Doing All Of The Things

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Our babysitter was telling me about how she was excited to see a friend that she hadn’t seen in a while. The friend said, “Can we do all of the things?” And our babysitter replied, “Yes, we will most definitely do all of the things!”

Every time I think of this expression, it makes me laugh. I guess it’s a new expression that means “doing everything we love to do”?? I guess??

Sometimes I’m tempted to use it in conversation, but then I think people would accuse me of trying to be younger than my years…

But I do think of this in terms of Emmy. I want her to do all of the things.

I want her to play sports, go to dance class, take an art class, participate in the various clubs at school…

She doesn’t have to do anything she doesn’t WANT to do. But I want her to have the opportunities that any typical child has.

Some experiences have been easier than others. We have a gymnastics studio near us, and the teachers have been awesome with Emmy. She takes classes with her peers, but the teachers will modify a little bit for her. One student might walk across the balance beam on her own, while Emmy will get a little support from the teacher. One student might do a cartwheel flawlessly on her own, while the teacher might hold Emmy while she practices her cartwheel. But she does everything that everyone else does, and the teachers have been very happy to accomodate for Emmy’s needs. I didn’t even have to ask them. They just did it.

On the other hand, we have had a doozy of a time with dance. I enrolled Emmy in ballet classes at a very strict studio. It wouldn’t have been my preference, but Charlotte really liked the studio at first, and she wanted to go there. I’m a big proponent of having Emmy try everything that Charlotte does. So I signed Emmy up for the class, but I also told them that she has Williams syndrome because I knew that the standards of the studio are more strict than others. For example, a student would have to pass a “dance test” before moving to the next level.

The receptionist gave me the side-eye and said, “We can put her in our youngest class…We’ll start her there…That’s as young as we go…”

This was one of those situations that made me very uncomfortable. I could feel the judgment. I knew that the kids would be younger than Emmy. But I also felt that this person wasn’t keen to have her in the dance school — period — and this was a way to get her in. After all, the aim of this school is to build up dancers in a very strict, professional atmosphere. If Emmy couldn’t perform the steps, how would the teacher react?

But, on the other hand, Charlotte took a practice class, and the teacher was great. I really wavered back and forth on this, but I signed Emmy up nonetheless and put her in the youngest class.

The interaction with the receptionist made me feel “less than.” It made me feel as though I had to apologize for intruding on the professional atmosphere of the school. It made me feel as though I had to make excuses for my child who was born as she was — through no fault of her own.

I should have known *at that moment* that this wasn’t the right place for us. But, you see, I want Emmy to do all of the things! I want her to wear her little ballet outfit with her hair up in a bun. Mostly, I want her to have the exact same opportunities that Charlotte does. If Charlotte is accepted into the class as a typical child, I want Emmy to be accepted as well.

Here’s the irony. The class ended up being a disaster but not for the reason I imagined. It wasn’t because Emmy couldn’t keep up with the steps. In fact, because the kids were younger than Emmy, they were totally out of control! They didn’t follow directions. They cried during the whole class and ran out of the room constantly. I don’t blame them one bit. They were quite young! But that wasn’t the class for Emmy. Just because Emmy has some challenges doesn’t mean that she should immediately be placed with younger children. It was really illuminating! Emmy surpassed these kids in maturity. I asked the teacher to move Emmy to the next level, and she declined. She said Emmy was placed correctly. I kindly disagreed.

This is a dance school that many people praise, but we ended up leaving. It just wasn’t a good fit.

That interaction soured me to dance for a while, but it was something that continued to eat away at me because Emmy loves to dance. I didn’t want to deny her the experience of a dance class just because of this one situation.

After a few months, I decided that we should try a free practice class at another dance studio near here. It’s a very popular studio, but I’ve heard that it isn’t as strict as the first.

Everyone seemed very nice — the owner, the receptionist…we were off to a good start! This time, I didn’t tell them that Emmy has Williams syndrome. I didn’t want them to put her in the younger class again. I couldn’t risk another experience like the previous one.

This class was for five to seven year olds, so both Emmy (at age 5) and Charlotte (at age 7) would be in the same class. It’s an “acro” class, so it’s like “acrobatic dance.” Charlotte would look out for her sister. This seemed like a good set-up.

I dropped the girls off in the class and was lead to an area where I could watch them. As the minutes passed, I almost cried. I couldn’t hear what they were saying, but I could see how the teachers were treating Emmy. When she couldn’t get into a straddle perfectly, they stood over her and admonished her. When Emmy did a bridge (which is really hard for someone with Williams syndrome!! Really, really hard!!), I could tell that they weren’t impressed. They weren’t kind. I walked back in the class, picked up Emmy, and carried her out of the room. The teachers saw me and completely ignored me. Charlotte came running over and said, “This isn’t going well.” I asked her if she wanted to leave, but she said she would finish out the class. I watched the rest of the class while holding Emmy in my arms. I was fuming.

After it was over, the teachers walked out of the room and looked at me with disgust. They didn’t say anything to me and just marched by.

“What happened in there??” I asked Charlotte.

She was rattled. “Mom, they were so mean to Emmy. She did that bridge, and it was AMAZING! Emmy said, ‘Am I doing a good job, teacher?’ and the teacher said, ‘No.’ Can you believe that? I WAS SO PROUD OF HER!”

She continued. “I could hear the teachers talking about Emmy. They said, ‘What’s wrong with her?’ And ‘I thought she was supposed to be five years old?'”

Charlotte was very upset. My seven year old knew this wasn’t right.

I was appalled by the way they treated Emmy, and of course we didn’t go back. Friends told me to contact the owner and express my disapproval. I haven’t done that. In the past few weeks, I’ve heard similar things about this studio, so it makes me feel as if this is the atmosphere, and I don’t know that things will change if I speak up. But maybe they will. I don’t know. The whole experience really upset me, and I kind of just want to move past it.

But I want Emmy to do all of the things! Just because other people don’t know what class she fits in or don’t understand her challenges doesn’t mean that she shouldn’t have the opportunity to do all of the things, right? The Americans with Disabilities Act is something with which I have become very familiar. It protects my daughter. She should be able to experience everything that everyone else does. However, the Americans with Disabilities Act doesn’t change people’s reaction to her. While she may be able to DO all of the things, she may not be viewed in the same light  — or with the same promise — as the other students. That part is rough.

You know what? Third time’s a charm.

A mom told me about yet ANOTHER dance studio that just opened. The owner, she said, is fabulous — very kind and understanding. I pushed my misgivings aside and only saw hope. I emailed the owner and explained our situation. I told her about Williams syndrome, and I also told her briefly about our past two experiences. I told her that I don’t want Emmy to be automatically put with the younger kids, but I also don’t want her to be admonished for not doing the steps properly when she ALWAYS, ALWAYS tries her best. I asked if we could figure out a class that might be right for Emmy.

She called me right away. She told me that my email broke her heart and that she would absolutely find the right class for her. She did, and Emmy loves it. It’s another “acro” class. She is with her typical peers that are her age, and the teacher helps her when necessary. She gets some modifications. When she has trouble with a big cartwheel, she tries a small cartwheel. And her bridge has only gotten stronger and more beautiful. The teacher consistently praises her effort. It is a wonderful experience. They have made us feel welcome and included.

I don’t know why every place isn’t like this. It took us three chances to find a place that would accept us as we are. It’s not that I’m being difficult or that I’m expecting special treatment. I just want Emmy to be able to do all of the things that everyone else does. I think that’s reasonable. In fact, I know it is.

A Story About Sisters

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Charlotte wrote a “How To” story in school. The topic she chose was “How to Help Your Sister.” For her dedication in the beginning, she wrote, “I dedicate this book to Mommy because my Mommy taught me how to help my sister.” She wrote about helping her sister down the stairs, helping her get dressed, and helping her brush her hair.

My first thought was: This is the sweetest thing I have ever seen in the history of the world!

My second thought was: Have I put too much of a burden on Charlotte?

I felt the #1 Mom feeling, which is guilt. Am I not doing this right? My original intent was that I didn’t want Charlotte to feel like she always has to help Emmy because I didn’t want her to resent her sister later in life. (Though someone commented on my blog once that she, as an adult, loves helping her sister with Williams syndrome and that she would do anything for her.)

I just don’t want Charlotte to look back on her life and say, “You know, my mom really screwed things up because she made me help my sister too much, and now I have the following issues…”

But then I thought…

Wait a minute. I helped my own sister! I was always looking out for her. I’m sure my sister felt like she had 3 parents because I was always putting my nose into everything. I remember being in a grocery store with my mom and my sister and, while my mom put in her order at the deli counter, I would chase my sister around the grocery store and call back over my shoulder, “You need to watch her!!” Of course, my mom had an eye on her the whole time, but she found it hilarious that I played the role of guardian (while chastising her for it…).

My sister and I recently found some old videotapes of my 13th birthday party, and we had so much fun laughing at ourselves. The grainy footage showed the party in my house with music blasting. Our living room was crowded with friends and even a boy that I liked. But while I was surrounded by people my own age, I danced with my 7 year old sister for hours. There we were in the middle of the circle–spinning around and laughing. We both commented on it. “Wow, I basically ignored everyone else and spent the party with you!”

Growing up, I included my sister in everything. “This is my little sister!” I would call out to anyone who would listen. I always had a protective arm around her, and I loved doling out advice. When I finally got my driver’s license, we continued to spend all of our free time together–out and about. And when I got to college, I brought my little sister to parties and watched her like a hawk (reminiscent of days in the grocery store as kids).

I don’t remember if I helped her down stairs or if I brushed her hair, like Charlotte does with Emmy. But I know that I’ve helped my sister in other ways–just as she has helped me. It’s always been a give and take. (My little sister has even called a boy on my behalf, to ask him to a dance. I was 15 and she was 9. At the time, my shyness was beyond embarrassing. Now, I can laugh about it.)

With Charlotte and Emmy, I see that give and take. Some of Emmy’s greatest strengths come from her reliable company. If Charlotte needs a hug, Emmy is right there. When Charlotte needs a laugh, Emmy is happy to provide it. When we moved to a new town a few months ago and didn’t know anybody, Emmy stepped into the role of “steadfast companion” to Charlotte. They spent all of their free time together.

The other day, I found one of Emmy’s books in Charlotte’s room. I asked, “Did Emmy leave this here?” and Charlotte responded by filling me in on their morning routine.

Every morning, Emmy wakes up first. She grabs a book from her nightstand and walks over to Charlotte’s room. She knocks softly on the door and enters. Charlotte is still in bed–sometimes sleeping. The two girls don’t say a word. Emmy sits on the floor of Charlotte’s room with her book and leafs through it, waiting for her sister to get out of bed.

I said, “You guys don’t talk at all?”

Charlotte replied, “No. She just likes to be in here with me.”

Their bond is strong. There’s a give and take. For now, I think it’s equal. What role Charlotte will take on in the future remains to be seen. I don’t want her to feel burdened, and I don’t want her to resent her sister. But for everything I’ve done for my sister and for all the times I’ve been there for her, I feel zero burden or resentment. Yes, the circumstances are different. But from what I see in Charlotte and Emmy, that special bond is exactly the same.

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