Monday, October 27, 2008


I couldn't think of a better title for this post. I was going to write about this little girl in my twins' preschool class, and how I overheard her mom say something to the teacher a few weeks ago about her daughter's "modified IEP" and how ever since then I've been stalking the mom and looking for an opportunity (and the right words) to ask her about her daughter. Stalking is really too strong a word - this little girl and her mom have just been under my radar, you know? But it seems like every time I see them I'm in a rush to get Joey to school or to get the kids home after preschool for lunch and naps.

Anyhow. So it turns out I don't have to stalk them anymore. We arrived at preschool a few minutes early this morning and were waiting around outside for the teacher to open the classroom and along comes this little girl and her mom. I've been rehearsing my little speech to this mom for weeks (and ran it by Michael who told me flatly "You can't ask her that." I, in my infinite and superior wifely wisdom, decided to ignore him). But of course I flubbed it all this morning. When I saw the opportunity to speak to her, my heart started beating all crazy and I stumbled over my words. I know I said something to the effect of "Can I be nosy? Umm, I'm really sorry. Please feel free to tell me to mind my own business. I overheard you . . . umm . . . a few weeks ago . . . you mentioned an IEP, and . . . umm . . . my baby has Down syndrome, so, ummm . . . well, I'm really sorry . . . I was just wondering . . ." She was very nice, and she told me that her daughter has Prader-Willi syndrome . I've never heard of it before.

Before she mentioned the name of the diagnosis, she first described to me her daughter's symptoms. She seemed reluctant to name the diagnosis, and as it turns out, she told me that she and her husband don't usually tell anyone that their daughter actually has a diagnosis. Not even their family. So despite the fact that this little girl had to be on a feeding tube for a long time and has been in different therapies since she was an infant, they've never told even their families that she has an actual diagnosis. The way she explained it to me is that they don't want anyone treating her "special." They just want her to be treated as a normal little girl. I can so relate to that! I can't imagine not telling the people in our lives about Finn's diagnosis though . . . obviously I'm not exactly the most private person in the world (as evidenced by this blog!). And maybe DS would be more difficult to "hide" anyway. I don't know . . . it feels a little sad to me that they expend energy on keeping her diagnosis a secret, I guess. I know I sound judgmental here, and I truly don't mean to be. I'm trying to understand that choice.

Anyway, I'm grateful to her for opening up to me about something she is clearly not comfortable talking about. I don't think I offended her . . . she didn't seem offended. She seemed friendly and genuinely willing to talk to me about her daughter, I suspect because I let her know that we are dealing with a diagnosis too.


Alycia said...

Hi Lisa,

I vaguely remember learning about Prader-Willi syndrome. The only reason I remember it at all was because the symptoms/ behaviors were so unique. Did you mention your blog to her?

What are the kids being for Halloween? Do you guys have any plans?

gabs said...

I mentioned months ago about a boy who I have taught who has Mosaic Down Syndrome, well his mother didn't tell anyone of his diagnosis. Even as his educators we were not given any information on him because his mother was determined that people would not form opinions of him based on a set diagnosis. She died of cancer while we were teaching him in Year 7, and his father then revealed his diagnosis. I have to say that knowing that diagnosis gave us much more insight into help him learn and cope with life, but I fully understand why she kept such a secret for so long too.

Chrystal said...

I remember learning of P-W syndrome not long after my daughter was born. There was this British reality show that used to come on that was super popular over there and one of the main characters had a son with P-W. I remember researching it. I tell ya, one thing about having a kid with Ds, it sure opens your eyes to the disability community as a whole.

Jeanette said...

I have had some of those odd conversations myself. I could totally relate to your stammering. Since my girl is now over a year, I am much better at approaching people.

BTW, I have 3 give-aways in honor of Down Sydnrome Awareness Month. Pop over to my site and check it out.

Anonymous said...

Loved that video of Finn and Mike. Another musician/drummer maybe.


Anonymous said...

Hi Lisa,

Just caught up on the last few entries and wanted to give you a (((HUG)))!!!