Jessica and I have decided to pull Namine out of school. It’s not a decision we come to lightly, but we believe it is the right choice. We have thought much on the matter, and we feel that it is in Namine’s best interest to homeschool her, instead.

The first thing we have to consider is Namine’s health. If any one thing can be considered more important than her education, I believe it is Namine’s heart. Out of three months of school, Namine has barely gone more than a few weeks (and remember, a week of school for her is three days, two and a half hours each). It seems that for every week (seven and a half hours) she attends, she then gets sick for two weeks (two real weeks), at the very least. Namine had the same blasted sinus infection since September, and enough is enough.

To compound matters, she has also had an ear infection for nearly that long, and I think we all know how much she loves hates having her ear looked at, much less sucked out and cleaned. But you already know about that.

But the real scary thing about Namine being sick all the time is the fact that she’s still a post-Glen patient. She’s due for the Fontan, but we don’t know when. True, her cardiologist gave her at least until next year, but the fact of the matter is, we just don’t know. And if she’s sick when it comes time, they won’t operate until she’s gotten better. If she needed the surgery immediately, I’d rather not have to put her health even more in jeopordy by having to make her wait.

And then there’s the matter of her education. How she is treated at school is a point of contention for us, and for good reason. Namine is supposed to be getting physical therapy at school – in particular, she is supposed to use her walker as much as possible; she is supposed to be getting herself in and out of her wheelchair (something she can do rather well now); and she is supposed to be allowed to scoot around, as well as propel herself in her wheelchair. It seems as though none of this is happening.

She wasn’t allowed to use her walker or scoot; she was kept in her wheelchair all day. But even that would not be a totally bad thing, though, if she were allowed to push herself, but she wasn’t. If a teacher wasn’t pushing her, then another student was allowed to. (My reaction was pretty much Say what?!?) She’s not getting any of the therapy for her legs that she needs at school. So I ask, what is the point?

Let’s be honest here. Namine doesn’t have any learning disabilities that we know about. She’s catching up to her normy peers, true, but that’s because she’s been hospitalized for half her life. But she knows how to count – at least to 12, even 20 when she’s being cooperative – she knows her colors, her animals, parts of her body, and nearly all of the alphabet. At school, they spent a month on schoolbuses. A month. I understand that they have to accomodate all the kids in the class, but Namine needs a faster, more challenging pace than that.

When Jessica picked her up at the end of the day (read: afternoon – her “school day,” remember, was really only two and a half hours), there is often an accompanying sheet that is supposed to tell us what Namine did today. But instead of explanation, it merely raises more questions. Instead of a description or explanation, there would simply be a phrase, like “Song and dance.”

Fantastic. What about song and dance? What song did you sing? What kind of dance? Did it require lower body movement, and if so, what did you do to accommodate Namine? Did you work on memorizing the words and music? How much does Namine know? To these questions (and more) we have no reply.

Quite frankly, I have more confidence in Jessica’s ability as a teacher. (I have none in myself, but she’s a great parent and she’s really a teacher.) And while you may say that I’m biased – because I am – I also know that she truly is a great teacher. She’s got the education and the experience, and I trust her more than those boneheads.

Moving on, the next concern is Namine’s behavior. Namine has learned little at school that she didn’t already know – at least what’s been taught by the teacher. What she has learned, however, we are not pleased with. She learned temper tantrums, and not mere screamy ones. From the shining example of other children, she learned to bang her head on the floor. Thankfully, she does not do that anymore, but probably only because we haven’t sent her back to the school in quite a while.

The list goes on, but I’ll just mention one more. It’s not the least of them, however, and I think this one makes me angriest, out of all of them. They taught her to stutter. The tantrums, at least, Namine rarely has anymore – and she hasn’t attempted to bang her head on the floor in a long time. Sometimes she will hit the floor or her leg in frustration, which of course we discourage, but it doesn’t carry the risk of causing permanent damage.

Before Namine started school, she received speech therapy from the clinic she goes to. Because she needed work on her consonants, they would tell her a word was (for example) “Kuh, cat.” The starting consonant once, then the word. But at school, they would repeat it over and over: “Kuh, kuh, kuh, kuh, kuh, kuh, cat.” And now, Namine stutters. She showed no inclination to stutter before attending school, and now her old speech therapist is working hard with her to get rid of it.

I myself used to have a stutter (and I still do, sometimes – most often when under great stress, or if I have to do some public speaking). In grade school, the mockery of classmates (who can be vicious creatures) was sometimes more than I felt I could bear. And because I have that sad experience, it makes my heart ache to think that Namine may endure the same. I am not impatient with Namine. I don’t try to finish for her; I let her finish her sentences in her own time. All we can do now is try to help her gain that ground back.

I’m actually trying not to sound too stabby. I was full of rage, to be sure – but really, we’re more sad than anything. Sad that a supposedly inclusive school would neglect and malign a child so as to put her farther behind. Sad that her needs would be so ignored. And I don’t mean to indicate that these things were done to Namine deliberately. I really don’t. I just think that the teachers didn’t know what to do with her; they’ve got mentally challenged kids, but Namine is the only physically challenged one in her class. And something we see often enough is that because she’s physically challenged, it’s also assumed that she’s mentally challenged. Worst mistake they ever made.


  1. Sorry, so sorry. This is similar to what happened to Ollie. Schools do very little to keep sickness out of schools. “We will send home a child who is sick, it is the rules.” BS, BS, BS. Ollie “went” to school for a year, he was there a few weeks, sick most of the other times.

    The assumption of her intelligence is absolutely maddening. Hopefully her speech can catch up and they will be able to easily see how smart she really is. They (teachers and therapists) have to be spoon fed at times, they cannot realize on their own about how smart a child is. In the past couple weeks, we have heard from O’s teachers and therapists, “Oh, he is so smart, I didn’t realize he could do all that.” No, you assumed he couldn’t. I believe I ranted about this before.

    You two are strong to take this responsibility on and I know in my heart that it is for the better now. Time to do what those teachers couldn’t do and teach that little girl everything she can handle, then shove it down their throats! (In a matter of speaking)

    LilO has her back! I’ve got yours.

  2. I think, under the circumstances, you’ve probably made the best decision you could. Once Namine is fully caught up from her trach- and hospital-related delays, and once she is older (say first or second grade) you could also if she if could be accommodated in “normy” classes. It might not work as well for kindergarten, but once they get really into the “learning” phase of education it’s something that I know could be an option. If she is as smart as you say (and I believe) she is, a decent school would be willing to work with you on that.

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