Tag Archives | advocacy

People First Language and Identity: There’s More to the Conversation

I came across a link to this article in my FB newsfeed earlier this evening, and it’s got me thinking about a lot of things.

The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn.  You know what?  Down syndrome absolutely does define him.  Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes.  So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome.  It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable.  We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.

I’ve begun talking to Finn about Down syndrome.  At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn!  That’s Finnian!”  In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it.  He should own it, damn it.  I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have.  I never want any of my kids to wish they weren’t who they are.

So, this leads me to the People First Language issue.  I admit that I’m wrestling with it.  Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.

I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn.  There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts.  Maybe this is a Pollyanna-ish view, I don’t know.  In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.

There is also the problem of word usage and how awkward it can be.  I’m talking about grammar, I guess.  See, while autism has an adjective equivalent (autistic), Down syndrome does not.  So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective.  Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid.  Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with.  If you say, “Trisomy-21,” most people have no idea what you’re talking about.

Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint.  Ds isn’t the only disability like this; what about cerebral palsy?  Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”?  Or pretty much any “syndrome.”  How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome?  None of those have adjective equivalents, so it’s just awkward to use them as adjectives.

So, let’s just say “disabled” then.  I can get on board with that, except that it’s just such a negative word.  I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable.  Are disabled people inoperable?  Do they no longer “work”?  No.  And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect.  In fact, the dictionary defines the prefix dis as follows:

Screen Shot 2016-03-03 at 8.58.12 PMI wish we had a word that wasn’t itself so negative.  “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist.  So where does that leave us?  I don’t know.  I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.

Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating.  A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used.  A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses.  A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way.  Speaking for myself, having Finn was my first ever experience with disability.  When he was born, I didn’t know Down syndrome or disability from my ass.  God, some of the things I thought and said and felt in the beginning truly make me cringe now.  But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community.   I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.

Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language.  That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations.  Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.

So, what I’m getting at is that it’s just not so cut and dried.  Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.


Down Syndrome In Our Midst

Finn is Star of the Week at school this week, and we will be presenting this poster in his class Monday morning.

Finn is Star of the Week at school this week, and we will be presenting this poster in his class Monday morning.

Usually when I write about Finn or Down syndrome, I write with the unconscious assumption that most people who will read it are people who have followed my blog for a long time and are familiar with our family and how Down syndrome plays out for us.  That last post, though, about the r-word, made it pretty clear that there are people who have only recently stumbled across my blog.  The fact that I am still, after all this time, explaining why the r-word is offensive, and actually getting sucked into arguments with commenters about it tells me that some of you are new here.  So, I’d like to tell you about Finn and about Down syndrome from this family’s perspective.

When Finn was born and we found out that he has Down syndrome, it was a very sad time for us – mostly for me; Michael took it more in stride than I did, maybe because he had worked in the disability community for years and it therefore didn’t scare him so much, or maybe because he’s just generally more laid back than I am.  Anyway, the sadness that cast a pall over our family during that time was undoubtedly compounded by the fact that Finn faced almost immediate surgery and had to spend almost two weeks in the hospital, mostly away from us.  It was really, really hard to hand our tiny, helpless newborn over, and then to watch him struggle to recover from surgery, and to not even be able to be with him all the time.

In the beginning, Down syndrome felt like this big, scary thing – I honestly had no idea what it would mean for Finn or for our family, but it all seemed very bleak back then.  That bleakness really was chalked up to the big unknown.  I’m sure I had some preconceived ideas about Down syndrome, but they were fairly vague, as I had never so much as met a person with Down syndrome before in my life.  I have a vague memory from my childhood of being in a restaurant or somewhere with my mother, and her pointing to a person with Down syndrome and saying the person was a “Mongoloid.”  Other than that – I had some inkling that they were prone to heart defects, that they were mentally retarded, and beyond that, I really didn’t know.  Even “mentally retarded” was really a big mystery to me.  What exactly did it mean?  My biggest fear was that it meant he might be utterly non-functioning and would never recognize his family or be able to connect with us.

Down syndrome has turned out to look very different from what my worst fears were.  Whatever sorrow and fear we had at one time left us a long, long time ago.  Finn is a little boy who makes us laugh, who frustrates us, who loves music, and dances with abandon.  He can be sweet and charming, and he can be a bratty pain in the ass.  Contrary to popular belief, kids with Down syndrome are not happy all the time, or even happier more of the time than typical kids are – at least Finn isn’t.  He’s actually a pretty moody kid and is prone to tantrums.  He gives excellent hugs and sloppy kisses, but he’s no more loving or affectionate than any of my other kids, so he’s busted down that stereotype as well.  Also, he does not have some sixth sense that enables him to tune into other people’s moods and emotions more keenly than any other kid I’ve ever met, so I call bullshit on that myth, too.  Is it especially challenging to be his parent?  His mood-driven behavior can be challenging to deal with.  It is often a challenge to understand what he is saying, because he has poor articulation and enunciation.  That’s pretty typical of Down syndrome.  I wish he were potty trained, but he is not at this point in time.  Mostly my feelings about that have to do with his personal dignity and having non-family adults at school (his aide) having to change him, and therefore have intimate contact with him.  I have trouble with that.  Changing him myself doesn’t faze me – I’ve been up to my eyeballs in diapers for almost 12 solid years.

Some kids with Down syndrome have very serious health issues, and that can present some big challenges and a lot of stress.  That has not been our experience.  Finn had one major surgery at birth to correct an intestinal malformation (something actually pretty simple and straightforward, but that forty or so years ago, he would have died from because nobody would have been likely to fix it), he’s had a handful of other minor surgeries and procedures, a few illnesses (although none that have required hospitalization), and that’s it.  Overall, he’s a healthy little boy.

The biggest challenge by far pertaining to Finn and Down syndrome is the prejudice, outdated notions, and stereotypes that are prevalent in the world we live in.  I cannot stress that enough: the biggest challenge we face, and without a doubt the thing that will cause Finn more suffering in his life than anything else, is prejudice.  It comes in many forms: the r-word being thrown around; people defending their right to use the r-word, or arguing that it’s not offensive; pity; well-meaning people believing that he doesn’t belong in a general ed classroom because it takes away from the “regular” kids, or isn’t fair to the teacher, or he can’t keep up anyway, so what’s the point?; adherence to generalizations and stereotypes; a belief that it takes “special” parents to raise a “special” kid (as if he’s harder to love than a typical kid).  Some prejudice is subtle, some is blatant.  It all hurts.  It all makes our life harder and Finn’s life harder.

One of the first questions I often get about Finn is, “Is the Down syndrome severe?” or “Is he high functioning?”  Listen, Down IMG_3962syndrome is Down syndrome is Down syndrome.  What I mean is, if a person has it, they have it.  It’s like pregnancy – it’s all or nothing.  There is no such thing as “severe” or “mild” Down syndrome.  How it manifests varies from person to person.  Are some people with Down syndrome more severely or mildly affected?  Yes.  Which brings me to the “high-functioning” question.  When people ask me this, I answer honestly: “I don’t know.  Oh, and also?  I don’t give a shit.”  Is he high-functioning compared to what?  Listen, there are things he can do, and things he can’t do.  There are things he will one day be able to do, and other things he will never be able to do.  He’s five years old right now; I have no idea what he will be capable of in a year, or five years, or twenty years.

I don’t talk or write much about Finn’s achievements.  It’s not because there’s nothing to write or talk about, it’s because I refuse to value him or encourage anyone else to value him based on his abilities or accomplishments, or lack thereof.  That’s what I mean when I say that I don’t give a shit if he’s high-functioning or not.  It doesn’t matter to me.  He’s my kid.  I adore him (even if he bugs the shit out of me sometimes), and am fiercely protective of him.  I want people to understand that he is a unique, complex human being, and is intrinsically worthy and valuable based solely on that.

I have a lot of trouble with this belief that having a kid with Down syndrome is this big tragedy, or even this sense that I earn extra admiration because I so stoically deal with having a kid with Ds.  I am dealing with various challenges with some of my other kids who don’t have Down syndrome or any other disability – things that stress me out and keep awake at night with worry.  Being a parent is like that – it really doesn’t matter if you have typical kids or atypical kids.  Ruling out Down syndrome may rule out certain risk factors, but risk factors certainly aren’t guarantees or predictions anyway.  It may rule out certain realities, but other realities are still there.  Life is beautiful and wonderful and gut wrenching and messy – no matter what.  Our life would not be any easier without Finn in it, without Down syndrome in it.

Our life really isn’t hard – it’s just life.


On two separate occasions this week, “retarded” was casually flung at me by two different people.  One was a stranger, someone I had just met, and we were having a serious discussion about something, and BAM, there it was.  “They think we’re retarded!” She said.  The other was someone I care very much about, and it came right on the heels of a discussion about Finn and Down syndrome and how that’s all impacted me and our family.  “It’s so retarded!” she said about something unrelated.  Both times I was stunned.  Caught off guard.  Both times, I didn’t say anything.  I didn’t know what to say.  So I’ve been stewing about it.  Not angry . . . okay, yeah, somewhat angry.  But mostly just . . . weary.  And, yeah, hurt.  Because words can cut deep.

These were not surly, smart-mouthed teenagers.  These were moms.  I think maybe that part has gotten to me most of all – well, that and the fact that both of these people know that I have a kid with Down syndrome – a kid who is retarded.  These are adults.  Parents of children themselves.

This kind of talk is not limited to playground vernacular.  Mature, educated grown-ups use this sort of language.  It’s become somewhat baffling to me.  I mean, unless you’ve lived off the grid for the past few years, you know that “retard” and “retarded” are frowned upon.  The awareness campaigns have done their job: people are aware.  “Retarded” is out.

And yet, the slur persists.

If you’re a parent – especially of young children – you really need to pay attention to what I have to say:  YOU ARE A ROLE MODEL. Your kids are looking to you for their cues on how to navigate the world around them.  If you use language that disparages other people, or stereotypes other people, your kids are picking up on that – and I say that with 100% certainty.  Your kids are learning to see themselves as standing apart from other groups of people, rather than as members of one human family.  Your kids are learning to look down on people who are different from them, not to value diversity, nor to see everyone as intrinsically worthy of kindness and respect.  And your kids are growing up with my kids.  Your kids are the future teachers, doctors, politicians, social workers, store managers, judges, bank tellers, and waitresses of the world.  The same world my kids inhabit.  Where do my kids fit into your kids’ world?  Where will Finn fit into that world?

Seriously, people.  Saying “retarded” – it’s not cool.  It’s not funny, it’s not edgy, and it’s definitely not harmless.  When you say, “That’s retarded,” you are talking about my son, whether you want to believe you are or not.  You are making a comparison to a little boy who is intellectually disabled – even if you insist that you’re not.  If you’re not making that comparison, what the fuck exactly are you saying then?

Stop.  Please, just stop.  It hurts.



World Down Syndrome Day


The following was originally posted last year on World Down Syndrome Day.  Reposting because it still holds true.

Today, March 21, marks the ninth annual World Down Syndrome Day, a day now recognized by the United Nations as a day of awareness and celebration of Down syndrome all over the world.

There is a lot of pressure on us parents of children with Down syndrome, on us advocates, to advocate our hearts out today – to raise a flag, to shake our fists, and to say something profound.

Frankly, I’m weary. Weary that we’re still fighting the same fights for compassion, respect, and inclusion. Basic human dignity. Weary that behind the scenes, we have trouble agreeing on what, exactly, we should be advocating for.


All I want is to raise my kids in a world that’s going to see all of them as valuable human beings. All I want is to be able to go somewhere – anywhere – without constantly being on edge, waiting for someone to drop an R-bomb. All I want is to be able to take my kid to the doctor’s office and not have to educate them about Down syndrome facts and myths. All I want is to be able to count on my kid being welcome to attend the same school his siblings attend. All I want is for people to see my kid as a kid – yeah, a little different, but not some lowly or otherworldly creature who should be disdained or fawned over. All I want is for people to see me as just a mom – one who is defined far more by the sheer number of kids she has than by the fact that one of them sports an extra chromosome.

photo copy

I wonder if there will ever come a day when our advocacy will no longer be necessary.

Finn at School

Came out of a surprisingly wonderful parent-teacher conference with Finn’s teacher a little while ago, and wanted to jot it down while it’s still fresh –

She started by telling me how glad she is to have Finn in her class, and how little she knew about Down syndrome before, and how much she’s learned.  She told me, very heartfelt, that she is so impressed with the growth Finn has made since he started in her class back in the fall – academically, socially, and developmentally.  She talked about how he well he follows routines now, how enthusiastic he is about being there, and how he went from almost exclusively “parallel play” at the beginning of the school year to truly interacting with his peers now.  She talked about how more than the academic aspect, TK is mainly an opportunity for children to learn how to be in school, and Finn has shown tremendous growth.

Most meaningful, however, was her telling me that having Finn in her class has helped her to grow as a teacher, and helped the other students grow as little people and citizens.  She told me how the other kids, while having some recognition that Finn is different, see him as an equal, and include him in all of their activities without reservation.

This, people, is inclusion.  This is why we fight for it.

We talked about areas in which Finn struggles – mainly transitions and deviations from the routine he becomes accustomed to (for instance, when he has a substitute aide, or when school is on a modified schedule as it is this week, he tends to have a hard time going with the flow).

Finally, after all these months, I broached the subject of our last IEP meeting, since we have another coming up probably next month.  I’ve felt for some time that that meeting back in November changed the tone of our relationship with Finn’s teacher.  It was so contentious, and I have no doubt that it was off-putting to her to see these parents come in and have all this animosity; I’ve sensed a standoffishness from her ever since then.   I told her that I know we have another IEP meeting coming up and that I am very sorry for how heated and contentious the last one was, but I wanted to assure her that none of that was directed at her, but rather at the district people with whom we’ve had to fight over every single thing pertaining to Finn since he turned three.  She said, “I can’t blame you.  I can’t say there was anything wrong with your approach.  You’re a mom.  I’m a mom.  That’s what we do: we fight for our kids.  I would do the same thing.”  I so appreciated hearing that, and I feel like the air has been cleared, to the extent that anything was actually iffy between us.

As far as the “aggressive” behavior Finn was exhibiting a while back, it appears to have stopped.  It was always directed at one little boy in particular, and Finn’s teacher and I both came to the conclusion that Finn singled this boy out because he has taken a particular liking to him, and pushing him was his way of engaging the boy.  It did get to the point that I was very upset about it because I was called into two meetings at school about it and I finally did request a Functional Behavior Assessment.  However, when I met with the school psychologist and the behavior specialist to sign the form consenting to the assessment, after explaining the situation as I knew it, we agreed that rather than jumping right to a FBA – which would just add one more thing to his file that will follow him around forever – the behavior specialist would conduct a “behavior consultation” first – which is really just an informal observation and a recommendation from there.  He’s the one that actually made the suggestion, and I was very grateful.  To date, I know he’s done his observations, but I have not yet heard any word from him about recommendations.  In any case, Finn hasn’t exhibited “aggressive” behavior since before the behavior specialist went in to observe Finn.

Anyway, I’m feeling really good about where Finn is right now!

He’s Not a Birth Defect.

I came across this article on the front page of MSN when I signed onto my laptop this afternoon: New Blood Test is Better At Finding Birth Defects, Study Finds.  The blood test isn’t really news anymore; it made its debut on the market a couple of years ago (I wrote about it here).  I guess what’s news is that now a study has been undertaken to determine just how accurate the new blood test is – and hot damn, it’s pretty accurate.  So, every pregnant woman in the US can now rest easy and know that she doesn’t have to give birth to a birth defect.

Well, actually, that’s not true.  Not until insurance companies can be convinced to routinely cover the cost of these blood tests, which apparently ranges from around $800 to $2,000 a pop.  And how will the companies that have developed these tests convince insurance companies to cover the cost?  By convincing insurance companies that it makes economic sense to cover the cost of the tests (you don’t really think your health insurance carrier gives a flying fudgesicle about your actual health, except to the extent that your actual health affects your insurance carrier’s bottom line, do you?).  And as much as the companies that have developed these tests tout them as providing “information” and “peace of mind,” the way they’re doing that is by helping expectant parents (and thus, insurance companies) weed out birth defects that could be potentially costly.

I wish I could read these articles with some emotional detachment, I really do.  Frankly, it’s no fun at all to read these things and feel the sharp slap of a reality check: people see my son as a birth defect – a preventable birth defect.  People don’t want to have a kid like mine.

A 29-year old woman is mentioned in the article and said to have been “ecstatic” when she underwent the new blood test and got the “great news” that her fetus was “healthy.”  Apparently, she tested specifically with Edwards syndrome (trisomy 18) in mind – I admit that it’s easy to understand the relief someone would experience at learning that their child-to-be did not, in fact, have a condition that is generally not compatible with life.  Why is Down syndrome (trisomy 21) grouped together with Edwards syndrome and Patau syndrome (trisomy 13) for purposes of these prenatal tests anyway?  Merely because they’re all trisomies and are detectable?  Because the fact is that Edwards syndrome and Patau syndrome are really in a different category, as they are generally not compatible with life, whereas Down syndrome is very compatible with life.

From the article:

Doctors say that advances like cfDNA simply provide more accurate information. “The first step is being able to reliably identify those pregnancies that are at risk for abnormalities,” says Dr. Michael Greene, Chief of Obstetrics at Massachusetts General Hospital. “What if anything the patient wants to do with the information is up to them.”IMG_3680

But see, that just isn’t true.  These tests do not “simply provide more accurate information.”  How that information is presented to expectant parents, how they are counseled by their medical care providers, right down to the language used – it all has a huge, huge impact on what patients will do with the information.  So, to imply that these tests and the medical community that advocates their use and administers them are merely providing a service to expectant parents – it’s just not true.  The whole situation is so loaded with biases and misinformation and dollar signs – the deck is so stacked against fetuses with Down syndrome, it’s just tragic.

Sometimes I feel so beaten down by how hard I have to fight just to get the world to see Finn as a person.  I know all the prenatal tests were not developed with Finn specifically in mind, and yet, how can I not take it personally?  Finn has Down syndrome.  These tests were developed and are utilized as a means to prevent kids like Finn – kids who are seen as defects.

As I was fuming after I read that article earlier today, it hit me that none of my other kids has to prove they are valuable human beings; I’ve never had to fight for any of my other kids to be given the same opportunities as their peers; I’ve never had to ask anyone to stop using derogatory language that targets my other kids; I don’t have to worry about anyone looking at any of my other kids and thinking to themselves, “Boy, am I glad I don’t have a kid like that”; and I don’t have to sit and stew over tests being developed to prevent future occurrences of kids like any of my kids except Finn.

A Mind of His Own

There was a time when Kevin regularly spoke out about the use of the r-word.  He was kind of known for it, especially after he gave this speech in front of his middle school student body and their families:

In response to that speech, he received a standing ovation, and people in the audience were crying.  Schoolmates and parents approached him and told him, “I have a brother with autism . . .” and “My daughter is developmentally disabled . . .”

He used to wear a t-shirt to school that said “Retard is a Hate Word” across the front.  He spoke up to peers and even teachers who said “retard” or “retarded” (and you might be surprised at how many teachers use language like that).  I kind of saw him as a hero.  What courage it took to speak out and set yourself apart and risk social suicide at an age in which fitting in means everything.

A few years have passed, and Kevin is now almost 17 years old, and a junior in high school.  He doesn’t speak out so much anymore about the r-word.  I have to admit that it’s been a little painful for me to discover this and try to accept it.

My first inkling was a few months ago when a teenage girl sent me an email through my blog . . . I can’t remember all the details, but she had a brand new sibling or cousin with Down syndrome, and she was finding herself extremely aware of the ubiquitous, casual use of “retard” and “retarded,” and wondered how to deal with peers using that language.  I remember asking Kevin if he would mind my giving her his email address since this is a situation he’s been very familiar with.  He said, “Sure.  But, you know, Mom, I gotta be honest with you . . . at this point, I don’t say much when people use those words.”  I was very taken aback.

It came up again last night – I don’t even remember how.  But he explained to me that, looking back, he thinks he went through a period of being kind of “obsessed” with speaking out about the r-word, and maybe it was a stage he had to go through to figure out exactly where advocacy was going to fit into his life.  He said that after a while, he grew to resent constantly feeling obligated to speak out, and it felt so futile anyway, because most people would just argue with him about why it is perfectly acceptable to say something is “retarded,” and he was told over and over that he was just too sensitive.

He said he still feels strongly about it, but he’s no longer willing to speak out every time he hears it.  It’s a matter of choosing one’s battles, he said.  He also said, “You’ve always told me, Mom, not to just swallow what anyone tells me, including you, and to make up my own mind about things.”  Touche, son.

I told him that I respect his feelings and views and that I’m glad we can talk about these things.  And I told him that, yeah, it kind of hurts, because I’m his mom, and I’m also Finn’s mom, and I have a fierce loyalty to each, and I’d like to believe that he feels a fierce loyalty to Finn.  “Of course I do, Mom,” he said, rolling his eyes.


I reminded him that doing the right thing often means not doing the easy thing, and that I want him to always act with integrity.  And that was the end of the lecture.  I don’t want him to resent advocating.  I know he loves Finn and will always be there for him.

But watching your babies grow up and figure out for themselves how they see the world, how they fit into it, and what role they want to play in life – it’s not always easy.

And so, I am left contemplating all of this.

Talking to Finn’s Class About Down Syndrome

This morning I went to Finn’s TK class and read My Friend Isabelle to a rapt audience.  If you haven’t read this short, sweet book, it’s a perfect way to introduce Down syndrome and differences to young children.  The story talks about how two friends, Charlie and Isabelle, are the same in a lot of ways, and different in other ways, and how differences make the world such an interesting and wonderful place.  Although the narrator, Charlie, never mentions Down syndrome, the story is a wonderful springboard to have a conversation with young kids.

After I read the story (and, as I suspected I would, I grew teary reading it), I used this as a guide to talk to the kids a little about Finn and about Down syndrome (courtesy of my friend, Lisa):

My Friend Isabelle is a story about two preschool friends, Charlie and Isabelle.  Charlie and Isabelle have many things in common as well as some differences. 

While Charlie is tall, Isabelle is short.  Charlie is fast and Isabelle takes her time.  But they both like to dance, to draw and paint, and to go down the slide on their own.  They both sometimes forget to share and cry when their feelings are hurt.

What is the same about all of you in this class?  Well, each of you goes to ________ School and is in Mrs. Taylor’s TK class.  You probably share some hobbies or interests with other kids in the class, and you probably have some things that are different from your classmates.  Some of you may be really good at writing your letters and others may be really good at telling stories or helping classmates.  Everyone in the class has something valuable to contribute.  Life is more fun and interesting with all kinds of friends.

In this book, Isabelle has Down syndrome, like Finn.  Finn is like Isabelle in some ways (he likes to dance, and he likes to do things by himself), but he is also like Charlie.  He moves fast sometimes, and he knows a lot of words.  Finn may not move or talk the same as other kids in the class, but he wants the same things you want:  to be treated with kindness, to learn and have fun at school, and to make friends.

Sometimes we can see differences or similarities between people (like if they have blonde or brown hair, or if someone is a boy or a girl).  But there is a lot that we can’t tell just by looking at a person (like what that person enjoys, is good at, or even what they have a hard time doing). 

It’s nice to have friends, isn’t it?  And even though it is fun to have some things in common with our friends and classmates, the world would be a pretty boring place if everybody was exactly the same.  We learn a lot from people who are different from us.

No matter what, everyone wants to have friends and to be treated with kindness.

Then I asked the boys and girls if they had noticed that Finn was a little different from them in some ways.  Crickets.  Seriously, none of them has registered that Finn is any different from any of them – despite the fact that he has an aide, that he sometimes leaves the class for OT, and that he’s a little difficult to understand when he talks.  The only thing any of the kids has really noticed, it seems, is that Finn is “little” (yes, he is!).  I thought this was really awesome.  Finn has been accepted as a peer without reservation.  This is inclusion at its best.

Still, I am glad that I went in and talked to the boys and girls about Down syndrome, because eventually they will begin to notice differences between themselves and Finn, or between themselves and other kids and other people, and I think that giving them an honest, age-appropriate introduction can plant the seeds of tolerance and acceptance.

I also tailored this letter to parents from my friend Lisa for Finn and printed a bunch of copies for the teacher to give to the parents of Finn’s classmates:


photo copy

Last but not least, I tailored this which my friend Gillian wrote and gave it to Finn’s teacher.

All in all, it went really well, and I’m glad to have had the opportunity to talk to Finn’s class.

So, how is Finn doing in a general ed TK class?  In the slightly more than a week that he’s been there, he has settled in very nicely.  It takes a little doing to get him going in the mornings, but once we arrive at school, he’s raring to go.  I put Scarlett in the stroller, and we walk from the parking lot to Finn’s classroom, and he’s displaying a streak of independence in having made clear of late that he no longer intends to hold my hand as we walk.  Because he has a tendency to bolt, I’ve become accustomed to keeping a vice grip on his hand when we’re out and about . . . but I’m going to go out on a limb here and say that it seems his tendency to run off is maybe petering out a bit.  He actually will walk with me to his classroom, without holding my hand (and he took a walk with Daddy to a neighbor’s house last weekend – a couple blocks away – without holding Daddy’s hand).  Progress!

When we get to his classroom, he’s all business as he takes his backpack off and hangs it on the hook with his classmates’ backpacks.  Kids greet him by name: “Hi, Finn!”  “Hey, Finn!”  Sometimes he says “hi” back, and sometimes he just grins at them.  And then he walks into the classroom by himself and sits down on the rug with all the other kids.  He seems to have settled into the routine.  I’ve gotten nothing but positive reports about how his days go, and when I pick him up, he’s waiting in line with his classmates, his aide nearby, but seeming to have less and less of a need to hover over him.  He’s always happy to see me, and walks back to the truck without holding my hand.

I’ve not spent any time in the classroom while he’s there, except this morning, but I have a good feeling about all of it.  I really, really like his teacher – she’s just very warm and down to earth and approachable.  She told me this morning, “Finn is one of us.”  I also really like the aide Finn has for the time being, although she’s only there through October (I don’t know why), and then Finn will apparently get a new aide – I wish there wasn’t going to be yet another transition to deal with, but that’s the way it is.

So: so far, so good.  Really, really good.

Finn’s School Placement – Update

I wrote about the resolution we reached with the FULLERTON SCHOOL DISTRICT earlier this week, but the FULLERTON SCHOOL DISTRICT somehow stumbled across that post here on my blog (funny, huh?) and, in the FULLERTON SCHOOL DISTRICT’S view, it was in violation of a certain CONFIDENTIALITY AGREEMENT, the details of which I am not at liberty to reveal because it’s, well, confidential.  I was advised to take the post down, which I have.  However, as I feel it is important to explain where this long, contentious journey with the FULLERTON SCHOOL DISTRICT has led us in regard to Finn’s placement, I offer this revised version:

We met with the FULLERTON SCHOOL DISTRICT last week.  Our attorney was present.  A discussion took place, the details of which I am not at liberty to discuss because of a CONFIDENTIALITY AGREEMENT.  I think it is safe to say, and not in violation of said CONFIDENTIALITY AGREEMENT, that emotions ran high and Michael and I were not overly pleased with the direction the discussion took.

In the end, however, we reached an agreement regarding Finn’s placement for this school year, the details of which I am not at liberty to discuss due to a CONFIDENTIALITY AGREEMENT.  We are pleased with the placement decision reached, but absolutely disgusted at what it took to obtain such a placement.  We are extremely disappointed that we had to hire legal counsel and shell out money we can hardly spare in order to secure this placement for Finn.

Our dealings with the FULLERTON SCHOOL DISTRICT with regard to Finn – from the time he transitioned two years ago at the age of three – have been overwhelmingly negative.  The FULLERTON SCHOOL DISTRICT has shown a bias time and time again for its own interests, and not those of the child it is duty bound to serve.  It is also my belief that the FULLERTON SCHOOL DISTRICT utilizes CONFIDENTIALITY AGREEMENTS in this manner in order to retain the ability to continue to screw families and children.

In any event, Finn will start school next week.  My dealings with the school personnel thus far have been very positive and I am hopeful that this will be a new and exciting chapter for Finn that will allow him new opportunities, including the opportunity to belong, to positively impact his peers, and to grow.

What’s Wrong With Stereotypes?

There’s this weird phenomenon going on: parents within the Down syndrome community suddenly seem intent on promoting stereotypes about Down syndrome.  (Let me just be up front and say that I like Meriah.  She and I have been friends, and I admire a lot of what she writes – but this?  I feel that she is way, way off base.)  It’s kind of mind-boggling.  I mean, a huge part of the whole advocacy movement that I’ve witnessed and been a part of since Finn was born is about breaking down those stereotypes and demanding that the world see past preconceived notions to the unique individuals that are our children.  But suddenly there are parents who are seeing the old stereotypes in a new light and have decided that we should all dust them off and reconsider them – let’s just stop bullshitting ourselves, admit that THEY really are supernaturally happy, intuitive, insightful, etcetera, etcetera, and embrace it by god!

I’m not even going to try to figure out what this is all about, or where it’s coming from.  I will say, however, that I think it’s damaging.  No matter how “positive” the trait, when you attach it so sweepingly to an entire population, it’s offensive, it’s dehumanizing, it marginalizing, and it’s damaging.  It sets up expectations; it arrogantly presumes to know things about a person that you can’t possibly know, merely based on a certain classification – whether it be ethnicity, gender, sexual orientation, religion, or yes, chromosomal makeup.  It robs people of their right to be unique individuals.

That post of Meriah’s stirred up enough feelings for me – the comments were worse.  This whole “Just wait, you’ll see . . .” that I’m actually seeing from a number of parents in the Ds community directed at other parents – man, that chaps my hide.  How arrogant and condescending for any of us to decide that we know how it’s going to be for someone else – that we know what their kid is going to be like.  Do we really not see the problem with this?

Following is something I wrote in October, 2011 about stereotypes.  It is still true today.


Sometimes I forget that the whole reason there is a need for advocacy is because the world my son was born into is not entirely kind or accepting.  It’s easy to write things here on my blog and feel a sense of rightness, and be lulled into believing that if I explain myself well enough, of course people will get it.  Not that everyone has to agree with me – seriously, that’s not it.  With regard to advocating for Finn and trying to raise awareness, the bottom line to me is this: are you a person committed to doing your part to make the world a kinder place for everyone, or not?  I guess another way to put it is, are you part of the problem, or part of the solution?

People want to cling to their rights and freedoms – the right and freedom to think and say whatever they want, with little or no regard to how those views and words might impact someone else.  Just because you can, though, doesn’t mean you should.

I guess I was a little surprised that a couple of people left comments on my recent People-First Language and Stereotypes post defending  . . . well, stereotypes.  I’m having a hard time understanding how anyone can defend this or believe that it’s not offensive.  I think Michael explained it best:

‎”All redheads are adorable” is a generalization. “All Jews are stingy” is a stereotype. To be sure, a stereotype is a form of generalization, but by no means are they synonymous. In the former, one might focus on the commonalities, but they don’t define the subject. You know there’s more to the redhead than that he’s adorable. Stereotypes, on the other hand, and by design, ask you to not look beyond the stereotyped characteristic; they dehumanize.

I think maybe people think that stereotypes are okay as long as those stereotypes are casting positive characteristics on a group of people.   Why would anyone be offended to be told that their kid is seen as “happy” and “loving”?  Think about other stereotypes that are supposedly positive:  “Black people are such great athletes,” or “She must be a good cook, she’s Italian!” or “Women are so nurturing,” or “Boys are really good at math” or “Gays are such good decorators.”  Nobody gets away with those kinds of views anymore.  So why is it okay when you’re talking about people classified by disability?

How would these fly:  “I love epileptics!  They’re so down to earth.” or “Diabetics are great!  They have such great senses of humor.”  or “Cerebral palsy people are so awesome!  They’re such nature-lovers” or “Fat people are so much fun to be around!  They’re so jolly and they always know where the good food is!”

Any time you stuff an entire class of people into a narrow, rigid box, it’s wrong.  It’s hurtful, and it’s offensive, and it strips them of their humanness and individuality.  It’s really just a way of people dealing with their own feelings of discomfort about people who are different from them.  It’s arrogant and presumptuous to think you have someone pegged based on one aspect of their humanity.  When people say things like “I love Downs kids!  They’re so loving and happy!” what I really hear is “I don’t need to bother getting to know your little boy or seeing him as an individual, because I already have him all figured out!”

How would that feel to you?  If it were you or your child being stuffed into a box like that?

I’m not even entirely sure where these stereotypes about Down syndrome come from.  There might be truth to the impression people have about kids with Down syndrome being happy and loving, but the same can definitely be said about typical kids, too.  A lot of kids – whether they have Ds or not – are happy and loving.  And some are not.  (I keep thinking about that mom who is a special ed PE teacher . . . I wonder if she’s ever stopped to wonder what her “Downs kids” think of her.  Maybe some of them think she’s annoying.  I wonder if she’s ever considered the possibility that they even have the capability to form impressions and opinions like that.)  Maybe Down syndrome still makes people so uncomfortable that they respond to this discomfort by focusing on characteristics that are really present in the general population, but that somehow make them feel better about their discomfort about Down syndrome.

As for Finn, well, in a lot of ways he’s a typical three-year old.  In this ongoing science experiment I’ve been engaged in called Child Rearing for the last almost 15 years, I’ve had the opportunity to observe at close range five other three-year-olds before him.  Is he loving and happy?  Sometimes.  He’s very affectionate with his family, that’s for sure.  Is he indiscriminately loving and affectionate with strangers?  Absolutely not.  And all of my kids have been pretty affectionate with their family, so I absolutely don’t chalk that up to the fact that Finn has Down syndrome.  He’s not extraordinarily happy, or unhappy.  He’s certainly not mindlessly cheerful.  He can throw a mean tantrum, and is very adept at both experiencing and expressing displeasure.  He throws things he doesn’t want, and he screams when he gets mad.  He whines and does the “limp noodle” thing when he doesn’t want to go somewhere.  Yes, he can be a pain in the ass, my sweet little Downs boy.

Anyway, I’ve probably belabored this more than advisable; people are going to see things the way they want to see them.  I just want my kid to be seen as a unique individual, that’s all.


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