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.

Williams Syndrome Convention

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We drove for 9 hours to get to Columbus, Ohio…with 3 kids in the car. When we first signed up to attend the Williams Syndrome Convention, it seemed like the drive would be palatable. But as the days inched closer, I kept turning to Dan with fear in my eyes and saying, “I think we should reconsider…can we cancel?” I was freaked about that drive.

Well, as Theo loves to say, “Weeee DID IT!”

And I’m so glad we went! It was worth every minute in the car and then some.

When we first arrived at the hotel, Dan and I were totally out of sorts. It took us a while to get the stroller out, grab our suitcases from the car, and chase kids around the lobby. The kids were anxious to do everything immediately!

As we were checking in and trying to calm them down, Charlotte started to notice all the people with Williams syndrome in the lobby. We had already been to a Williams Syndrome Convention in Boston in 2012, when Charlotte was only 3 years old, but she didn’t have any clue about Williams syndrome at that time. Now at 7 years old, she understands a little more about it, and she started to take in the sight of all the friendly people in the lobby.

It’s interesting to see how the week has an effect on you. When we went to the Convention in Boston, Dan and I were at first overwhelmed by the friendly nature of people with Williams Syndrome. Emmy was only 1 year old at the time, so we didn’t have a strong idea of how social she would be. Plus, we’re quite reserved ourselves. So when people started approaching us right off the bat to have a chat, we were a little thrown off. As that week went along, we totally embraced the culture and loved every second of the friendliness. There’s something so awesome about someone remembering your name and greeting you with absolute joy every time she sees you on the elevator. We missed that feeling of joy like crazy when we got back home.

Just like us, Charlotte wasn’t used to the friendliness. As she looked around that lobby, she said cautiously, “I think I’m the only person here who doesn’t have Williams syndrome…”

“You’ll see lots of people here,” I said. “Can you tell that Emmy has Williams syndrome?”

“No, definitely not,” she replied.

Charlotte just sees Emmy as her sister. She doesn’t really think about Williams syndrome.

Later at dinner that night, Charlotte seemed to really ponder the idea of “Williams syndrome.” I could see her working over it in her mind as she sat next to Emmy in the restaurant booth. She was studying her face.

Finally, she said, “Mom, I can see it.”

“Huh?” I asked.

“I see it in Emmy. I see it in her lips.”

As the days went on, Charlotte met many people with and without Williams syndrome. I could visibly see her grow more and more comfortable with everyone’s friendliness. She allowed herself to loosen up and just enjoy all the different personalities. I have a very boring saying that I tell her all the time that kind of sums up life: “Everybody’s different!” We use that one a lot, especially when kids on the playground ask why Emmy is smaller than everyone else or why she can’t run as fast as the others: “Everybody’s different!” I’ve noticed that it’s a good way for Charlotte to close out a conversation with a kid on the playground who keeps prodding her about Emmy. Who can possibly argue with “Everybody’s different!”??

During the week, Charlotte went to a YMCA camp (organized through the Convention) and made a bunch of friends — mostly typical siblings of people with Williams syndrome. She really got along with these kids nicely! Every night she was bubbling over with stories about her new friends.

Emmy and Theo also went to camp in the hotel. There were all sorts of activities for them to do throughout the week. I think Emmy’s favorite part was meeting Batman. She has no fear. Ever.

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While the kids were at camp, Dan and I attended sessions and learned a lot! I have to sheepishly admit that I thought I was pretty much an expert at Williams syndrome after 5 years with Emmy. There is SO MUCH more to learn! There were plenty of people with grown children in their twenties and thirties who still came to learn — and perhaps mostly to share their stories with others.

My favorite session was the exact same favorite that I had at the Convention in Boston: the sibling session. When you hear brothers and sisters talk about their siblings with Williams syndrome, it immediately brings tears to your eyes. It would be IMPOSSIBLE not to cry in that room. They see their siblings like no one else can. And they’ve become more tolerant, understanding, and patient people because of their siblings. Many of them go into teaching, physical therapy, or music therapy. Many of them volunteer at Williams syndrome camps, and many of them were volunteers at this Convention. Imagine learning the beauty of volunteerism as a young teenager? That has to change your life.

The siblings said that coming to these Conventions every couple of years really helped them to better understand their own brother or sister with Williams syndrome. They encouraged us to keep bringing all of our kids because it helps the typical siblings to comprehend Williams syndrome and helps to foster understanding and appreciation of their brothers and sisters, instead of frustration or resentment.

So of course Emmy and Theo had a great time at the Convention. They just played and had fun all day. Theo didn’t know why we were there because he’s too young. I think Emmy is starting to understand Williams syndrome just the tiniest bit, but it’s still very much of a foreign concept. But we didn’t know how Charlotte would react. I know it sounds silly, but being surrounded by friendly people can be overwhelming. Of course, it shouldn’t be that way. In a perfect world, everyone would be friendly! But our society is generally more closed off, so it’s like being in an alternate universe when you’re surrounded by social people who approach you without reservation.

To our delight, Charlotte had the most amazing time. She declared that it was the best vacation she’s ever been on!! She really, really loved it. Kudos to the Williams Syndrome Association for putting together an awesome Convention that had my 7 year old gushing!

On the last day, we were standing in the lobby checking out, and several adults with Williams syndrome came over to talk to us. One woman pointed at my kids and said, “They are so adorable!!” Then she looked closer and said, “Which one of you has Williams syndrome?”

I was surprised to see Emmy raise her hand right away and say, “I do!”

I’m not sure that she knows what Williams syndrome is, but now it’s official — she definitely knows that she has it.

We can’t wait for the next Convention! Especially Charlotte.

A New Twist

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So here’s a fun, new, little twist. We found out that Emmy has Celiac disease!

She’s always been petite, which we attributed to Williams syndrome. But she’s also fatigued most of the time, which we also thought was related to Williams syndrome (and the low muscle tone that comes with it). Stomach problems were only an occasional thing, so Celiac disease never crossed our minds.

I brought her to a new doctor to discuss Emmy’s growth, and she asked if we have any allergies in the family. I have a sensitivity to gluten and dairy, but other than that, no formal allergies. The doctor said, “Well, since we’re getting her blood taken, let’s check her for Celiac disease because of your gluten sensitivity.”

During that time period, our attention immediately focused to Emmy’s heart because a few doctors heard a heart murmur (which hasn’t been heard since before her heart surgery in 2013), and there was a scramble to get an appointment with our cardiologist. I was totally focused on her heart, which is ok — thank goodness, and I put the discussion about Emmy’s growth temporarily out of my mind.

On the same day the echocardiogram of her heart came back ok, we got a call from the first  doctor to say that Emmy has Celiac disease, and her numbers are off the charts! (They don’t even need to do an endoscopy to confirm the results because her numbers were so high.) I was shocked but also so incredibly relieved about her heart that I thought, Hey, we can handle Celiac disease. No big deal. Especially because I’ve been gluten-free for a while, so I already had some familiarity with what it means to eliminate gluten.

Then, as the days passed, I realized:

  1. A child going gluten-free is totally different from an adult. I’m ok with salad and nuts. Emmy wants mac-and-cheese and chicken fingers.
  2. Eating out will never be the same. We can no longer just grab something anywhere at anytime.
  3. Birthday parties are going to be a bear for her. When the other kids are having the standard pizza and cake, I’m going to have to find an alternative for her. (Incidentally, am I supposed to show up with my own pizza and cake?? This is going to be a weird situation and has the potential to alienate her from her friends. I’m nervous about this one…)
  4. Classroom parties at school are also a problem. For her St. Patty’s Day party, my husband Dan had to quickly bake some gluten-free cupcakes.
  5. Emmy has a severe level of Celiac disease, so she has to wash her hands after touching something as innocent as Play-Doh (which has gluten apparently!), and we have to read every label to make sure that the food wasn’t processed in a facility that also processes wheat.
  6. My very first blog post, Green Bagel Morning, takes on a whole new meaning. When I wrote that, I never would’ve thought that we’d have to stress about something as simple as green bagels three years later.
  7. Oh and…I’m going to have to learn how to cook. Ughhhhhhhhhh. And BAKE. UGHHHHHHHHHHHHHHHHHHH.

About that last one… I’m an ok cook, but it doesn’t come easily to me AT ALL. If you want to see me pull my hair out, give me a recipe. It’s all so overwhelming. I actually go into panic mode. I will read a recipe ten times and still not know what I’m supposed to do. All the words start to blend together, and I begin to have a mini panic attack.

If you don’t believe me, consider this. The other day, I asked Dan if we have a Cuisinart. He started laughing and said, “Of course we do! We got that for our wedding!” Then I asked him to show me where it is. And because it all became so daunting (with the blades and everything — yikes!!), I asked him to just take out the Cuisinart and leave it on the counter. It’s been sitting on the counter mocking me for about a week. I haven’t touched it…

But I can throw together an ok meal (usually sans recipe because I just go for the trusty olive oil and seasonings). However, baking is a JOKE. Here’s a secret: I have not baked anything from scratch ever. EVER. EVER. EVER.

Well, that’s not entirely true. I did try once. When we were trying to sell our house, I was thinking of ways to make it smell nice for a showing, and somehow I came to the conclusion that baking brownies was the answer! Because recipes make me panic, I just casually glanced at a recipe and then threw the following in a pan: eggs, butter, cocoa, baking powder, and something else (maybe milk?). I stirred it all together and baked it! Ok, I have to say that it smelled AMAZING. It actually smelled like brownies, and even our realtor commented that the house smelled great. I thought, This baking thing isn’t so hard after all!

But when Dan came home, he made the mistake of taking a bite. I think he’s still recovering…

That was the last time I attempted to bake anything.

The picture at the top of this post was taken when I discovered a gluten-free bake shop! It’s an hour away, but I’m willing to drive. The kids loved it!

So here we go on our new journey. Hang on tight! 🙂

Why Words Matter

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I don’t read baby books anymore. With Charlotte, my first born, I read them diligently. I wanted to know when she would be rolling over, standing, and saying her first words. I didn’t really worry about her meeting those milestones, but I wanted to know what was in store for us. When we found out that Emmy has special needs and then when she started missing her milestones, I couldn’t bear to read the books because they served as constant reminders of the things she wasn’t doing yet.

And, often, it wasn’t so much what they were saying as how they were saying it. I would see gentle reminders that some babies just develop later than others, accompanied by words like “Your baby may be normal!” There were reassurances that even if your baby wasn’t meeting milestones, things would most likely be ok. There were broad ranges for milestones and, as long as your baby fell into those ranges, everything would be fine.

But what if your baby didn’t fall into those ranges?

Then I would see words like “Talk to your pediatrician” or “Contact a doctor.”

So everything seemed happy and cheery when your kid was meeting milestones but, if not, you knew that there was bad news lurking around the corner.

There were two camps. The children that were developing “normally” (this word is used all the time) and the children that weren’t. If you were in the first group, the implication was that things were going swimmingly well! But if you fell into the second group, it sounded like things in your life were about to get pretty miserable.

But I have to say that even though Emmy didn’t meet all of her milestones, our life is far from miserable! She is an absolute joy to be around — milestones be damned. No, she didn’t fall into the “normal” (I hate that word) charts, but she has enriched our lives beyond belief. I could gush about her all day but, to sum it up in a word, she’s awesome.

So now I have an almost-10 month old baby, Theo, and I haven’t opened a baby book.

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After years of physical therapy sessions with Emmy, I know a lot about how children develop — more than I ever dreamed I would know. So I have many of the milestones filed away in my mind and, while I don’t obsess over them, I am aware of them. Theo is on schedule, but I still ended up breaking my rule and did a Google search to find out whether standing comes before or after crawling. And that lead me to a page about walking. And here is what I found:

“Most babies take their first steps sometime between 9 and 12 months and are walking well by the time they’re 14 or 15 months old. Don’t worry if your child takes a little longer, though. Some perfectly normal children don’t walk until they’re 16 or 17 months old.” (Baby Center)

“Some perfectly normal children…”

Isn’t it funny that I haven’t looked in a baby book FOREVER — for this reason alone — and then, on my first search about milestones, these are the words I find?

Why are we calling children “perfectly normal”? And for that matter, what about the children who aren’t deemed “perfectly normal”? What about them?

And then, on the next page, the inevitable dismal line:

“Don’t fret if your child is simply taking her time. But if your child doesn’t stand with support at 12 months, can’t walk at 18 months, or isn’t able to walk steadily at the age of 2 years, bring it up with her doctor.” (Baby Center)

Can’t you just hear the threatening music? So now we know that if things don’t happen by a certain timetable, something scary may be lurking around the corner…

Well, what was lurking around our corner was Williams syndrome! And it hasn’t been bad at all! Her beautiful smile is a Williams syndrome smile, and it lights up our lives every day.

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But, beyond all of that, let’s revisit the words “perfectly normal,” and let’s look at them in terms of a child who is typical.

The first word, “perfect,” is a heavy word. We throw it around a lot, but it is heavy. When you strive for perfection, you will always fail — every, single time. Nobody is perfect. Perfectionists always feel like they’re doing something wrong because, until they’re *absolutely perfect*, nothing is ever right. And because they can never achieve the status of *absolutely perfect*, they end up constantly unsatisfied. So a perfectionist, like myself, is often caught in a trap of inevitable failure. Cheerful, huh? 🙂

Perfectionism can be debilitating. It stops you from doing tasks. If I don’t have time to arrange everything on a shelf perfectly, I won’t even put one thing on the shelf. I had to ask my husband to unpack my boxes (we just moved) and put things on the shelves anywhere he wanted because my desire to have things just so was getting in my own way.

I REALLY try not to use the word “perfect” — especially around kids. However, it’s a word that often pops into my mind. If Charlotte carefully writes her name at the top of her paper, it certainly looks perfect to me! But I don’t want to put that on her. So I choose another word. Or if Emmy puts on her socks the right way, it certainly looks perfect to me! But, again, I pick another word.

And after the word, “perfect,” we have another favorite of mine — “normal.” Someone once said that “normal is a setting on the washing machine.”

What’s the opposite of normal? It’s abnormal. Do we really want to call a child abnormal?

I like to use the word “typical.” As in, “typically children develop like this.” But if they don’t, that’s totally ok too. Everyone is different. That’s what makes life interesting.

I feel like there’s a lot of fear around milestones. You’re either developing “perfectly normally,” or all hell is breaking loose. There’s no grey area. I want to share that, in our case, things went as far from “perfectly normal” as you can get. We are all the way at the other end of “perfectly normal.” But I want to let you know that things over here are pretty great too! In fact, they’re magnificent. 🙂

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Starting Over

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One week before Emmy’s first birthday, we were headed to Boston for a “vacation.” A mom asked me why we were vacationing in Boston. Did we have family there? Were we going to take the kids to the Children’s Museum?

I was vague with my response. “Oh you knowww…the usual stuff people do…”

If I had told her the real reason — that we were going to the Williams Syndrome Association‘s National Convention — I would’ve had to tell her that Emmy has Williams syndrome. And I wasn’t prepared to do that.

Very early on in Emmy’s diagnosis, we met with many doctors to find out more about our little girl. One of those doctors advised us not tell people about Williams syndrome right away.

You see, right before Emmy was born, we moved to a new town. So nobody knew us. And the doctor wanted people to get to know Emmy, and our family, first — without the label of “Williams syndrome.”

I took that to heart, and I didn’t tell anybody. Only our immediate families and a few friends knew. As time passed, I used to think, “Gosh this is starting to feel very uncomfortable and secretive.” But so much time had gone by, and I hadn’t said a peep. So it felt strange for me to now say, “Listen, I’ve been meaning to tell you something for the past year…”

It was a cycle that fed upon itself. The deeper I got into the secretive nature of it, the harder it was to say something.

And then, when Emmy was 1.5 years old, and we were a few weeks away from heart surgery, I FINALLY opened up to a neighbor. She was so incredibly sweet about it, and I wondered why I hadn’t just told her all along.

At that point, I kind of began “The Big Reveal” and started telling people left and right. But at this point, it was odd because everyone thought that we were just a regular family going through regular family stuff. And I would say, “Sooo you know us very well by now…but there’s something surprising I have to tell you. Emmy is going to have heart surgery next week” [which was met by complete shock and, sometimes, horror] “and she has something called Williams syndrome, which is very rare, and comes with all sorts of implications” [which was met with more shock followed by kindness].

If I were to do this all over again, I would’ve kept it a secret until I got a better handle on it, and then I would’ve told people. So maybe 2-3 months. After a year and a half, it came across as very shocking. And I think people also wondered why I had been hiding it for so long. When I think back on it, it’s very possible that the doctor meant for me to keep it a secret for 2 months and not a year and a half. But I didn’t think to ask about the exact timeline. I was just trying to process it all myself.

So after “The Big Reveal,” everyone knew. And I actually felt more comfortable with people knowing than not knowing. We needed a lot of support during and after her heart surgery, and people were there for us in droves. I was glad that I shared it publicly (I started blogging a little before then) because we couldn’t have gone through heart surgery without that support.

I was very comfortable with Williams syndrome, very accepting of Emmy, and very open about the diagnosis.

And then we moved.

And I never realized that we would be starting over. We would be back to a point where no one knew. I didn’t even have time to think about all of this before because we moved so quickly. And then once we were here, it hit me. All new people. None of them with any clue about our little family and what we’ve been through.

And now I would have to start telling people again. If I had thought about it before, I probably wouldn’t have imagined that it would be a big deal because I’m so open about Williams syndrome. But, somehow, it ended up being a big deal. Because I’m back in that same picture that the doctor painted early on. I’m new to a town. Nobody knows us. And, yet, we’re carrying a label.

Shouldn’t people get to know Emmy first before I hoist this label on top of her? Shouldn’t people get to know our family before I say, “My daughter has a syndrome that you’ve never heard of…” What would they think?

It’s been so long since I’ve thought about what others think when it comes to Williams syndrome, or how our family will be perceived, or the implications that a label would have on Emmy.

Things have changed because she’s older. She’s 3.5 years old, and she wants to play with other kids. She’s no longer a baby. She’s much more aware of how she’s treated by others and more aware of the reactions she gets. She can read people’s faces now. She can feel how they relate to her and can tell if they’re comfortable around her.

Keep in mind that Emmy doesn’t know what Williams syndrome is. I’ve told her, but she doesn’t understand it yet. Charlotte, my five year old who is typical, doesn’t really understand it either. So it’s a lot to take in. But I think that Emmy can feel that she’s different in some ways. She knows that she takes longer on the stairs when other kids just race down. She knows that she stands in the front of the line because she’s so tiny. I think she knows that there’s something there, and I think she is perceptive about how others relate to her.

So I find myself in the same place but a different circumstance. I’m in a new town where nobody knows about Williams syndrome…but now my child is older. And my mind doesn’t go to, “What will people think? How will they react to our family?” My mind goes straight to, “I just want to protect her.”

My instinct is not to tell. I want to protect Emmy, and I worry about how others will treat her. Not everyone understands what it means to have special needs. Not everyone grew up around someone with a disability. I, myself, had no clue about any of this until she was born.

But, even though my instinct is not to tell, when I finally told people before, life got a little easier. I wasn’t carrying around a secret, and I wasn’t silently censoring myself in every conversation — wondering if I gave too much away.

It might be better for me to tell.

Another Williams syndrome mom said a while ago, “It’s a great way of weeding people out. You can see who you really want to be friends with very quickly.”

So there I was, last Friday, talking to a mom in our new town. A possible new friend. She asked me casually about Emmy’s therapies, which she gets in school. So I replied, “Emmy has something called Williams syndrome.” My explanation of Williams syndrome is still lacking. It comes out in a rush like: “It’s a very rare syndrome that no one has ever heard of and has lots of implications…but she’s doing great!”

I have to work on my explanation. It’s a lot to take in.

But the mom smiled and said, “Oh, ok.”

This is where we are — starting over.

She Can

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You have a bowl of ice cream in your hands. A bowl of raspberry ice cream with rainbow sprinkles. And you’ve been waiting all day to eat this thing. You’ve been talking about it to anyone who will listen. Well, the moment is finally here!

You push your plastic, white spoon into the ice cream and pull it out…nothing. You jam your spoon in again, a little harder, and pull it out. Nothing. Your mouth is watering. You notice the other people around you. Everyone else is absentmindedly dipping their spoons into their ice cream and pulling them back up with a heaping mound of yummy. No one else seems to have trouble with this. But this is really hard for you. You even mutter, “is really hard.”

You try again, and finally you manage to spear a little bit of ice cream with the tip of your spoon. Victory!! But as you pull it towards your mouth, the tiny bit of ice cream falls off the spoon and onto your lap. Now you’re wet, your clothes are stained, and you still don’t have ice cream or sprinkles in your mouth.

But you don’t give up. And you don’t accept help. This is your battle to win. Again and again you try until, finally, you manage to keep ice cream on your spoon long enough to get it in your mouth. You weren’t able to get sprinkles too, but that’s ok. You’ll try again next time. As you enjoy your first small bite of ice cream, you look around. Everyone else is done. Their bowls are empty; licked clean. In the time it took you to take that first bite, everyone else gobbled theirs down.

So it takes you a little longer. And it’s a little harder. But you don’t give up. You keep eating away, content to finally have your ice cream after a day of waiting.

This is what it’s like for Emmy when she eats ice cream, something that most people do absentmindedly. When I eat my ice cream, I don’t think about what I’m doing. It just, well, happens. But when Emmy eats ice cream, she has to work harder.

But she does it! She tries and, eventually, succeeds.

This is why it upsets me so much when people assume that children who have special needs can’t do things (Just Like You — my last post).

It’s not that they can’t.

They can, but it may take a little longer. They can, with help. They can, but they may need modifications. They can, with the proper supports in place. But they can.

Sometimes Emmy says, “I can’t.”

Not only are things harder for her, but she is TINY. Climbing on a big couch is difficult for her. Operating scissors with her little fingers is tough. And sometimes she defaults to “I can’t.”

But that’s not true. She can, and she proves it time and time again. Because with a little nudge, she’s up on the couch. With the correct positioning, she’s operating those scissors. She can. She just needs help sometimes.

And sometimes she doesn’t need help. There are many things that she does beautifully on her own, like dribbling a soccer ball. She learned that one from her older sister.

Last night at dinner, Charlotte proudly spelled her first and last name aloud. So, on a whim, my husband Dan asked, “Emmy, can you spell your name?”

She looked straight at him and replied, “E-M-M-Y.”

Dan and I practically leapt into the air and shouted, “Yes, yes, yes! That’s it!”

Then she gave a grin and continued calmly, “O-A.”

We’ll take it!! 😉

The teachers at her preschool have been awesome about including Emmy in all of the activities that everyone else does. And she’s learning so beautifully from both her teachers and peers. Sure, her construction-paper pumpkin looks a little different from the others. And her circles are not as perfectly formed. But she’s doing it all.

I think it’s important to acknowledge that people with special needs CAN.

She can. She will. She does. She did.

Just Like You

NJSTORY

Photo credit: nj.com

Liam is a 4 year old little boy who wanted to have his birthday party at a gymnastics studio in New Jersey. When his mom went to sign the contract, she noticed that there’s a “Special Needs clause.”

It reads: “Special Needs children: Please indicate if your child or any children attending the party have any mental or physical disabilties/special needs. (Surgent’s Elite is not certified in special needs instruction and reserves the right to deny party and gymnastics instruction.)”

Liam’s mom asked about the clause, while mentioning that her son has Down syndrome. Consequently, the gym turned her away.

This didn’t happen in 1954. This didn’t happen in 1994. This didn’t happen in 2004.

This happened YESTERDAY.

You can read about the story here:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html

And you can read the contract here:

http://surgentselitegym.com/pub/docs/Forms/h_Parties/PartyContract.pdf

(***Update: The contract appears to have been taken down. However, you can see it if you click on the link to the story and scroll to the second image:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html)

I’ve been upset about this since it happened. I assumed that this was a misunderstanding. And then, when I realized that it WASN’T a misunderstanding, I figured that the gym would quickly apologize and give Liam a free party. On the contrary, they doubled-down on their decision.

Their policy is that no children with special needs are allowed at this gym. Not for parties. And not for classes. Again, this happened YESTERDAY — not 50 years ago.

What the owner of this gym doesn’t understand is that Liam is just like every other child. I don’t even know him, but I know he laughs, cries, likes to have fun, and loves birthday parties — especially his own. How do I know this? Because he’s just like me. He’s just like you too.

People with special needs are human! They’re not meant to be segregated by our society. They’re not meant to be excluded from activities. They’re not meant to be pointed out and sent packing.

Imagine if this was you. Imagine if you wanted to have a birthday party at a particular place and the owner said, “You’re not allowed here.” Imagine how that would feel.

Or imagine if you were a guest at a birthday party, and you showed up in your best outfit, only to be turned away at the door. “Didn’t you see our clause? You’re not allowed here.”

Now imagine that this wasn’t you…but that this was your child. Your child showed up for a birthday party and was turned away at the door.

Just imagine that tear-streaked face. “Why don’t they want me here?”

Imagine telling your child why he or she is not allowed at this birthday party.

“It’s because you’re different, honey…”

“I am? How?”

People have left comments on the news story supporting the gym. They say things like, “Well, what about medical issues? I can see where the gym is coming from…”

So where does it stop? Pretty soon, people with special needs and/or medical issues can’t go to gyms, can’t go to parties, can’t go to parks, can’t go to malls, can’t ride in cars…

Everything is a liability, right?

I have a better idea. How about we treat people with special needs as if they’re just like us. We’re allowed to go to gyms, parties, parks, malls… We’re allowed to experience all aspects of life. That’s called being human. Everyone is afforded the same rights.

I know that my daughter loves birthday parties. LOVES THEM. I’m imagining her getting all ready for a party, cheering in the car when we drive up, and then getting banished at the door because “Didn’t you see our Special Needs clause?”

I’m imagining her turning towards me with that tear-streaked face and saying, “Why?”

And what would I tell her? That people with special needs aren’t allowed to go to birthday parties? Really??

I can’t do it. I can’t tell her that. She deserves MUCH, MUCH, MUCH better than that. She’s an incredible kid.

And if you met her, you would see that she’s just like me — and just like you too.