Tag Archives | Down syndrome

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.

 

3

Miscellany

Hello there.  I’ve missed you all, too.  Life is busier and I am more frazzled than ever.  Here’s a rundown on the newsworthy and the not newsworthy:

Homeschooling has become pretty much a full-time job.  In fact, Michael even said to me recently, “Wow, it’s like you have a full-time job.”  (Because, you know, I was living a cushy life of leisure before I started homeschooling.)  It’s not that our school days last all that long; in fact, we still almost always finish up by lunch time.  It’s that I spend so much time thinking about it and worrying about it and reading about it and trying to figure it out.

I’ve become a lot more relaxed about curriculum and lessons – I wouldn’t say that we’re unschooling exactly, but probably a hybrid of unschooling and relaxed schooling –  and the girls are becoming more independent and self-directed in their learning, although Lilah still needs quite a bit of help and input, and the program we’re using to address her dyslexia involves formal daily lessons and exercises.  For the most part, the girls and I talk about goals, we have a loose schedule hanging on the refrigerator which they consult, and they pretty much run with it, and I feel like my role is more and more of a guide or consultant.  And sometimes a moderator, because let’s be honest: put a handful of kids together day after day and they’re bound to get on each other’s nerves, antagonize each other, and vie for attention. But that’s just siblings, homeschooling or not.  Also, Annabelle continues to challenge my patience and stamina, as she has since toddlerhood.  She’s the clown, the goof ball, and the least cooperative in all things.  She and I butt heads a lot, which saddens me.  Sometimes I see my relationship with her fulfilling my worst fears about having a daughter – but that’s fodder for a whole other post.

I’m still trying to find a groove with Finn.  I don’t feel that unschooling can really work for him, because he is absolutely not self-directed.  He would be content to play on his iPad all day, every day, maybe for the rest of his life.  He’s curious about the world around him to a degree, but he has no innate interest in or motivation to learn to read or count or write or any of that boring stuff, nor does he have any concept of the value of those things, so educating him is a whole different ball game than educating his typically developing siblings.  I have to be very deliberate in teaching him, and I have to find ways to do it that are interesting and palatable to him, and right now I really have my work cut out for me because I think the last few months of school really tweaked him and turned him off to the whole idea of sitting down and learning.  So we’re taking it slow, and sometimes I feel a little panicked because I feel like we have so much lost ground to make up, and so much new ground to cover.  So I have to stop periodically and take a deep breath and remind myself that all we have is time, and there is nobody and nothing we need to catch up to.I’ve taken up knitting.  This isn’t news if you follow me on Instagram or Facebook.  Anyway, I’ve wanted to learn to knit for years and years (and I still want and plan to learn to crochet), and I finally bought some yarn and knitting needles and an instructional book for beginners (which didn’t help much; I find that I learn much better by watching, so YouTube videos have been awesome), and began with a scarf for myself in my favorite color:IMG_1226knits

Since then I’ve knitted a couple more scarves and hats, but I want to move on to some more complicated projects.  I love it, I really do.  It’s very Zen for me.  After the kids are in bed, I climb into bed and knit while I listen to a book on Audible.  A girlfriend (who is a longtime knitter) and I have started getting together at each other’s houses on Friday nights and knitting together over drinks.

Michael was gone for most of last week, in Portland taking the Oregon bar exam.  That’s right folks – this whole moving to Oregon thing may really happen.  It’s exciting and scary as shit.  But first things first: bar results will come out in a few weeks.

I am having a hysterectomy in less than a month.  I’m sure, being the over-sharer that I am, that I’ll write more about it as it gets closer, but for now, I’m having a lot of mixed emotions about it.  It’s all part of improving my quality of life (I pee myself constantly.  I’ve had seven babies, yo.  It takes a toll on a body), and that part I’m looking forward to, but gosh darn it, I’m pretty attached to my womb.  We’ve been through a lot together.

There are other topics flittering around in my head that I want to put words to here sometime soon, but for now, this is the nitty-gritty.

Until next time …

13

Footnote

As a footnote to Finn’s school saga, I contacted his former teacher (and cc’d the principal) earlier this week, inquiring about Finn’s classwork.  Nothing had ever been sent home with him – not a single writing assignment, coloring page, or art project.  Nothing.  I had been aware of it as the weeks and months wore on, but I guess somewhere in the back of my mind I kept expecting a big pile of stuff to come home with him.  But nothing ever did – not even when I officially requested his cumulative student record when I pulled him from school a couple of weeks ago.  So I sent an email earlier this week briefly explaining that nothing had ever come home with him and asking that any and all of his schoolwork be gathered together and left in the front office for me to pick up.  It took twenty-four hours to receive a response, and it was from the principal and not the teacher.  It informed me that Finn’s classwork was ready to be picked up in the front office.

I picked it up yesterday.  There was a fair amount of stuff – not nearly as much as you would expect from half a school year from a “typical” first-grader, but a fair amount.  Stuff dating back to the beginning of the school year.  A pumpkin art project obviously from October.

And this little gem, with my annotations:

School Rules

I’ll be honest: I don’t much care about the actual contents; it’s water under the bridge at this point (and most of it was worksheets that his aide had clearly had a big hand in doing).  It was the principle of it: why the fuck hadn’t his work been being sent home with him all along?  Why wasn’t he treated like a student instead of a problem?  I wanted to force their hand and get an explanation.

None, of course, was forthcoming.  I responded to the principal’s email asking her why Finn’s work had not been sent home at regular intervals all along, and asking if they ever had any intention of making sure we received his work, since it took me pointedly asking for it two weeks after he was disenrolled in order to actually get anything.  No response has been forthcoming, and I have no doubt that none will.

So, I’d just like to say to anyone who has ever hassled me for not falling all over Teacher Appreciation Week, for not buying into the whole Teachers Are Martyrs and Saints mindset: piss off.  We’ve had our share of negative, and even downright painful, teacher experiences.  Some teachers are truly wonderful – we’ve had those, too.  And some are damaging, or at least complicit in a system that is damaging.

So, I wash my hands of it.  I know that I need to find a way to let go of my anger and disappointment and move on, and do the things for my kids that school couldn’t or wouldn’t.

8

When Inclusion Doesn’t Work

I’ve taken this whole thing with pulling Finn from school much harder than I anticipated I would.  I spent the better part of last week in a funk, feeling very much like I was grieving.  This isn’t how it was supposed to turn out, and I am bitterly disappointed.  More than any of my other kids, I really wanted school to work for Finn because I believed that the seeds of inclusion for life in the larger community would be planted at school.  While my feelings about conventional school have changed greatly over the last few years, the fact remains that most kids spend their formative years in school, and the people Finn will be adults with are people who are children in school now.

One of the things that bothers me the most is that now that Finn is no longer in school, I think in many people’s minds he will just go down in the annals of “See?  Inclusion Doesn’t Work.  Kids With Special Needs Don’t Belong in Regular School With Regular Kids.”  Even the handful of moms whose kids went to school with Finn whom I’ve reached out to, just to let them know that Finn won’t be at school anymore – I know I’m assuming a lot here, but I have little doubt that they probably are of the mind “Well, it’s unfortunate, but not surprising.”  In other words, I think most people still don’t expect “special” kids to be in regular classrooms.

I wanted to blaze trails – or if not that, then at least make things easier for the next kid with an intellectual disability who comes along to this school in this district and who demands his or her rightful place in the general population.  But now, Finn’s case will just be more useful for the district and the school to resist inclusion.  They can continue to pat themselves on the back for having that really great program for the autistic kids – you know, “Project Success,” where they stick the kids with autism in a portable classroom out on the back forty – as far away from the hub of the school as you can get (true story, this).

Here’s what I want people to know: Finn’s inclusion didn’t work because the system failed him.  Because the adults who run this racket failed him.  The school district failed him, the school failed him, and yes, his teacher failed him.  And I will go so far as to say with conviction that in the vast majority of cases of inclusion not working, it is the failure of the system, not the child.

I am resentful that from the start, when Finn transitioned to the school district at age 3, the school district did everything possible to throw up roadblocks and make it as miserable an experience as possible.  I am angry over the thousands of dollars we spent on legal fees to get Finn’s basic legal rights honored by the school district, over the countless hours of meetings, of the volumes of letters and emails that went back and forth between us and the school district, of the fucking games the school district played including outright lying to us.  I am sick over the fact that in two and a half school years in public school, less than half of that was a positive experience.  TK sucked, mainly because the teacher didn’t know what to do with him and largely saw him as a problem.  Kindergarten was a dream, because the teacher believed in Finn, believed in his value as a human being, and was committed to everything inclusion means.  And first grade sucked, because again, Finn got a teacher who didn’t know what to do with him and largely saw him as a problem.

In one of the last communications I got from Finn’s teacher, she complained to me that “He has been playing with his long sleeve shirts a lot by pulling his arms out of his sleeves and lifting his shirt up.”  This, of course, was not the only problematic behavior he exhibited at school, but seriously, why was this even worth mentioning?  How many other first-grade boys are engaging in obnoxious or annoying behaviors like that?  And do their parents get to hear about it?  Was it hurting anyone?  Perhaps it was a distraction to the other kids.  I ask again: how many other first-graders are engaging in obnoxious or annoying or distracting behavior?  But for Finn, everything was scrutinized and deemed a problem.  This was a clear illustration of the teacher expecting Finn to accommodate everyone else rather than being afforded simple accommodations like overlooking odd behaviors that weren’t hurting anyone.

Please, spare me the sad song about how hard teachers have it.  You know what’s hard?  Being a kid with a disability in an ableist world.  Being a kid with a disability in an ableist school, in a school that would rather see you safely stowed away in a segregated classroom where you won’t bother anyone.  Being a kid with a disability in a classroom with a teacher who sees you as a problem to contend with.  That’s what’s fucking hard.

We could have stuck it out.  We could have kept fighting the good fight instead of giving up.  But the thing was that all I saw ahead of us were years and years of this shit.  Years and years of meetings and reports and paperwork and fighting with school districts and schools and teachers.  And maybe having a good year sprinkled here and there, but mostly the constant struggle of trying to get his needs met, trying to make people get it.  And meanwhile, his childhood is going by, and it’s time that will never be gotten back.

And I just couldn’t do it anymore.

And, yeah, I’m bitter.

But we pick ourselves up, and move forward.  We adjust to a new plan.

For the time being, I’m keeping homeschooling very low-key with Finn.  In truth, he still doesn’t understand that he’s not going back to school.  He still asks about it.  It was part of his routine, what he was used to.  And with the upheaval of him getting so sick and being in the hospital the first week he was out of school, we’ve barely dipped our toes into anything schoolish.  He has no IEP now, nor any ISP (Individual Service Plan, whereby homeschooled children with disabilities can still receive certain services, like speech therapy, etc., through the school district), which means we have no set educational goals, and he won’t receive any therapies.  I am completely okay with that; this was our choice.  I’ve never been big on therapies anyway, and I’m washing my hands of this school district (Joey will soon finish eighth grade and that will be that).  I filed a PSA (Private School Affidavit) with the state this school year, so I’m homeschooling the kids completely independently and autonomously – exactly how I want it, thank you very much.  We’ll figure it out.  I want to focus on the basics with Finn for now – reading, printing, counting – and we’ll take it from there.  Mostly, I want to build up his confidence and self-esteem, and undo the damage that school did to him this year.

Field trip to the arboretum

Field trip to the arboretum

Letter sent disenrolling Finn from school:

Screen Shot 2016-02-08 at 10.33.31 PMScreen Shot 2016-02-08 at 10.33.46 PM

11

Ableism and Inspiration Porn at School

Following is a letter I sent to various parties at Joey’s junior high school, as well as to the District Superintendent and the District Director of Special Education, in response to a choir concert held last week in which the choirs from all of the junior high schools in the District took part.  I am posting it here to preserve it, and to raise awareness of the fact that our schools and our society are still rife with prejudice against the disabled.  So often, prejudice manifests in subtle ways, in ways that are generally seen as benevolent – but make no mistake: prejudice in all forms does damage.

*****

Dear *,

I’m writing to express some deep concerns regarding the * choir performance at * Auditorium last Friday evening. As you know, our eighth grade son, Joey, is in advanced choir. I was not able to attend the performance, but my husband and my older son did, and I did see a video of the performance I am writing to you about, which was the performance of “I Am His Child” by the Advanced Women’s Ensemble and Special Guests.

While I have no doubt that the intentions behind that performance were good, it was disturbing for several reasons. The first thing that raises concerns was the introduction. I believe it was you, Ms. *, who introduced the performance by telling the audience that something “magical” had been happening at *, and then going on to say that Ms. * had been working with her own choir students and students from *’s Special Day Class, and that they would now be performing.

At first blush, it may be hard to see why this would be problematic. However, none of the other performances got special introductions. Why did this one? Why was it necessary to identify this as different from or more special than any of the other performances? Why was it necessary to call attention to the fact that some of the students performing this particular song were from the SDC? Rather than being unifying, this is divisive; it only serves to further “other-ize” kids with disabilities.

Second, what exactly was “magical”? That Ms. * deigned to work with the kids from the SDC? That the “regular” kids spent time with the kids from the SDC? That the kids from the SDC could actually learn a song? I doubt any of this was in anyone’s conscious thought process, but it is, in fact, the message that is perpetuated.

To offer some context, imagine that this was fifty years ago, and some children from the segregated black school were allowed to perform at a concert with the white children, and imagine that performance being introduced in the same manner: calling it “magical” and calling attention to the fact that it’s a big deal that the “other” children are performing with the “regular” children. How does that feel?

There is a term used within the disability community, and it is “inspiration porn.” Inspiration porn refers to incidents in which people with disabilities are objectified in such a way as to allow non-disabled people to feel good and even applaud themselves and/or each other for merely behaving in ways that decent, compassionate human beings should behave in – for instance merely being kind or inclusive, which should not be worthy of special attention or recognition. Sadly, the way this performance was introduced smacks of inspiration porn, and that is ableist.

Aside from the choice of song being blatantly religious in nature, and therefore wildly inappropriate for a public school choir performance, the most disturbing thing of all was that particular song. Here are the lyrics:

I may not be all that you are,
I may not be a shining star,
but what I am
I thank the Lord
for making me His child.
Thank you Lord for hearing ev’ry prayer,
Thank you Lord for just being there,
Thank you Lord,
for I am not worthy of your Love.
I may not be, …

So don’t use me or abuse me,
for I am His child.
Don’t tease me, or mistreat me,
for I’m still His child,
you can even talk about me.
But I’m still His child.

I’m not sure I can even express how this makes me feel, as the mother of a child with a disability. You see, Joey’s younger brother has Down syndrome, and I have spent the last seven years, since he was born, waging a battle against ableism, segregation, and prejudice based on misconceptions and stereotypes. I can’t figure out why anyone would choose a song with those lyrics for kids with disabilities to perform. Aside from the religious nature of the song, it is filled with messages of inferiority, helplessness, victimhood, and weakness. It’s not edifying in the least. Paired up with kids with disabilities, it perpetuates ideas that kids with disabilities are unworthy, broken, sad specimens who deserve pity and charity. It did not build anyone up except the non-disabled people present; it only tore down the kids from the SDC and further marginalized them.

Again, I have no doubt that the performance was undertaken with the best of intentions, but it was sorely misguided, and sadly, it accomplished exactly the opposite of what you were probably trying to achieve. It would have been far better to (a) choose a different song, one that was just fun and didn’t attempt to convey any sort of message about the kids performing it, and (b) have the students perform without any special introduction, especially one that drew attention to what made them different or “special.” Being inclusive should not be noteworthy.

As the parent of a child with a disability, I would be remiss if I did not reach out to you about these concerns, and it is my hope that you will take them to heart.

Respectfully,

Lisa Morguess

9

Finn’s Big Adventure

We had quite an upheaval last week; Finn was a very sick little boy and ended up in the hospital for a couple of days.

It all started last Saturday.  I noticed in the morning that he had some faint pink patches on his face.  I didn’t think much of it, as he often gets patches of chapped skin on his face.  By later that afternoon, however, the patches had grown bigger, darker, more defined, and slightly raised.  My first thought was that he was having an allergic reaction to something, but I couldn’t think of anything new or unusual that he had been exposed to.  He was acting as if he felt fine, so I wasn’t overly concerned.  I did post a couple of photos on FB out of curiosity, though (which may have been a mistake).  The general consensus on FB was that he was either allergic to something, or he had Fifth Disease.  I didn’t think it was Fifth, as I’m pretty sure he had that already a few years ago.

Saturday afternoon

Saturday afternoon

Saturday night he had a low-grade fever of 99.1.  I gave him Tylenol and put him to bed.

He vomited several times during the night on Saturday, and Sunday morning his fever had spiked to 104.3.  The red patches had also spread, and the left side of his face was puffy.

finn0124

Michael and I took him to the ER at the hospital right up the street.  After examining Finn and asking us about his symptoms, the ER doctor concluded that he had some virus that just needed to run its course.  He didn’t think any tests were necessary, and didn’t think we should be overly concerned.  We were advised to alternate Tylenol and Motrin for his fever, and that was it.  So we went home, and that’s what we did.

Although he didn’t vomit anymore after Saturday night, his appetite diminished and his fever went up and down, and by now, he clearly didn’t feel well.  He mostly just laid around on the couch or on our bed.

Meanwhile, Michael had booked a cabin up in Big Bear.  He was planning to take the three older girls up there for a couple of days to take snowboarding/skiing lessons.  They were supposed to leave Monday morning and stay until Wednesday.

Monday morning, Finn’s appearance was alarming.  The entire left side of his face was swollen, and his left ear was like a fluffy little pancake.

Monday morning

Monday morning

I had Michael take him back to the ER.  Again, the conclusion (by a different ER doctor) was that Finn just had a virus that would pass in time.  By now I was a little frustrated that nobody seemed to be more concerned, and that they didn’t even run any tests.  And of course by now, my FB feed was exploding with theories and horror stories about strep and Kawasaki disease and all kinds of other scary stuff.

Michael went ahead and left town with the girls.  I wasn’t totally comfortable with this, but the fact was that we had taken Finn to the ER twice, and both times had been told that Finn was fine.

By Monday night, Finn looked like this, and I was freaking out:

Monday evening

Monday evening

Finally, I decided screw this, I’m not messing around with the regular hospital, I’m taking him to the ER at the children’s hospital.  So I left Kevin with Scarlett and Joey, got Finn into the car, and headed to CHOC.  When we got there, he waiting room was packed – standing room only.  They took one look at Finn, though, and took him right back.  His temperature was 103.5, so they dosed him with Motrin right away.

I should stop here and explain to you about Finn’s absolute terror of doctors, doctors’ offices, medical equipment, and the like.  I don’t know where this fear of his comes from – it’s really hard to say.  Yes, he had to undergo quite a few unpleasant medical procedures when he was a baby, but I doubt he remembers those, and anyway, this terror really didn’t begin to manifest until he was probably around four years old – and by then, it had been a long time since he had undergone anything painful or traumatic.  So, in a way, it’s like it came out of nowhere, but the level of his fear is absolute, unbridled terror.  Every doctor appointment, every dentist appointment, every ophthalmologist appointment is an ordeal that involves screaming, flailing, crying, and him having to be basically held down.

So, imagine what an emergency room visit might be like for him.  And now, imagine what it would be like for a child with that level of terror to be put on a gurney and have dozens of doctors and nurses coming in and examining him, putting a thermometer under his arm repeatedly, putting a blood pressure cuff on his arm or leg repeatedly, putting a pulse oxymeter on his finger or toe repeatedly, sticking a tongue depressor in his mouth and looking at his throat repeatedly, shining a light in his eyes repeatedly, and then holding him down and placing an IV in his hand and then wrapping his arm and hand up in a splint so he couldn’t pull the IV out (which he almost managed to do anyway; it was a bloody mess and had to be redone a few hours later).  And then imagine being told that he needed to be admitted, which meant that child was going to have to somehow cope with this for a long while.

It was pretty much hell.

Finn and I spent fifteen hours in the ER, because even after I was told that he needed to be admitted, there were apparently no beds available.  In the ER, they gave Finn a steroid (orally), as well as Benadryl every four hours.  It did not seem to help the swelling.  He also got a unit of antibiotics intravenously.  His fever never returned after that, but that may have been coincidence.  They had given him Versed to calm him before they placed the IV (it didn’t seem to calm him).  Finn finally dozed off at some point, and slept for an hour or two, but then woke up screaming, and he screamed relentlessly for the next couple of hours, until I begged them to give him something to calm him.  They then gave him a dose of Ativan intranasally.  After awhile, he dozed on and off, fitfully, with me squeezed next to him on that awful gurney.  I woke at some point, soaked in his pee.

I had talked to Michael during the night, and he packed the girls up first thing in the morning and headed back from Big Bear.  Finn was finally moved to the overflow unit from the ER late Tuesday morning.  We were told that there were still no beds on the floor available.  Michael got to the hospital a little before noon, and when I heard his footsteps from across the unit, I swear it was like this giant weight being lifted.  I left for a few hours, went home and showered and saw to the other kids, grabbed some things for Finn, and went back to the hospital for a couple of hours.

Tuesday evening

Tuesday evening

Finn was finally moved to a bed in a hospital room that night, twenty-four hours after he and I had first arrived at the ER.  Michael spent that night with him, and I went back to the hospital Wednesday morning.  By that time, the swelling in his face had finally begun to lessen, and he had been fever-free for over twenty-four hours.

Wednesday morning

Wednesday morning

We still didn’t have any answers, and honestly, once he moved out of the ER and into the overflow unit, he was only being observed and not treated, although they ended up drawing blood three times and running labs, as well as taking viral swabs from his throat and nose, and checking his urine numerous times.  When he went into the ER, he had a fever of over 103 degrees, he was spilling protein in his urine, his white blood cell count was extremely elevated, as were his inflammatory markers and CRP level.  All of this pointed to some sort of infection, but they were unable to pinpoint what type of infection.  Everything they screened for was negative, so they ruled out a lot, but couldn’t figure out what he did have.

By Wednesday afternoon, his white cell count and inflammatory markers had improved enough that they discharged him.

Late Wednesday afternoon, going home!

Late Wednesday afternoon, going home!

They concluded that he had caught some weird virus that they were not able to identify, and had a severe allergic reaction to it.

Finn was glad to be home – and his brothers and sisters were so thrilled to see him get out of the car in front of the house – but the whole ordeal had taken a toll on him.  It was all very traumatic for him, despite the fact that everyone in the ER and the hospital was incredibly kind and compassionate and patient.  They really were just awesome – could not have asked for better care.  The next couple of days were rough for Finn – he was very out of sorts, very tearful and clingy and prone to angry and emotional outbursts.  The swelling is completely gone now, and his face and ears are still peeling.  He’s more back to his old self now.  We had a follow-up visit with his pediatrician on Friday, and he seems to agree with the hospital’s conclusion about a virus and an allergic reaction.

Thursday morning

Thursday morning

Friday morning

Friday morning

Even though I guess the first two ER doctors ended up being right, I’m still glad that I took him to CHOC, and that they diligently investigated.

This whole experience has made me very conscious of and grateful for Finn’s overall good health.  In the gamut of things, this really was a minor blip.  There are kids out there who experience far more serious illnesses and health problems, and who spend far more time in the hospital and undergoing all kinds of traumatic medical procedures.  Generally speaking, Finn is a very healthy little boy who has no chronic health issues.  We’re very fortunate.

In the end, Finn’s illness is a mystery, but all’s well that ends well.

 

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Another Casualty, A New Adventure

After months of problems at school, months of repeated meetings, and months of agonizing, we made the decision yesterday to pull Finn from school.  Yesterday was his last day.

As I said, it’s been months of shit, to put it bluntly.  But yesterday in particular, a couple of things happened that were the final straws:

As I walked Finn to school yesterday morning, the whole way he recited, “No screaming.  No hitting.  No spitting.  No running.  No throwing.” And on and on.  And something just broke inside me.  All he associates school with, I thought, is being reprimanded, of being seen as bad.  He has completely absorbed that message.  I was ready, walking and listening to him, to bypass his classroom, march to the front office and tell them that we were pulling him.  But I restrained myself, knowing that I had to talk it over with Michael (I’ve been working on him about this for a while, but now push had come down to shove).  So I took him to his classroom and went home.

Later in the morning, the mailman knocked on our door.  There was a certified letter I had to sign for, and it was from the school district.  In a nutshell, the district was objecting to the consent form we returned to the school last month conditionally consenting to only some of the battery of triennial assessments, and declining others.  The district was essentially attempting to bully us into consenting to all of the assessments, on the district’s terms – despite the fact that parents are well within their rights to pick and choose which assessments to consent to.

Reading the letter, I felt both pissed and weary.  It was the same crap from our battle with the district three years ago.

And you know what?  I just can’t fucking do this anymore.  I can’t keep fighting a system that continues to make every goddamn thing an exhausting uphill battle.

And I can no longer in good conscience send my kid into an environment that is overwhelmingly negative towards him.

So I will now be homeschooling Finn.

Although I believe in homeschooling, I am scared.  I’m far from an expert in homeschooling (if there is such a thing), I often feel discouraged with what I’ve already taken on, and it’s all been so much trial and error so far.  How will that be for Finn?  On the other hand, it can’t be any worse that what he’s gotten at school this year.

In truth, I am angry that the system failed him so miserably.  I feel utterly defeated, too; we fought so fucking hard for inclusion.  So hard.  And it’s all come to this.  They win.  My non-conforming son is out of their hair.  I feel grief, too; we had such grand visions of how it might be for Finn at school – warmly embraced, lots of friends and support – and it’s come to naught.  It is especially painful in light of how wonderful his kindergarten year was last year – we got to see what is possible.  I’ve spent the day crying on and off, filled with anger and sadness.

So that’s it.  I’ll shake these dark feelings and keep moving forward.  Nothing else to do.

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Review & Giveaway: Hasbro Toybox Tools

Hasbro – you know, the toy company that’s been around forever and is the maker of some of your favorite games and toys from childhood – launched an initiative in 2014, in partnership with The Autism Project, to “bring the joy of play to children with developmental disabilities” through their Toxbox Tools program.  What Toybox Tools really is, in a nutshell, is supplemental materials, like visual cues and instructions and printable playbooks that can help guide play experiences, making many classic Hasbro toys and games more accessible to children with developmental disabilities.

I was contacted by a representative of Hasbro and asked if I would be interested in checking out a Hasbro game from the Toybox Tools initiative, giving it a whirl with Finn, and writing about my thoughts.

We received the Chutes & Ladders game, which has been a well-loved game by all of my kids when they were very young.  I’ll be very honest and say that I really haven’t attempted any board games with Finn, because even the simplest ones seem like they’d probably have too many concepts to grasp for him, and I’m not keen to set him up for frustration.  Probably my bad.  Needless to say, I really love the idea of making regular games and toys that so many children have enjoyed for generations more accessible to Finn.

So, the Toybox Tools version of Chutes & Ladders is, I assume, the same as the latest version of the regular Chutes & Ladders, but with a packet of visual step-by-step instructions to use to explain how the game is played.  There is a set of very simple instructions for basic play (just spinning the spinner and moving the pieces accordingly up the board, ignoring the chutes and the ladders), and an expanded set of visual cues and instructions for more complex play.

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These visual cues and instructions are an excellent mode of explaining the game, not only for children who respond more readily to visual cues, but as reinforcement for kids like Finn who have decent receptive language skills.

Finn enjoyed the game, although he’s not yet quite grasping that when you land on a square with a ladder, you get to climb to the square at the top of the ladder, and if you land on a chute, you have to slide down.  We’ve only played a couple of times, though, and I think with practice he’ll get it.  Even in “basic play” mode, it’s good counting and number recognition practice, as well as practice in taking turns.  Even the spinner and moving the pieces around the board offers some fine motor skill practice.  Most of all, it’s just a nice way to share something fun together.

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The only thing about this particular version of Chutes & Ladders I think could be improved is the graphics of the game board.  The bright colors are terrific, but the game squares are very undefined, so it took a few moments to figure out that there actually are squares on the board, and for kids with developmental disabilities, I wonder if clearer definition to the graphics of the game board would be helpful.

In any case, I give Toybox Tools a big thumbs up.  I think Finn and I (and Finn and his siblings) will continue to play Chutes & Ladders, and I’m going to check out some of the other Toybox Tools games and toys as well.

If you’re interested in receiving a FREE Toybox Tools game or toy, leave a comment below, and I’ll choose two lucky winners in a week.  (Please only leave a comment if you have a child with a developmental disability to give the toy or game to.)

Born This Way: My Initial Thoughts

TVTV07FwebThere has been a lot of buzz within the Down syndrome community on social media lately about a new docu-series called Born This Way, which follows seven young adults with Down syndrome.  The show premiered on A&E yesterday.  I will be honest and confess that I wasn’t going to watch it.  It’s hard for me to explain why but … I so often find myself outside of the “mainstream” of Down syndrome parents (and so many other things!), that the more something is hyped, the more I tend to want to steer clear of it.  But I was urged by a couple of friends whom I genuinely respect to watch it and share my thoughts, so here they are:

First, I was happily surprised to see in the opening scene two young men with Ds walk into a pub that is literally a few blocks from my house.  I’ve been there numerous times.  I had no idea that any sort of reality show was being filmed in my town.  The series takes place mainly here in Southern California, in various locations throughout Orange County and L.A.  Anyway, it was cool to see two dudes with Ds enjoying a beer in a pub.

The series premier introduces us to the seven young men and women who have Down syndrome.  They include Megan, who has lived in Denver since she was born, but who dreams of moving to L.A. to be a film producer (this video of her went a little bit viral on social media a couple of years ago); John, a rapper; Steven, who has Mosaic Down syndrome and who works as a dishwasher at Angel Stadium; Rachel, who I believe is the oldest of the group at 32, who describes herself as “boy crazy”; Sean, who is a self-described “lady’s man” and is the subject of Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion (which I reviewed here); Elena, born in Japan, and facing the most difficult struggles of the group with regard to self-acceptance; and Cristina, the peace-maker of the group.

One of the first things that jumped out at me was, “Where are all of their non-disabled friends?”  I understand that this is a show focused on Down syndrome (which I appreciate, and I think it’s high time), but I couldn’t help wondering if it’s true that adults with Down syndrome, despite what may be Herculean efforts for inclusion during their childhoods, end up being surrounded solely by other people with Down syndrome in their adulthood.  It’s not that I see that as a bad thing – at least not totally.  I get that human nature drives us to seek out people like ourselves, because it is among those most like us that we tend to feel the most at home.  It just makes me wonder about the point of inclusion.  Isn’t it so that everyone has a place of belonging in a diverse community – both with disabled and non-disabled peers?  Or is the point really just to destigmatize disability and teach tolerance in an ableist society?

Speaking of abelism, there is plenty of that in this show.  It saddens me that even within the Down syndrome/disability “community,” we continue to measure people with an ableist yardstick, valuing people based largely on what they CAN do.  I understand the need to break down the barriers that have always existed with regard to disability – and specifically intellectual disability – where the focus has always been what they CAN’T do.  I get that we are trying to promote a more positive perception of people with disabilities/ID.  But I often feel like that agenda is misconceived.  The fact is, there have been and always will be people in the world who CAN’T do certain things.  Every single person in the world has their own personal list of things they CAN’T do.  We all have limitations.  Why does that have to be a bad thing?  Why does “limitation” have to be a bad word?  No, we are none of us capable of everything.  We are all of us capable of some things.  I feel like a better message to promote is that it doesn’t matter what someone is capable of or what they’re not capable of – we all are worthy of respect, compassion, dignity, and opportunities, solely because we are human.

Which leads me to another point prominent in Born This Way, and in the Down syndrome community at large, and that is independence.  The notion of independence is held up like the holy grail in Down syndrome parenting groups: everyone wants to see their kid grow up to be “independent.”  I’m sure that means different things to different people, but it often seems to comprise visions of our kids with Ds growing up and getting married and living on their own.  And I’m not saying that those things aren’t possible, but the truth is that they are rare.  Marriage for people with Ds/ID is becoming more common, but the vast majority of adults with Ds/ID will need lifelong adult help, supervision, and guidance.  In other words, very, very few will ever have the capacity to drive or live completely independently.

Again, I wish this were not perceived to be such a negative thing.  Rather than pushing for independence, I personally am way more in favor of pushing for autonomy.  I highly doubt that Finn will ever be able to live independently (and I wholeheartedly accept that), but I want very much for him to have autonomy – the ability to pursue his own happiness, make his own choices, express his own thoughts and feelings, and get his needs met.

There was a scene in the show where Elena becomes very upset with John because he keeps saying that she’s “crazy.”  Elena doesn’t appreciate being called “crazy” – it hurts her feelings.  When she expresses this to John, he explains that he “doesn’t mean it that way,” and is “just joking.”  Sound familiar?  It’s interesting me all the cross-prejudice that exists in the world.  These are the same exact typical responses one hears when addressing the use of “retard,” or “retarded.”  “I didn’t mean it like that,” you’ll hear.  Throwing around “crazy” is ableist because it demeans and marginalizes mental illness.  It’s really a matter of being informed and educated about these things, and obviously nobody has educated John about calling people “crazy,” so my comments here are not meant to be derisive of him, but rather just an interesting observation.

Elena, as I said, struggles the most with self-acceptance.  She was born in Japan to a Japanese mother and … I’m not sure about her father, but he’s neither Japanese nor American.  In any case, Elena’s mother acknowledges that it took her a good twenty years to fully accept Elena for who and what she is.  In Japan, any sort of disability is very much looked down upon and seen as something that brings shame on the family.  I don’t know how old Elena was when the family left Japan, but she has clearly been profoundly affected by her mother’s struggle to accept her.  You really can’t hold it against the mother, though, as we are all products of our cultures.  It’s just a very tragic reality, and a stark reminder of how deeply parents’ acceptance/non-acceptance of our children shapes their self-image and self-esteem.

At least one person I know (also the parent of a young child with Ds) expressed some doubt about how realistic this show is.  I disagree – I felt it was very realistic and authentic, and didn’t get a sense of it being scripted or staged.  However, the individuals chosen for the show are obviously “the cream of the crop” as far as Down syndrome goes.  These young adults are all “high functioning,” attractive, healthy, and well-spoken.  There are no non-verbal, medically fragile people with Ds on this show, and one parent of one of the individuals with Ds comments (maybe in the preview for the next episode – I can’t remember) that an expectant couple with a prenatal diagnosis might watch this show and hopefully see all the possibilities.  Again, a well-intended comment, but an ableist and misguided one, I feel.

So, you may ask: what picture of Down syndrome would I wish to promote?  Honestly, I don’t have a simple answer to that.  I just know that only promoting “the cream of the crop” only serves to further marginalize and dehumanize those who don’t reach that artificial ideal.  I wish we could present a more balanced picture of Down syndrome, and promote compassion and belonging for all.

All of that said, I did enjoy the show, and I do plan to watch the rest of the series.  I am interested in how the stories unfold, and how the relationships between these individuals continue to develop.  I think the relationships and interactions between them were what I most enjoyed.  There is ribbing, and negotiating, and arguing, and peace-making, and compromising and hurt feelings, and confrontation, and contrition going on.  This moved me more than anything.  This is being human.

You can watch the full show online here.

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Good Things

Things seem to be looking up at school with Finn.  I’m not sure what to attribute it to – some positive strategies that are being used, or just plain time?  Maybe a combination.

Nevertheless, we are going to go forward with a Functional Behavior Assessment (FBA), and we’ve also requested that his triennial assessments, due this spring, be undertaken as soon as possible.  I despise the assessments.  I do not like my kid (or any kid) being evaluated and ranked on charts and compared and reduced to numbers.  However, every kid with an IEP has to go through a slew of assessments every three years in order to gauge what modifications, accommodations, and support are needed, and to assist in developing new goals.  In truth, I don’t even know if any new IEP that’s developed will be put into practice since there is a very good chance Finn won’t be returning to school here for second grade.  But, I suppose it’s better to have an IEP in place (which will follow us if we move out of state, assuming we enroll him in public school in Oregon, until a new one can be developed there) than not to, just as a safeguard for him.  Anyway, it seems to make more sense, if we’re going to do a FBA now, to just do all of the assessment now (and by now, I mean they probably won’t realistically take place until well after the first of the year) rather than piecemeal it.

We have consulted with both an advocate/friend who is extremely knowledgeable about SpEd law, as well as with our attorney, and they both offered some interesting insight which has driven our decision on how to move forward.  We still have an “informal” meeting scheduled for next week with the “team,” so that will be interesting.

Anyway, so yeah: it appears that Finn is coping better at school lately, his negative behaviors are diminishing, and he’s not being removed from the classroom as far as I know.

Another interesting development: the aide he’s had since the beginning of this school year has resigned due to family issues.  She’s actually been absent for a while, but now it’s official that she’s not returning.  Just from my own observations from the handful of times I was able to make observations, I’m not sure she was the best match for Finn.  She was very nice and seemed devoted, but she tended to coddle and baby him, and didn’t seem to know how to deal with his outbursts and obstinance.  So, Finn has had a series of substitute aides over the last few weeks.  One of them has been hired by the school to be his permanent aide, and she does seem like a keeper.  I met her today.  She’s down to earth, nice, but no-nonsense.  She also, on her own, came up with a way to help Finn transition from one task to another, and from recess to classroom, involving a Spiderman watch.  How cool is that?  I mean, really – if people could just stop for a minute and think outside the box just a little bit … the kicker, though, is that she has an adult brother with Down syndrome.  What does this mean?  Maybe nothing.  But I get the sense that for her it means that she’s not put off by any of Finn’s shenanigans, and I think that will serve him well.

Another good thing:

So, I’ve always assumed that Finn would learn about his Down syndrome pretty organically.  I’ve never thought it would involve us sitting him down at some point and making some big announcement to him.  We’re an open family and pretty much no topic is off the table – we talk openly about everything, including Down syndrome, so I figure that he’ll just kind of absorb it and eventually understand that he has Down syndrome.

At bedtime every night, I read a story to Finn and Scarlett.  Last night it was Finn’s turn to choose the story, and he brought me Hi, I’m Ben… And I’ve Got a Secret!  I had forgotten we even had this book – it’s one of the first books we got after Finn was born.  So, he brings the book into my room and climbs up on the bed with it, and Scarlett starts squealing, “IT’S THE FINN BOOK!  IT’S THE FINN BOOK!”  I was intrigued.  I pointed to the cover and said, “Who’s that?”

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Both Finn and Scarlett yelled, “FINN!!”

So, without even knowing it, they both recognize the telltale facial features and associate those with Finn.  I was surprised, and it honestly made me happy.

So, I’m reading the book to my rapt little audience, and we get to the part where Ben reveals his secret: that he has Down syndrome.  I said, “Ben has Down syndrome, just like you, Finn.  You have Down syndrome, too.”  “Yeah!” he responded.  Then I said “Down syndrome” slowly a couple of times, and asked him if he could say it, too.  Both he and Scarlett repeated it.  Then I said again, “Finn has Down syndrome, just like Ben has Down syndrome.  Finn, can you say, ‘I have Down syndrome’?”  He said, “Yeah!  Finn has Down syndrome!”

It’s hard to convey here all that that moment contained.  Although we’ve talked about Down syndrome endlessly over the years in Finn’s presence, this was the first time he was ever able to relate Down syndrome to himself.  I really don’t think he has any idea at this point what Down syndrome even means, but that’s okay.  What I’ve figured out over time is that I want him to know that he has Down syndrome, and I want him to understand what it means eventually.  I want him to own it.  “Hell yes, I have Down syndrome!”  I would love to imbue that attitude in him.  I never ever want Down syndrome to be something negative, something he wishes he didn’t have.

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