Please tell me at least some of you have watched
UglyDolls. If not, you should. First, it’s a cute musical (who doesn’t love
musicals?) and second, it has a powerful message about what it means to embrace
differences. For real, y’all, everyone can
use a good dose of UglyDolls. The cliff
notes version is this: there’s a toy factory making dolls and toys. When the quality assurance process in the
factory detects a toy that is “different”, it kicks it onto a different
conveyor that dumps it out into Uglyville while the toys that meet standards
are rolled out into the Institute of Perfection… let’s call this Perfectville
for the sake of this post. Anyhow,
Uglyville is a fun, vibrant, loving place and Perfectville is a place where
difference is shunned and shamed. Toys
from Uglyville make their way into Perfectville and really shake things up – in
the best way. Eventually (spoiler
alert), the towns become one and life is truly joyful for all. Inclusion… not segregation or even
integration… full inclusion brought love and joy and purpose and LIFE to both towns. I preface this post with an explanation of this
movie for a reason: this movie brought me to tears because of how parallel the
story is to what we experience every day.
First, let me say that nothing about our lives before Ellie was “perfect”…
but it wasn’t different, either… it was very vanilla. And nothing about Ellie (or others like her)
could ever be “ugly” in my book. I’m
using these because Perfectville here was the status quo… the “normal”; and
Uglyville was “different” in the most beautiful and wonderful way. Allow me to dive in.
Last year, we were stocking up on leotards and tutus,
fitting Ellie for teeny tap shoes and peach leather ballet slippers. That’s right, we had enrolled her in dance
class and we were about to jump into a whole new adventure with her. I posted so many times last year as I watched
her twirl and shake poms and ribbon dance her way into the hearts of the other
parents watching. Was dance class a
struggle? Absolutely. Did she get overstimulated and run away? Almost every class. She wanted to play with the barre or she wanted
a better view of herself in the mirror… or there was a cute baby in the
background that she HAD TO greet. Dance
class was hard and a big adjustment. Did
I leave sweaty from chasing her sometimes?
Yep. Did I just not go somedays
when I was an exhausted mom who just
couldn’t that day? Sure. But in the end, it was all worth it, like so
many other things parents whose children have special needs experience. The struggle is real, but to see your child
perform on that stage alongside her peers and see her absolutely rock that
recital – every stressful second was worth it.
After seeing my posts about Ellie in dance, two other little
girls with Down syndrome joined this class.
Let’s call them Miss K and Miss M.
Miss K was in dance for several months, but she wasn’t as thrilled about
it as Ellie was. She found that tumbling
was much more her thing and went that route.
Miss M came to class with Ellie for “bring a friend” day and she loved
it. Miss M enrolled in dance classes
this fall. I know Miss M’s mama very
well and we were both thrilled for this season to begin.
A few weeks ago, we received an email from the instructor
offering a separate dance class for our girls (Miss K, Miss M, and Ellie) where
they could get more one-on-one attention and more flexibility in structure. When I first read through the email, I
thought, “That is sweet of them… I know Ellie could have used a less
stimulating environment”. However… and
this is important… life is stimulating.
Ellie doesn’t have any severe aversions, here, and it’s important to me
(I speak for Brandon here, too) that she experiences life in the same way as
her peers. While I do think this smaller
class could benefit Ellie, I also know that she NEEDS that larger class. I countered the first email with an email
back stating that we could maybe work this out if 50% of the time was spent in
a separate class, but at least 50% of the time really needed to be with the “regular”
class, too. I knew this was a stretch…
but let me tell you what else happened in dance class last year. Remember me telling you about the other
parents watching? Some of them had three-
and four-year-old daughters which were sweet as pie to my Ellie. Those moms might have been watching their
daughters seamlessly interact with a girl who was different for the first
time. Those little girls became friends
of Ellie’s. There was one little girl in
the class who refused to interact with Ellie, though. When they’d circle up and Ellie would extend
her hand out to be held, this little girl would pull her hand away, sometimes
screaming or saying “ewww”. While this
crushed me, Ellie handled it just fine.
By recital time, this little girl was finally okay with holding Ellie’s
hand (y’know… nine months later). As
much as I wanted to pull my hair out over this, I recognize that this process
was important… that this little girl eventually DID see that Ellie was just
another little girl and didn’t have something she’d “catch” by holding her
hand. I digress. Anyhow, dance class was amazing because Ellie
loved it and because she was able to interact so fluidly with her peers.
About a week or so after I sent the email to the dance
instructor asking to still be included in the full dance class, I got an email
back last night. The email said that
this just wasn’t possible and listed all the reasons why these girls were not
able to be in a “typical” classroom.
Reasons like: they have to be potty trained, they can’t run around, they
can’t cry every class, they can’t run to mom and mom can’t call out to correct
them. Then the line that cut most deep: “If
she shows me that she is capable of not running around and paying attention to
her teacher, I can revisit this” in the future.
First, let me say that I think this instructor is trying her very best
to give the best solution for her whole class… she’s a nice woman and I do
think her heart is in the right place.
But here’s what is so wrong with this picture: I’m 99% sure that no
other 5-year-old has to prove herself to be included in a class. It would have been perfectly fair if she
would have said to me, “I don’t think Ellie is really ready for dance class
because she had a hard time paying attention and staying put”. That would have been very fair. But to say that Miss M and Miss K would be in
this “special” class together with Ellie was simply saying, “because these
three all have Down syndrome, I expect them to act like Ellie did and that was
too distracting for the other learners".
OUCH! I realize that a private
business has a right to include or not include at their will. I realize that having three runners in the
class would be challenging, but I can also say Ellie is the only runner in the
group. She’s also crazy outgoing –
something that maybe drew other girls to her last year. The idea that these girls would be in their
own class and perform at the recital alongside their teacher sends me into
tears. Can you imagine the auditorium
packed full of people when this group of three girls comes out with their
teacher to perform… all three girls have Down syndrome? I can hear the pitiful “awwwws” already. The teacher they were assigned was
fabulous! She worked directly with Ellie
a ton last year and she’d be great. But
putting all the “different” girls together in one class… in one recital
performance makes that entire audience of people think that these girls NEEDED
their “special class” and couldn’t be included with the rest of their age
group. That’s not acceptable. It perpetuates out-of-date stereotypes and
does nothing but further segregate our world.
I was helping Kaleb clean his room when I got the email and
quickly read it. Then I sat on a stool
and my frustrations began to well up in my eyes. He saw me sitting and wrapped his arms around
me. When he saw my falling tears, he
kissed my forehead and said, “Mommy, why are you crying?” I’ll be honest, I don’t break easily these
days. I told him I was sad. When he pressed harder, I had to collect my
words before telling him how I felt. I
said, “It makes me sad when people do not see your sister the same way you do,
Buddy. It makes me sad that they don’t think
she can do all the things that we know she can do.” He started saying something about how she’d
be okay and she’d make friends. I
stopped him and said, “But Kaleb, it’s not kids that I’m worried about… it’s
adults. We adults are the ones that have
a hard time seeing her as just a girl.”
More sobbing. When I felt strong
enough to really talk, I sent a text to my friend and fellow Rockin’ Mom (that’s
what we call ourselves as moms of kids with Ds). She called me right away and I cried into the
phone as I explained the situation to her.
I had to go outside while I talked, and I passed the garage where B was
getting in a workout (I was trying not to interupt him yet). He stopped the
treadmill and stood there looking at me until I hung up the phone. I recapped the whole situation to him, too –
more tears. He was instantly pissed… me,
too. As his eyes welled up with tears,
too, we talked about how we need to go forward.
For me, it’s writing out my feelings in a blog post… that’s how I
vent. I’ll have lunch with Miss M’s mama
today and we’ll discuss our feelings there, too. Right now it’s just a lot of hurt and
disappointment.
Remember what I said about Uglyville and Perfectville
earlier? The only time both communities
experienced full joy, compassion, opportunity, and love was when they merged
together. We each have something
valuable to offer one another. We each
fill a niche that is vital to the common good.
If we push all of the “not vanilla” into one corner so that our lives
can move at a faster pace, we miss out… on A LOT. I can post a thousand different research articles
on how inclusion benefits both the typical and non-typical learner short and
long-term. Okay, maybe not a thousand…
but a BUNCH of research articles. I can
tell you until I’m blue in the face how much Ellie grows because of the example
her peers give her. I can tell you that
having Ellie in a classroom with her peers challenges her more and helps her
achieve bigger gains. I can also tell
you that typical kids who grow up with an inclusive classroom (doesn’t have to
be academic) are more likely to hire adults with disability when they grow
up. That’s a fact. And in the future, when we’re facing a world
where over 80% of people with disabilities cannot find work (that is the
current reality)… you can bet I’ll be pushing for inclusive work environments,
too. But right now, I want Ellie to have
a chance to make a new friend. I want
her to show the girl who’s afraid of touching her that there is nothing to be
afraid of. I want her to show up in
Perfectville and shake things up… show Perfectville that there is so much more
to life… that life doesn’t have to fit a set pattern – doesn’t have to fulfill
that quality assurance check-list to be vibrant and beautiful. Life outside of Perfectville is amazing… but
if Uglyville and Perfectville were fully combined in real life… man, what a
world that would be! From the bottom of
my hurt heart this morning, I’m thankful that you’re following along. I’m thankful for your love and support… I’m
thankful that you see our Bug for her… and I’m oh, so thankful for everyone who
absolutely adored her recital footage I posted in May. She freakin’ owned that stage!
Ellie with her UglyDoll, Ox
Ribbon dance was her favorite of all dance games
Two of the friends she made in class last year
