A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.
This happened before I found the right place…
Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”
Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.
In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!
Ok, so I knew I was going to tell. I just didn’t know when or how.
I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”
I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.
Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.
So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”
Cat’s out of the bag!
I swear his eyes nearly popped out of his head.
“And what’s that?” he asked.
I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.
He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”
He walked away and came back with a post-it note that had a number on it.
“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”
I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.
I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.
This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.
I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”
UGH. OUCH. I couldn’t believe those words came out of my mouth.
The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”
I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.
She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.
Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.
“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”
People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.
So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.
I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.
So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.
Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.
Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.
So this whole experience, while stomach-churning in parts, gives me the confidence to say:
I am no longer apologizing for the special needs of my very special child.
Love you, kiddo.