Potty Training Woes

I haven't written in the last week, and that's because what I really want to write about is a topic that has been frustrating to me, so frustrating that I'm hesitant to write about it.

First, the good stuff. Ever since coming home from the hospital two weeks ago, A has been doing great. She had her first-ever swim lesson last week (only her second time ever to be in a pool!) and seemed to like it, although going underwater shocks her. Yesterday we went to the beach, and afterward she took her first shower. Small things like this---swim lessons, a shower, a bubble bath--are huge to us. I am so grateful, and don't take it for granted at all. Unbelievable.

So, what's bad? Potty training. Yes, my newly-turned five-year-old daughter is not yet potty trained. And she's starting kindergarten at the end of August.

It's not like we haven't tried. I've tried training her on-and-off for years. In the past, it wasn't a big priority. Things like teaching her how to eat and drink (so that she could get her feeding tube removed) was number one in my mind. And then, of course, she didn't walk until she was 3 1/2, so I cut her some slack there. After all, I reasoned, how would she be able to go potty if she couldn't walk, let alone stand to undress herself? And with all the medical issues she's had, I kept making excuses for it.

This past year, however, I've been focusing on potty training more and more. A kept telling me she wanted to wait until she was 5. Well, she's been 5 for almost 3 weeks now, and we're still no closer to training than when she was 2.

A few weeks ago I decided no more diapers. She hasn't been in an actual diaper for a week and a half now (of course, I put a pull-up on her at night) and she's been in underwear. She continually has accidents. If I put her on the potty, and she sits for long enough, she'll eventually go...but she's yet to tell me (or a teacher at camp or at the gym daycare) that she needs to go. It's like she's continuing to use her underwear as diaper.

One of the big problems with this, besides the fact that I am READY to be done with diapers and training, is that she should be trained to go to kindergarten. She's going to a regular, non-special-ed class, and all the other kids will have long been trained. At our IEP in May, we talked about this. They can't deny her an education just because she's not trained, and I guess if she's not then the health-aide in the office would have to deal with dirty diapers. I am worried about this for A socially....I mean, I'm sure none of the other kids will be in pull-ups. She already has enough that is "different" about her (hearing aids, glasses, she walks a bit off-balance, etc) that I don't want yet another thing to set her apart from the others.

The thing is, there is a possibility that she can't even help it. Medically speaking, she may not even be able to feel the urge to go. If so, it's not her fault, which is good and bad---good, because then the lack of potty training isn't willful, and bad, because then does this mean she'll never be trained? We see her pediatrician in a few weeks for her well-child 5 year check up, and if there is no progress by then, I'll talk to him about it and maybe ask for a referral (to urology? to GI?) to see if there is testing to be done to see if this is the case.

At any rate, if anyone has any suggestions for potty training a child with special medical needs, please let me know. I know she's been through a lot, but this child has overcome EVERY obstacle that life has thrown at her so far, and I am determined to help her overcome this one.