Saturday, August 17, 2019

UglyDolls in tutus

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

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