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Saturday, August 25, 2012

Sharing the Diagnosis with Daycare

We found out about Belalu's diagnosis a couple of days before we left town for a month and a half. I had already mentioned it to her daycare teacher when the Dr. suggested dwarfism at her 9 month appointment. I was in shock, because of the way he had said it to us, and it just came out in a conversation with her. So, when we got the official diagnosis, I followed up and told her it was indeed hypochondroplasia, as we had figured out. Her question to me was "Who do you want me to tell? Are you ok with me mentioning it to the students or would you prefer I don't?" (Belalu and Essie go to the Children's Center at our university, which has a strong early childhood education program. So in addition to each room having a main teacher, it also has a number of students who work there, usually for most of their time at the university, and a few other practicum students who are there a semester at a time, though some then are hired on and work there until they graduate. It's an amazing program, and has been rated one of the best daycare programs in the state.)

When she asked me that, I didn't know what to say at first. It's not like it was going to be a secret, but at the same time, I wondered, do all these students need to know, especially those that will only have contact with her for a few months? I asked J when I got home, and he said, "of course she can tell them- it's not a secret." I couldn't really say why I still hesitated, but I did wait a few days before going back and telling her that she could go ahead and mention it to the student staff. Then she asked me to repeat again the name of her condition, and I told her, but I said that all she needed to mention to the other staff is that Belalu has a bone condition that restricts the growth of her arms and legs. I also emphasized that at this time her condition would not affect her mobility in the classroom or call for special treatment. Then she said something that surprised me- the students had already noticed that her arms were short. I think I've mentioned here before how I'm so used to her proportions, that they don't seem unusual to me. If you work with children all day, however, differences are more obvious. When she told me that, I realized that I had been hesitating to give her the go-ahead, because deep-down I was thinking that if they didn't know she had a condition, they wouldn't notice she was different. Ridiculous, I know.

Essie and Belalu started back a daycare this Tuesday, and last weekend I decided to email the program director, who is also someone I interact with on campus for other things, and tell her about Belau's condition. She will likely be here through preschool, so I figured the sooner they knew, the better prepared they could be. I cc-ed the infant room teacher and attached a .pdf file of "It's a Whole New View," the parents' guide from the Little People of America's website. She responded that she didn't know about Belalu's diagnosis, and has not worked with that condition in the past, so "we can learn together." She also thanked me for sharing the guide, because it answered a lot of questions. She closed the email telling me that Belalu will surely thrive in such a great family and with the teachers there. Once in a while I still picture them all in a staff meeting, being "updated" on her condition, but I just have to let it go. Yes, people will talk about her. However, with her personality, I doubt that they will linger long on her condition. There'll just be too much other great stuff to say.


  1. That was one of the things I spoke to our preschool teacher about - what to tell others if they ask about LH. The teachers are required to keep things confidential. I gave her permission to answer questions, if she felt comfortable doing so - or to refer them to me. While I don't want to broadcast the hypo and make such a big deal of it that it becomes who he is, I also don't want the opposite - where it becomes the elephant in the room that no can talk about and learn from. It is what it is, but it's not all of him. Not sure if that makes much sense. If the kids ask, I really want to embrace that natural childhood curiosity, and ensure they are getting the correct answers.

  2. I have been very careful with my choice of words, I normally just say that she has a medical condition which impacts the way her bones grow and this impacts her height. In the UK/I people use the term "restricted growth condition" and I quite like that.
    It's funny that she would say that they noticed the arms... I do think that from an early age on, the arms are most noticeable. People think that babies have large heads and short legs, but the arms and how their elbow is a lot higher than what you would expect is quite visible.
    Don't think about the discussion. I am sure they will say that she may be a little smaller but makes up for it with beauty and intelligence - people normally do say very kind and gracious things.