled child. Not Always Happy is a beautiful act of solidarity with other parents and their children with Down syndrome, and a powerful work of advocacy. 

Autism, Disability Justice

We Need to Start Recognizing Ableism as the Serious Issue It Is|Guest Post

Guest post by Persephone Smith-Donohoe, 14 year old disability advocate, musician, martial artist, dancer, and big sister. This essay was originally written as an 8th grade assignment and was voted Best Presentation by Persephone’s classmates and went on to become an inspiring speech presented to students and teachers.

     On November 3rd, 2014, Jillian McCabe took her 6 year old son, London, to get ice cream. After, she took him to the middle of the Yaquina Bay Bridge. She picked him up, then put him back down again. Then, she picked him back up, said “sorry,” and threw him over the bridge. She walked back to her car, called 911 and admitted to killing London. Journal entries conclude that she had been planning the murder for weeks. The reason she did it: because she felt burdened by having to take care of an autistic child. Many people defended  her saying “well she was put under so much stress taking care of a child with ‘special needs.’” September 20th, 2016, North Carolina, Keith Lamont Scott was a black disabled man who was sitting in his car, reading while waiting for his son to come home when he was shot and killed by the police. The officer who shot him faced no charges. Joseph Nathaniel Weber was a non-speaking autistic man who was confused and scared as he tried to find protection in a home for disabled people when he was shot and killed by Kansas police on sight. Mitchell Wilson, age 11, was bullied for having muscular dystrophy to the point where he suffocated himself to death. Disabled people’s lives are not valued in our society. Many parents have beaten and murdered their children for the sole reason that they are disabled. And nearly half of the people killed by the police in the U.S. are disabled. Disabled people are constantly persecuted and discriminated against every day. Our history is filled with the bloodshed of our disabled ancestors. Their stories of oppression and mistreatment have been overlooked and ignored. Our everyday language is packed with slurs against people with disabilities, and the media continues to perpetuate it. We need to start recognizing ableism as the serious issue that it is.

Ableism is not a new or uncommon thing. It has been happening throughout all of history, but still we overlook the suffering of disabled people. Just by living in 2017, you probably know at least a little bit about racism, sexism, homophobia, and other oppressed minorities, but the majority of people have never even heard of ableism. Ableism is the discrimination against disabled people and though it’s overwhelmingly common, it goes unrecognized constantly. More than 7 out of 10 people with disabilities report being abused and yet still people pretend like it doesn’t exist. Disabled people aren’t getting support or help because we aren’t giving them the safe space to do so. Because when they do speak out, we shut them down and belittle them. But they’re probably just making it up or exaggerating because they’re ¨retarded,¨ right? During the Holocaust, Hitler made the T4 program which made it so that people with disabilities would be murdered because he wanted the “master race.” The T4 program ended up killing approximately 275,000 people with disabilities. This program was inspired by the American Eugenics Movement, which had the same idea of killing disabled people to “eliminate” any traits they perceived as “negative” from the human race. Even now scientists are trying to make technology to “fix” disabilities before the child is even born. Businesses are legally allowed to pay their disabled employees just pennies an hour and Goodwill takes advantage of this law all of the time. We can’t keep our backs turned to this injustice anymore. The longer we continue to ignore and silence the disabled community, the worse ableism will become, and the more innocent people will be harmed and killed.

Throughout this history, our language has become loaded with derogatory words and phrases that target disabled people. The English language has hundreds of ableist slurs that are used every day by ignorant people who know nothing of the harm they are inflicting on the disabled community. When people find out that their words are discriminatory, they are defensive and continue to say the words after they know its true meaning. Because of this, many disabled people are hurt for trying to stand up to oppression.  A lot of the word’s meanings have changed as well, which leads people to believe it’s okay to use them as slurs. It’s not. “Mental retardation” used to be considered the preferred term when referring to intellectual disabilities. The term translates from Latin to  “slow,” so it was used in the medical field to mean that the disabled person would meet their milestones at a slower pace. However, this word stopped being the medical term when people started using it as a slur. Similarly to the R-word, words like dumb and lame were used differently as well. Dumb means unable to speak and lame means unable to walk. Individuals with Down syndrome, a genetic difference caused by the appearance of a third 21st chromosome, would be diagnosed as a “Mongoloid Idiots.” “Duh” was used to mock the way people with low muscle tone talk. Words like “imbecile,” “moron,” “spaz,” “derp,” “cretin,” and “feeble-minded” have similar histories.  By using these words casually, it diminishes its history and causes pain to those around you who might have been or known someone who would have been considered “mentally retarded” or any of the other words listed.

The media is also to blame for the widespread acceptance of ableism. Many media outlets perpetuate ableism by using ableist language, turning disabled people into comedy and using disabled people as inspiration or plot devices. Most TV shows and movies have that one character that’s a little different from the others and generally the butt of many jokes. Some examples are Patrick from Spongebob, Stimpy from Ren and Stimpy, Karen from mean girls, and many other characters portrayed as “stupid” for comedic effect. Some characters have specific disabilities are made fun of throughout the film for entertainment. Take Gerald the seal from Finding Dory as an example. Then there are the characters that have physical disabilities who are “overcoming” or are turned into villains with a grudge against the person who caused their disability. Many TV shows and movies do a good job portraying disabled characters, but then use them as a plot device to help the main character grow and have no relevance after that. Nearly all movies and TV shows use ableist language as well. Legally Blond, Clueless, That 70s Show, The Wolf of Wall Street, and many more all use the R-word in negative ways. Even in the news, disabled people are almost always used as inspiration or as the object of pity. When people are constantly exposed to this type of discrimination, it’s hard not to adapt to it and start using the same language and laughing when someone does something “stupid.” Society has etched into our brains that being smart is good and being “stupid” is bad. That our IQ determines our self-worth. But being able to recreate patterns with blocks and do a certain amount of math problems in 30 minutes doesn’t say anything about your creativity, your ability to empathize, or your determination in things you love. We need to get rid of this ridiculous idea that not being society’s version of “smart” makes you a less deserving of a happy life. The next time you laugh because someone does something you perceive as “stupid,” ask yourself, “why do I find this funny? Is this idea rooted from society’s ableists beliefs?” And the next time you call someone “stupid” think to yourself “why is it a bad thing to not meet society’s expectation of intellect?” I challenge you to change your mindset and ideology around what it means to be “smart” or “stupid.” We can’t continue to let the media control the way we perceive disability.

Ableism is a very real, very serious issue that needs more recognition. Disabled people are mocked, beaten, and murdered every day. The list of disabled people killed by their parents and caregivers in the past 10 years is so long, it would take nearly 45 minutes to say all of their names. Not only have parents betrayed and hurt their children, but police brutality has taken many disabled lives as well. Our society has trained us to believe this is okay. Our language has given us the weapons to inflict pain upon the disabled community. Our history is haunted by the cries of disabled children who have been left in the streets to die. We can’t just sit and watch this discrimination anymore. We need to stand with the disabled people in our communities. The current events in America are scary for all oppressed groups, including disabled people. Our new president does not care about the rights of disabled people. He will not try to protect their rights and he will not try to protect their lives. We can’t let our government steal the rights of our friends and family with disabilities. We must take a stand against the oppression and bigotry disabled people are subjected to day after day. We must work to grow as a society that’s accepting of all people! All races, all genders, all religions, all sexualities and all abilities! And we must never fail to recognize the pain of another oppressed group again!

 

Works Cited

“Ableism/Language.” Autistic Hoya. N.p., n.d. Web. 08 Mar. 2017.

Agorist, Matt. “Cops Kill Speech Impaired Autistic Man Trying to Find Safety in Home for People with Disabilities.” The Free Thought Project. The Free Thought Project, 24 Aug. 2016. Web. 9 Mar. 2017.

“Crime Against Persons with Disabilities, 2009-2012.” Bureau of Justice Statistics (BJS). N.p., n.d.      Web. 08 Mar. 2017.

Everton Bailey Jr. | The Oregonian/OregonLive. “‘Sorry,’ Mom Said as She Threw Son off Oregon Bridge after Weeks of Planning His Death.” OregonLive.com. N.p., 23 Feb. 2016. Web. 08 Mar. 2017.

O’Hara, Mary. “Up to Half of People Killed by US Police Are Disabled.” Mary O’Hara: Lesson from America. Guardian News and Media, 29 Mar. 2016. Web. 08 Mar. 2017.

“People with Disabilities.” United States Holocaust Memorial Museum. United States Holocaust Memorial Museum, n.d. Web. 08 Mar. 2017.

“Retard.” Dictionary.com. Dictionary.com, n.d. Web. 08 Mar. 2017.

“Survey Finds Disability Abuse Widespread.” Disability Scoop. N.p., 10 Sept. 2013. Web. 01 Mar. 2017.

 

Autism, Parenting

Is My Baby or Toddler Autistic?

[Note: I will use identity first language throughout this post. For more information on identity first language versus person first language, particularly as it relates to autistic people, please check out  these two posts on Autistic Hoya.]

Some parents of babies and toddlers may notice that their little one seems like they’re operating at a different frequency than the other kids at the playgroup, or they may have flagged a couple of questions in a developmental questionnaire at the pediatrician’s office, but they don’t know where to begin looking for information. A simple google search leads to articles like “Early Warning Signs Your Child Has Autism” and it feels dangerous, perhaps alarming. When you look at your perfect little baby who you love, you only want good things for them; you only want to think good thoughts about them. Yet all that seems to exist for exploring ideas about their neurology is article after article warning you that your perfect little kiddo may have something wrong with them that requires immediate intervention to give them a chance in life. Phew! Deep breath.

Autism, at its core, involves differences at the neurological level that affect sensory experience, communication style, and information processing. These things can affect executive functioning. Much of the framing around signs a baby or toddler may be autistic is about how the parent experiences what their child does. None of it encourages a parent to look deeper into their child’s experience. What’s worse, none of it comes from a loving or accepting place.

Many parents considering whether or not their toddler is autistic may be interested in approaching the question with love and acceptance for who their child is and what their experience of the world is, but there’s not much out there for them to connect with or learn from. I’ve attempted to take the clinical screening questions along with other information and turn the language and ideas on their head a bit, so that they reflect an empathetic view of the child’s experience, and offer an accepting re-framing around pathologizing, clinical language and concepts. In the writing of this piece, I have sought feedback and input from autistic parents of autistic children*– one of the best resources around for connecting the outward behavior of young autistic children with their unique experience of the world and autistic identity.

This is by no means an exhaustive or definitive list. Autistic children are children, and they’re all unique individuals. They may have some of these characteristics but not others; they may be completely opposite in some cases! That’s to be expected.
Here are some differences parents may notice about their baby or toddler who is autistic based on clinical screening guidelines for babies and toddlers**:

-You may notice that your child doesn’t communicate as you expected or the way you see other children their age communicating. Where other children point to things to express interest or desire, your child may not show you as explicitly. When you call their name or give a simple direction, they might not respond at all, or they might give you half a glance and return their interest to where it was before. Many autistic babies and toddlers do respond to their name and simple directions at least some of the time if not all. 

If your child is doing these things, it may be because they are taking in so much information from the world around them that it’s difficult to prioritize what you’re asking them to prioritize– paying attention to you! They may be learning about what the texture of their clothes feels like, where the light from the window goes, what sound the neighbor’s dog makes, what the diaper pail smells like, what your voice sounds like, and what that leftover chunk of banana in their cheek tastes like all at the same time. Your child may be remembering and working through all they learned in play earlier that day and be extremely focused on categorizing or analyzing that information. All those things may feel as big and important as any other, and sifting through all of them to get to your request is a lot to ask. Your child may also be experiencing thought tendrils (see Tendril Theory by Erin Human) and not be prepared to interrupt their current thought process and transition to another just yet.

-You may notice that your young child is very interested in visual things like light, ceiling fans, dust floating near a sunny window, or they may use their hands to make movements that they watch. This is known in the autistic community as visual stimming, and is a way that autistic children (and at times all children, because everyone stims) seek out positive sensory information to focus on as a form of self-regulation. “Stimming” is a way of bringing about sensory input. For an autistic child who is experiencing an onslaught of sensory information that may be overwhelming, finding a pleasant sensation to focus on can be soothing. A bonus to visual stimming is that it is great for fine motor skill development in the eyes, which is particularly important in learning to read.

-You may notice that your child has unique physical movements, such as rocking when they sit, twisting around when they stand, or they may flap their hands when they are experiencing delight (and sometimes when they are sad, too). Your child may enjoy the vestibular input of being pushed on a swing or spinning around even more than the other children you see. This is another aspect of seeking positive sensory input. There’s nothing wrong with these movements, although because they look different than the movements of other kids sometimes parents want to intervene to make them stop. Allowing children the freedom to move their bodies is a basic aspect of respect for their bodily autonomy, and an important part of teaching them body boundaries to keep themselves safe. If your child has unique or stereotyped movements, they have found great coping skills for being in their environment– this is a good thing! Accepting your child as they are means accepting the way they move through the world. Plus, pushing your child on the swing is a really fun past time, and makes for great Instagram photos.

-You may notice that your toddler doesn’t seem quite as interested in other toddlers and young children. They may take a lot of time watching others play before they join in, or they may not join in at all. Your toddler may show interest by spending a lot of time looking, but not much time, if any, engaging directly with other children. Autistic people interact socially in a different way than their non-autistic peers. Your child may be observing in order to try to learn the social language of their peers who do not have the same way of communicating and interacting as they do. A cautious approach feels safer. This doesn’t mean they are “stuck inside” themselves or have a social “deficit,” it means they are trying to learn about how others interact before sticking their neck out. Studies and the expressed experiences of autistic people confirm that autistic folks read each other’s cues better than they read the cues of allistic, or non-autistic, people. Having autistic friends of all ages will be a really beneficial aspect of your child’s social development if they are indeed autistic.

Your child may not use your facial expressions as social cues because they haven’t interpreted what all of them mean yet.

There is an erroneous but widespread belief that autistic children are withdrawn, “zoned out,” and disconnected from other people, that they are not communicating and that these things are deficits. The reality is that autistic children are especially engaged in the world and in things around them. They are passionate and focused as they collect information. The deficit is in the way allistic people interpret their focus and communication. A part of raising an autistic child is learning about what their experience is and how they communicate it. If you watch and listen closely, perhaps mimicking your autistic child’s intense focus on collecting information and analyzing it, you will see that autistic children are very expressive in their own way, and can be remarkable at setting and expressing boundaries, and those boundaries will assist you in parenting and in protecting them from outside harm.

-You may notice your baby or toddler does not make eye contact, or does not like prolonged eye contact. This comes up first on most lists. Allistic people and developmental pediatricians have their own special interest in eye contact! For most people, eye contact is a form of communication and intimacy that is a standard aspect of interaction. For autistic people, it can be incredibly intense, even painful, to engage in or prolong eye contact. This is not a sign that a child is not engaged, or that they cannot be emotionally intimate– it’s a sign that they are experiencing many things at once, including lots of emotion, probably lots of emotional connection as well, and that adding your intense gaze is overwhelming. Some of what they might be processing all at once: the entire sensory profile of the room (sounds, visual stimulus, smells, textures), your voice, your words, your body language, interpreting what all those things mean, trying to remember if there is a specific way they are supposed to respond to those things, and more. Eye contact is one more thing to process, and can also feel like scrutiny. It can be so distracting that it’s difficult to know what the next “correct” social move is supposed to be.

Plenty of autistic children do make eye contact or learn that there is a social reward for approximating eye contact, like looking at people’s eyebrows. Autistic children may make eye contact with their parents and siblings only, but not with others. Many children have had their diagnosis delayed or rejected based on the idea that autistic people never make eye contact or look into people’s faces. This is another way the stigma and stereotypes of autism can be harmful to autistic children– by denying them access to their autistic identity and supports based on stereotypes.

Communication looks different for autistic people, and that can mean that other ways of communicating besides speech are better for your child. It can also mean that from an early age an autistic child speaks with fervor and gusto about their favorite subjects.

Some of the things you may notice about your baby or toddler if they are autistic that are not always a part of early clinical screenings, are:

-You may notice -You may notice that your child is not particularly interested in bringing you things to show you, or getting your attention to watch them as they try new things, while other kids their age may be doing that. Autistic children are taking in lots of information and processing it. They may be a little too busy or preoccupied to bring it to your attention. They may also assume you already know or are doing the same thing because to them it is so obvious. What’s obvious to you may not be obvious to an autistic person and vice versa. This does not mean your child does not want you to engage with their interests and activities! If your child isn’t using your way of communicating to show you what they’re working on, you can try using their language to show them you are interested nonetheless. One way of doing that (that is appropriate for all toddlers regardless of neurology,) is to put yourself near them and engage in a similar style of play. If they are coloring, quietly color your own picture nearby. If they are lining up cars, sit across from them and line up blocks in a similar pattern. You may find that they will use this space to communicate a lot about what they are learning and interested in, just not in the way you might have expected.

-You may notice that your child is very sensitive to noises that may seem commonplace to you. Autistic people can experience sensory stimulus in a much more intense way than non-autistic people do. This can mean that what feels like 40 decibels to you feels like 140 decibels to them. Imagine trying to carry on a conversation and learn in a room with a jet engine going. You’d probably get pretty cranky and overwhelmed in short order. Whatever your child’s reaction to noise– it is reasonable– the experience they have of sound is very real, and not something they can just “get over.” Many young children are sensitive to noise, and it makes sense. The constant noise around us is a pretty modern phenomenon. Garbage trucks, dishwashers, blow dryers, beeping phones, background TVs, the neighbor’s constantly barking dog– none of us were evolved to have to filter out these noises all day, and autistic people filter and process sensory information differently, so this constant sound burden can take up a lot of coping skills.

-You may notice that your child’s gross motor development takes a little longer or that they walk a bit later than their peers or siblings did. This is not the case for plenty of autistic babies, but it may be for some. Babies and children organize their development in a compartmentalized way. Often times they focus on one area almost exclusively, ignoring other areas of development for awhile. For autistic children processing lots of information from the world around them and trying to observe and learn the behaviors of all the non-autistic people around them, some other skills may get put on the backburner for a little bit. Lots of opportunities for play and movement will give them the tools they need, and there is no reason to believe that the age at which a child walks has any predictive quality about any other aspect of their life.

-You may notice that your child’s speech development is unfolding differently than their peers. They may speak less or not at all. One rubric used is that a child is not using two-word phrases by 18 months. Often times delayed speech or having no speech has been so intensely focused on by doctors that precocious speech in autistic children is used to deny a diagnosis or make a long term assessment about an autistic child’s future. Precocious speech can also be a part of an autistic child’s repertoire, for example, using complete sentences in early toddlerhood. your child needs more time and warning than other children you observe to transition between activities. Some examples are diaper changes, leaving the park, ending play with a specific toy, leaving the house, and getting into the car seat. These things can be difficult for any little one. Your toddler may spend the first part of their day at preschool observing from a safe distance. If your child has a hard time transitioning between activities, plan extra time to support them, and give them lots of early notification that the activity will be changing– even if you don’t know if they understand you yet. This can mean an extra 5 or 10 minutes of playing around the car seat or playing with the buckles before it’s time to get into the seat and buckle it to leave, or setting one of more “warning” timers on leaving the park (10 minutes, 5 minutes, 1 minute, and so on). This goes back to Tendril Theory. Your child may be deeply engaged and quick changes are startling and dysregulating. Allow your child a chance to observe before joining into an activity. Observation is learning, it’s not a bad thing.

-You may notice that your toddler becomes intensely focused on a specific topic. The most stereotyped of all these interests is trains, of course! Who doesn’t love trains? But there are plenty of ways autistic toddlers become focused on specific subjects. They might be interested in or passionate about certain media characters, collecting specific objects like rocks or sticks (or anything, really), a specific way of playing, like stacking objects into towers, insects or animals, drawing the same subject, mixing colors, or anything else under the sun. A lot of times these interests are called “special interests,” and there can be a lot of pathologizing around them or comparisons to obsessive compulsive disorder.

What parents should know about special interests is that they are incredibly rewarding and therapeutic to autistic people. They bring joy and delight. When a non-autistic person learns a lot about a certain topic, they are considered an expert. While an autistic person may be an expert on their special interest, often they are called a “savant” or have their expertise treated as a symptom rather than a positive trait others can learn from. If your child expresses a passionate fervor for something, pay attention and learn about it with them. There is no better way to show them how much you love them and are excited to be their parent than to express a desire to learn from them about what they love to do. This may mean that if your autistic child uses speech to communicate that you listen to an hour of chatter about all the different types of trains or how a rhinoceros beetle uses its horn to flip a rival every day. Let your child share their delight with you! Try to be delighted with them!

-You may notice that your child develops a nervous habit around social interaction. A lot of adults have a really difficult time with the social behavior of respecting children’s boundaries. They get into little ones’ faces and ask questions and try to force a giggle. They may expect social reciprocity for hellos and goodbyes your child isn’t ready for yet. This can be overwhelming to any young child, and especially to autistic children. Some examples of nervous habits in response to social pressure are covering their face with their hands, turning away and burying their face in your shoulder, nose picking, playing with their hands, and attempting to run away. They may also set a stronger boundary, like putting out a hand to push someone away, yelling, or crying. While other adults may not perceive these as socially appropriate behaviors, setting a boundary on one’s space is a crucial skill and young children should always be supported in doing so, no matter their neurology and no matter how much Grandma clutches at her pearls.

-You may notice that your child melts down or has tantrums from an early age and particularly in certain situations, like going to the grocery store or family parties. The amount of sensory stimulus in places we take our young children can be overwhelming for any toddler, but it can be downright painful for autistic toddlers. Crowds of adult voices talking, fluorescent lights, ambient noises, repeated demands for social engagement, and lack of familiarity are some of the things that can just push a little one beyond their limits to cope and they may break down.

When a neurotypical adult is in a situation the average person finds to be extremely stressful or torturous, most people find that their emotional response is reasonable, even if it is crying, yelling, throwing things, hitting a wall, or pulling out their hair. When a child experiences things that have the same effect on them, we call their response “behavior” and try to forcibly stop it. Sensory overwhelm in a sensitive child is just as real as the torment adults can face in oppressive*** situations, and we should take it seriously. If your child melts down when they are overloaded, provide them with a safe place to release their feelings and reorganize their thoughts. This may mean sitting with them as they scream, cry, say they hate someone (maybe you), and move their body wildly. Give them as much safety as possible while restricting their movement as little as possible. Being a loving, calm, and accepting presence as your child processes intense feelings will only bring them closer to you in trust and love. It is not reinforcing a behavior or “giving in,” it is providing emotional stability and safety.

-You may notice that when your child takes on a new activity, like preschool, that their tolerance for other things, like food or clothing textures, is reduced. We all have a certain amount of bandwidth for each day to do all the things we need to do. For autistic children, a lot of that bandwidth is spent on sensory processing. When you add something new to your child’s workload, like lots of social interaction or physical play, they will have less energy to for sensory processing. Adding new things to their life may mean they need a break in other areas. Often times this means some foods they used to eat are rejected, or clothes they used to wear become too tight, scratchy, or stiff. These rejections make perfect sense, and you can help your child adjust to changes by being flexible about other areas of their life, like buying multiple set of their favorite comfy clothes, or taking selective eating in stride.

-You may notice that your baby or toddler has a unique “lovey,” or comfort object. All children may connect with a certain object as a source of comfort, such as a teddy bear or blanket. Sometimes autistic children pick less typical objects to tote around and find comfort in. They may not be soft and cuddly or represent animals or people, but they are just as important to your child’s security. Of all the unusual loveys I have ever heard of, my favorite was a rubber spatula: a useful tool for play, an object to chew on, and with an easy to grasp handle so it doesn’t slip away during naps! Perfect!

-You may notice that your toddler uses the lines from TV shows or movies rather than their own words. Or they may repeat the things you say back to you to convey the answers. For example, your child may ask, “Are you thirsty?” to tell you they would like some water. After all, it is what you say before you offer them water. This is not parroting, it is important and valuable communication. When an autistic person uses scripting, sometimes they are explaining a feeling or experience by using a different story they’ve heard to do so, because translating their experience into words is difficult. Listen closely for the feelings conveyed and the bones of the experience laid out. Don’t get caught up in the details of the script, which may or may not be a perfectly accurate description of what your child is trying to tell you. Scripting is a very useful tool that all people use to some extent or another. Often times autistic people use scripting in a more noticeable way, particularly in early childhood.

-You may notice that sometimes your child communicates with speech, and other times they do not. It is easy to assume that since they can talk sometimes, they should be able to do it all the time. That is not necessarily true for autistic people, who can lose speech for periods of time under stress, or have an up and down trend around speech development– for example using a word and then no longer using it. Look to all your child’s actions as a part of their communication. All communication is meaningful and valid, whether it is physical, behavioral, spoken, signed, gestured, sung, recited, or some other type. All children learn multitudes of ways to convey their needs, feelings, and ideas to their parents as they develop, but our culture tends to value speech above all else. Listen and observe your child as they show you all kinds of ways to communicate you may have forgotten since you were a child. Find the magic in it– it’s there.

-You may notice that your child has unique ways of playing with toys, such as lining them up in a row, sorting them by color, stacking them into towers, or otherwise organizing them instead of playing make-believe. This type of play is just as valid, meaningful, and important to learning as any other. A part of being autistic is sorting and processing information differently, and this is one aspect of that. Rather than assuming your child is doing something wrong, spend some time copying what they do to show them you are interested. They may show you a whole new set of criteria for sorting, categorizing, and making patterns that you had never considered before.

-You may notice that your baby or toddler does not like to be held as much as you would expect, or at all. Being held may be an overwhelming amount of sensory and social stimulus for them to process as they focus on their surroundings. Alternately, your baby or toddler may relax and calm down most when being held tightly or worn in a sling, because the gentle squeeze of pressure around their body gives a calming sensory input in an environment where they are overstimulated. Listen to your child’s cues about physical contact and honor them. Remember, it isn’t really about you and what you wish they wanted from you, it’s about meeting their needs for emotional and physical connection how they need to be met. When you do meet those needs, even if it isn’t how you expected, it will be rewarding for both of you.

-You may notice that your baby or toddler has a great eye for detail. They may notice things you didn’t, or respond to changes in their environment you wouldn’t think they’d notice. They might notice and play with the tiny string coming out of the seam of your pants while you hold them on your lap. Most kids notice things adults overlook, because so much is new to them and they have a different perspective at their size. Autistic children can often have an even more refined attention to detail than their peers. This is a really fun aspect of parenting an autistic child– seeing all the things you are missing through their eyes.

-You may notice that your toddler has a different perception of danger and safety, and needs more guidance around freedom to explore and strangers than you might have expected. This can mean your toddler makes friends with everyone at the park and would like to examine their picnic basket. It can also mean they explore without worrying how far they’ve gone, or what dangers may be in the area they are exploring. They may run further than is safe just to feel the breeze on their skin and the pounding of their feet in the grass. Your child is counting on you to gently help them learn what is safe and what is polite. Be patient with them and explain why you are setting a boundary every time.

-You may notice that your child makes unusual noises, perhaps in response to things, or perhaps absent-mindedly as they go about their business. This may be humming, blowing air, making popping or clicking noises with their mouth, repeating a word, phrase, or sound over and over again, squawking, copying an animal noise, or any number of interesting sounds. This is generally referred to as vocal stimming, or creating sensory input by making noise. This can be calming and regulating for autistic babies and toddlers, and it is a part of learning how to use their voice, as well. When autistic children create their own sensory input, it helps them process, filter, and ignore other sensory input they can’t control. Whenever possible, be supportive of this outlet. Your own sensory experience is important too, so try to find compromises that allow your child to stim and give your ears a rest often enough that you can remain patient. A huge part of parenting work is trying to figure how everyone’s needs can be met harmoniously– vocal stimming is a need.

Again, this is not an exhaustive or definitive list. If this sounds a lot like your child, you may be interested in finding out if they are autistic. Seeking a diagnosis is complicated, and there are pros and cons to when, where and how to seek a diagnosis that I hope to write about another day. I will say that autistic children know they are different, but without the naming and acceptance aspect of autistic identity, they may perceive themselves as consistently failing, or being somehow wrong in the world. This is a terrible feeling. Loving and accepting your child as they are is a foundation for their sense of self, whether they are autistic or not.

*of which I am also one
**adapted from the modified M-CHAT screen currently used as an initial clinical assessment tool to screen babies and toddlers for autism
***I used the word ‘oppressive’ here intentionally because an inaccessible environment that is causing pain to an autistic person is oppressive according to all the definitions of the word, however, I would point out that we do not require neurotypical adults to experience actual oppression to feel understanding or compassionate about their outbursts. 

Special thanks to Sonya Austin Emerick for consulting with me about overwhelm, communication, and for reminding me to mention how connected and passionate autistic toddlers truly are– and most of all for sharing her beautiful children’s lives with me.

Special thanks to Salem Leonard-Goosby for consulting with me on eye contact, communication, peer interaction, and for sharing tons of wonderful anecdotes about his children, who sound like very cool people.

Disability Justice, Down syndrome, Parenting

T21 and Competitive Parenting

I was a parent for close to 13 years before I remember experiencing the passive aggression of competitive parenting. I had my first child very young and had a handful of first-time mom friends who were also young. We had conflicts, of course, but I can’t remember us ever pitting our similarly aged children against each other. My daughter occasionally experienced a spontaneous math test or interrogation of what exactly we did all day when she was homeschooled, but never from our friends.

Once I had my second child and was introduced to the Down syndrome community, I knew that social relationships with other parents would be really different, and they are. We lost some old friends; we got closer to some old friends. We made lots of new friends. We now maintain friendships with folks whose politics and personal beliefs are far different from ours and those of our long time friends. We have ongoing friendships with people way outside our class demographics as well. These types of friendships often don’t last without some kind of a bond, and ours is that our families each have a member with Down syndrome. We may not be family to each other, but in a way, our kids are family to each other, and they have a bond we won’t ever know. It’s really great, and it’s really hard sometimes too!

I worry about navigating potentially awkward social situations with people more educated or monied than me or making an offhand remark that sparks a political discussion we are never going to agree on. I worry about having people over to my house and if it will be nice enough or if they’ll look down on us. I did not ever worry that anyone would try to put my kid up against theirs in a developmental competition, however, until those microaggressions began in my child’s first year. What really took me off guard, was that aside from one very strange cafe owner, that competition came from other parents in the Down syndrome community.

It doesn’t just happen to me, of course, I see it in online groups and among other parents. A parent of a child with T21 says something that their child is working on, and other parents respond simply by saying at what age their child picked up that skill– as if such a thing is relevant anyway, with no recognition or support for the success of the other child. Other times parents chime in with judgmental and even fear mongering advice about when to get glasses or what therapy is absolutely essential in ensuring a child’s success in such a way as to show they know more, do more, and their child is in better hands.

Here are some examples of casual competitive parenting within T21 playgroups:

  • A 17 month old with T21 is army crawling at a playdate. The mother of a different toddler with T21 whose child began walking at 15 months asks “How old is he?” with a slightly shocked tone in her voice, and follows up with pointed questions about his physical therapist and a story about how her child began walking and running because of all the specialized therapy she provided.
  • When two similarly aged children with Down syndrome are playing together and one parent demonstrates a skill their child has learned and asks, “Is your child doing this yet?”
  • A T21 parent uses social media to celebrate a new skill their child learned, while another T21 parent makes remarks exclusively about their own child’s accomplishments, perhaps even directly comparing, without so much as acknowledging the accomplishment of the child being celebrated in the post.
  • A parent seeks advice from another parent of a similarly aged child, but with the intention of using the encounter to highlight or list their child’s skill set or compare in order to “catch up” or demonstrate superior skills.

It doesn’t just happen with motor skills or communication milestones, either. There can be a one-upmanship when it comes to types of therapies, amount of therapies, extra lessons or classes, and even whether or not a parent is successful in finding an inclusive placement for their child in school. I have even seen parents self-righteously proclaiming their children as “high-functioning” to other parents. (Side note: functioning labels are really harmful to all disabled people, please don’t ever use them!)

Of course, this type of behavior exists in all areas of parenting. Even empty-nesters compare the careers of their children or grandchild counts amongst one another. Around the time I had my second child, my first child enrolled in a high-performing school populated with a large number of wealthy students whose family culture includes countless lessons, expectations of perfection in every area, and the resources to pursue that excellence. There is an unacknowledged competition amongst students and parents there too. Countless articles and blog posts demonstrate that this is a much broader cultural problem.

There are a number of specific things wrong with competitive parenting as it occurs in circles where disabled children are concerned. First and foremost, it is a microaggression against a disabled child. Children with Down syndrome are an oppressed minority group, and those claiming to be their allies should never use their energy to degrade them, regardless of how friendly and casual the conversation is made out to be. However insignificant it may seem to that parent at that moment, it is an act of violence against the child. Moreover, it’s a microaggression against their own child. When a parent pits their kid against another, it is done out of insecurity. Can you imagine being the kid whose parent always wants them to be on top? That’s an impossible and exhausting pressure, not to mention the pain of knowing your parent is insecure in your abilities.

Secondly, it’s a microaggression against a parent who is constantly advocating for their child in an ableist world. As if parents of children with Down syndrome don’t experience enough anxieties with the pity of parents to nondisabled children, the exclusion of their child in many settings, and a constant worry that they aren’t doing things the right way or providing enough supports. It is particularly hurtful to experience this treatment from a community that is supposed to offer refuge from that.

Lastly, it perpetuates the very ableist culture that rejects and excludes our children with T21. Modern western culture is achievement-oriented, competitive, and ranks children’s worth according to their abilities. We should be challenging this practice in every setting, rather than recreating it on a small scale in our own communities.

I am so lucky to get to watch dozens of babies, toddlers, and young children with Down syndrome grow up in community with my child. It is well worth jumping over the social hurdles of coming from extremely different backgrounds and perspectives to get to know these kiddos and their families (and even extended families). Some of them develop skills and hit milestones on the early side, and some on the late side. Some have ongoing medical concerns and some don’t. All of them are incredible people who bring me joy constantly. 

I would encourage parents of children with Down syndrome to work to build these types of relationships and to work extra hard not to fall into the pitfalls of modern, individualist, achievement-based parenting norms. Celebrate your child with T21 and their accomplishments! Celebrate your friend’s child with T21 and their accomplishments! Those accomplishments have nothing to do with each other except that celebrating them lifts up folks with Down syndrome while comparing those accomplishments drags all folks with T21 down. In a broader culture that does not value or acknowledge the lives and accomplishments of people with Down syndrome we can and should be celebrating constantly– whether that life or accomplishment belongs to our own child or someone in their T21 family. Your heart is big enough to love all the children in your child’s T21 circle and find joy in what they do, I promise.

Down syndrome, Parenting

Down Syndrome Diagnosis: What you Really Need to Know

When a new parent receives the news that their baby has Down syndrome, it is not always delivered in the best or kindest way. Sometimes, a geneticist who doesn’t have any real-life knowledge of people with Down syndrome feels an obligation to make speculations on the rest of that baby’s life when they are still in the womb or freshly born, based on outdated ideas about how disabled people live in the community. Other times, a new parent may get a very kind and compassionate diagnosis, but then turn to Google for more information and become inundated with information that may or may not be accurate, and is often overwhelming. Many hospitals still give out copies of Babies With Down Syndrome, a well-meaning book that outlines nearly every possible health complication a baby or child with Down syndrome can have, causing parents to worry unnecessarily about their new baby. Some people think medical information or information about government services is the priority after a child with Down syndrome is born, and that couldn’t be further from the truth. A baby was born! A whole new person exists in the world because someone worked to bring them here with blood, sweat, and tears.

Here’s some of the most important information your child’s geneticist may have forgotten to mention:

There’s an impulse you can have when you have a baby with Down syndrome to spend a lot of time trying to imagine what their life will be like– what they will do, what they will look like, what will their adulthood be like, and so on. This does not happen for most parents of typically developing children at this age, nor really should it happen with anyone. Your child is a baby. They have tiny fingers and toes for kissing, sweet smells in their neck, and squishy cheeks for kissing. I bet they have the sweetest breath you’ve ever smelled. For some reason, doctors and geneticists often want to give what they perceive as an “accurate” picture of the entire life of a person with Down syndrome when they are fresh out of the womb. And just like it’s weird to do that to other kids, it’s weird to put that on new parents of a baby with Down syndrome. Often times these professionals have no experience with anyone with Down syndrome after early infancy. They may not know anything about how people with Down syndrome interact within their families, communities, or schools. They may not have any idea what opportunities exist for people with Down syndrome. They’re not qualified to give information beyond current medical statistics, and even then their delivery can leave something to be desired.

All people have strengths and weaknesses. That’s true of people with Down syndrome as well. No parent can predict what their child’s strengths and weaknesses will be, and they shouldn’t.

Enjoy the cuddles and snuggles, rest in your postpartum, don’t worry so much about anything that is going to happen beyond 6 months from now. Just like with any other kid, you can’t really know anyway. Many of the guesses you could be making might be based on stereotypes or outdated ideas. Spend your time marveling at those bitty fingernails and baby sighs and try not to invent a future for them just yet. The future has never been so bright for people with Down syndrome– let that be enough for now. This time is precious.

-It is common for children with Down syndrome to be born completely healthy. While there are health complications associated with Down syndrome, many children with Down syndrome are healthy and do not need medical intervention. Babies who do need intervention, such as surgery, generally fare very well and go on to be healthy throughout childhood and adulthood. Of course, some folks with Down syndrome have medical issues that can be ongoing, but there is a lot of parent support out there if that’s a bridge you need to cross with your child, and modern medicine has a lot to offer in the way of well-tested treatments by doctors with practiced hands.

-There’s a lot of pressure to intervene in the infancy of a baby with Down syndrome. Early Intervention is often suggested before your head stops spinning, and people are telling you about bureaucracies you are going to have to fight and toys you should buy and exercises you should do and so on. The reality is that doing a ton of therapy, exercises, and intervention isn’t  backed up very well by clinical research. The most important thing you can do for a new baby, Down syndrome or no, is to be responsive their cues and tend to their needs. Sometimes babies with Ds have more subtle cues, so you have to pay a little closer attention, but they want the same things as all babies- to be held, to be loved, to be talked to, a baby massage, milk, clean diapers, to sleep on your shoulder, and so on. A lot of parents feel pressure to start therapy immediately or to “stimulate” their baby in some way. It’s okay to let your child just be a baby! Your job is to love them and communicate with them, and that does more than all the Early Intervention in the world ever could. Consider waiting to introduce the world of therapy to your baby, and do it slowly and purposefully when you do, looking to your child for cues about where they need support, rather than checking off the boxes a mommy blog tells you that you should or staying up all night creating a registry of specialized toys you are sure you need to buy to assure your child’s future.

There is nothing you can do that will ensure your child is exceptional. This is true for all children, but because therapy and Early Intervention exist for babies and toddlers with Down syndrome, sometimes people begin to believe that if they do enough things they can ensure their child will be a superstar of the Down syndrome world. Rather than pushing your child to be the top of the heap, focus on the ways in which they are exceptional to you. For example, how they light up when they see you, the sound of their voice, the way they melt into you when you snuggle up to watch a movie or the adorable way they hold their hands when they sign “more.” Your acceptance and approval are what will be important to your child in life, so let go of the search for approval or status with others.

-People are going to say really weird and sometimes rude things to you. This is a reflection of their hang-ups, not of you or your child. It’s okay to distance yourself from people who do this or set boundaries around how much energy you devote to educating people. Just remember to stay close to those who want to care for you and celebrate your child’s life. It can be you and your baby against the world, but it doesn’t have to be. Plus, it feels good to see other people adore your child. I promise you people will be lining up to adore your child soon enough if they aren’t already.

-Your baby is going to reach all their milestones in their own way, on their own timeline. That’s true for any baby, but for kids with Down syndrome, the spectrum can be a little wider and taller. Our culture can be really hung up on typical timelines, but the age at which a child develops a skill cannot predict anything about their future life or skills. It is simply the age at which they mastered the skill. Resist the urge to compare your child to others, even those with Down syndrome. Most children tend to focus development in specific areas for a time and switch around. Your late walking toddler may be a great communicator! Embrace a life where your baby takes the lead on their own timeline. It’s liberating to truly let go of these pressures. Celebrate the skills your child masters as they master them– you will find they are delighted to celebrate with you!

-A new person exists in the world– a beautiful baby! Congratulations! Welcome to the world! This little person is a living, breathing, miracle. There are countless possibilities for them, and for you. Your relationship with them has the potential to bring untold joy to your life and those around you who get to witness it. They will have their own, nuanced perception of the world and everything in it, and if you pay attention, they’ll share it with you.

 

Parents of children and adults with Down syndrome, what do you wish you had known when your child was diagnosed with Down syndrome? Please share in the comments!

Uncategorized

When Mothers of People with Down Syndrome Defend the “R” Word

Every so often, a mother to a child with Down syndrome writes a blog post explaining or defending their use of the “R” word for some reason or other. Sometimes the reason is a desire to get back to the dictionary definition of “slowing down,” other times it is because they believe their disabled child should be toughened up. Once a British mum wrote a post about how she mocks her son and calls him a ret*rd on a regular basis so he’s able to laugh at himself and not be hurt by strangers who use that word.

Usually, these moms present themselves as brave warriors, speaking out for common sense against the grain of overly sensitive, politically-correct, tender-snowflake mothers who will bash them. They may even play themselves as a victim or potential victim of backlash. Some may see themselves as engaging in a theoretical discussion by playing “devil’s advocate.” Every few months or so, there is a repetition of this phenomenon presented as a novel idea.

I tend to read these posts and their ensuing comments, under the misguided impression I will go back and argue with the points made and persuade people not to do this. The truth is, some arguments do not deserve the dignity of being refuted. I do not argue the finer points against using hate speech against racial, ethnic, or religious minorities, why should I spend my energy doing so for arguments in favor of using hate speech against people with developmental and cognitive disabilities? These arguments are ridiculous, and should not be validated in any way. I don’t argue with neo-nazis either. It’s not a debate– it’s a life or death matter. This isn’t a neutral term that can be discussed theoretically by people who are not threatened by the implications of it. It is not academic, it is not thoughtful, it is not engaging critical thinking– it is oppressive, harmful, and undermines the work self-advocates with Down syndrome and other disabilities are doing. It’s especially shameful given how difficult it is for people who are developmentally and cognitively disabled to be recognized, heard, or given a public platform.

“Ret*rd” and other hate speech against people with developmental and cognitive disabilities carries an implicit threat of violence. These are words that have historically been used to diagnose with the purpose of segregating and imprisoning disabled people where they became vulnerable to and victims of extreme physical and sexual violence, medical neglect, basic neglect, forced sterilization, and murder. Today, these words are used to continue to segregate and isolate disabled people where they become victims of harassment, restricted access to equal education, physical and sexual violence, murder, and extreme neglect. The words change from generation to generation (“idi*t,” “imb*cile,” “mor*n,” “cret*n,” “fe*ble-minded,” “ret*rded,” and most recently, “sp*cial,”) but the threat of violence and isolation remains the same. The institutions change, but the discrimination remains.

Disabled people, including and especially those with Down syndrome, have repeatedly asked that people stop using the word “ret*rd” and variations of it. They ask locally, giving talks at schools. They ask publicly, making PSAs, and giving speeches. This alone is reason enough that people should stop using it, and yet mothers of children with Down syndrome think it’s okay for them to speak over their children’s peers and community. This is unacceptable. Our children who have Down syndrome are ours, certainly, but they also belong to the disability community and their community of peers with Down syndrome. Out of basic decency, it should be a part of our parental praxis to connect them to their Down syndrome community, and to use the language and terms people with Down syndrome themselves find the most acceptable. Our job as parents of people with Down syndrome is to elevate their status by respecting them and their ideas and autonomy. We should be signal boosting their work, not undermining it.

With every generation, the hatred and discrimination against developmentally and cognitively disabled people turns a medical term into a euphemism, and then a dysphemism, and finally a slur. We have to keep shifting our language as medical terms for disabled people become hate slurs because the hatred of disabled people is not going away. The words’ meanings haven’t changed. The list of medical terms turned slur (“idi*t,” “imb*cile,” “mor*n,” “cret*n,” “fe*ble-minded,” “ret*rded,” and most recently, “sp*cial,”) are still used to essentially mean “ret*rd” in the derogatory sense because being seen as intellectually inferior is still about the worst way a person can be perceived in society. Moreover, it is used as a basis to deny people basic human rights, respect, and dignity.

It’s time all parents of disabled children prioritize combating the societal hate and exclusion of their children over their “right” to use hate speech casually because they feel close to the issue. The “dictionary definition” of “ret*rded” wasn’t something that was taken from you, it is a violence done to a group of people more vulnerable than you. It is not brave for nondisabled people to take this stance, just as it is not brave for white parents who adopt children of color to casually use racial epithets because of their “dictionary definition” or to teach their children that “words are just words.” Words are not just words. They are communication, and hate speech communicates violence. Let me repeat that for those in the back: hate speech communicates violence.

 

[Author’s note: I will not repost any of the articles I have seen defending the use of this word. They do not need to be given air time. I will give no platform to hate speech on my blog. I will, however, keep adding links to self-advocates talking about the “R” word as I find them.]

Disability Justice

Down Syndrome Superpowers

Recently, while I was giving a presentation on Down syndrome to a class of 7th graders, a student asked me, “Is there anything that people with Down syndrome are extra good at? Like, better than your average person?”

My mind raced through how to use the last 90 seconds of class time to answer in a way that was in line with both the social model of disability and the setting: science class. This wasn’t an intimate conversation with a friend where I could speak anecdotally or philosophically for half an hour about my thoughts on the subject. This was a good question that I wasn’t ready to answer.

Still, I knew somewhere in the back of my brain that I had read some convincing studies on Down syndrome and empathic behavior and I remembered some compelling thing I read about hypotonia (low muscle tone) and swimming once upon a time.

After I remarked on what a great question it was, I quickly replied that there was evidence that low muscle tone could be an advantage in learning to swim and that people with Down syndrome can have a remarkable capacity for expressing care for others, and adeptly navigating social encounters. I mentioned that I never knew how to gracefully exit a conversation with a new acquaintance at a party until a couple years ago when 13 year old girl with Down syndrome showed me how. The bell rang, and that was what went on the record for this class of 7th graders.

Of course, people with Down syndrome might be more likely to have characteristics and abilities that are valued in a world built for nondisabled people, just as we know it is likely for them to have characteristics that are devalued. It gets murky for me here, though. I refuse to try to come up with ways to pander to nondisabled or neurotypical people to make them see people with Down syndrome as more human or deserving of life and inclusion because people with Down syndrome have characteristics that are valued in an ableist society.

There are studies that have shown that people with Down syndrome look at the faces of people in distress for longer, and show more caring and comforting behaviors to those in distress. There is a difference between this and empathy, however, because the same study shows they may be less likely to take on or even label the emotions of others, which is not necessarily a bad thing at all. There are also studies that show that people with Down syndrome may have an increased capacity for perceiving certain moods based on facial expression. Those with Down syndrome may smile more than a person without Down syndrome (Fidler et al, 2005).

We don’t get to assume those are superpowers carried on the 21st chromosome, however, because the question hasn’t yet been thoroughly asked in response to these findings: Is this a survival strategy? Living in a world that is incredibly hostile and exclusionary to disabled people, particularly cognitively and developmentally disabled people– have folks with Down syndrome learned how to interact socially in such a way as to keep themselves safer? Is the ability to perceive moods developed because reading behavior is important to predicting an unsafe situation? Does frequent smiling encourage nondisabled people to be kinder and more inclusive to individuals with Down syndrome? I wish we knew more about the answers to these questions. I wish our society wanted to know the answers to these questions badly enough that there was funding to study them. Most importantly, I hope that it is people with Down syndrome themselves who get to report back on this.

Asking the question, “Is there anything people with Down syndrome are better at because they have 3 21st chromosomes?” opens up the door to more questions than it will ever have answers for. Is it important? Will this information be used to further objectify people with Down syndrome? Will we only view people with Down syndrome as worthy of life if they have something extra to contribute? What about people with Down syndrome who do not exhibit those traits, will they then be seen as tragic (or more tragic)? Will this be used to put other people with developmental disabilities down, such as research that is used to distinguish those with Williams syndrome from their developmentally disabled peers as more friendly and musically inclined, and the so-called Down syndrome advantage? Will this increase the tendency to generalize people with Down syndrome and continue to reduce them to a set of predictable behaviors and abilities? Will it perpetuate stereotypes of people with Down syndrome as “angels?”

People with Down syndrome have plenty to be proud of, and shouldn’t need a disability superpower to grant them higher status or further a movement for their rights. They shouldn’t need to smile more, be more charming, show more caring behavior, or anything else to be considered valuable. How can we ask this question and avoid these pitfalls until we have truly dismantled our ableist culture? I don’t know that we can. I came to this blog post to ask questions today, not answer them. I do know that all disabled people are deserving of life, love, appreciation, and inclusion, whether their or not disability gives them a “superpower,” whether they are pleasant to be around by nondisabled standards or not.

I wish I lived in a world where we weren’t asking these questions to assign value to people or try to counter eugenic practices. I wish we got to ask as curiously as that charming 7th grader did.