Potty training.

I have been crowned the household potty training queen. Both of Edda’s other main caregivers, Jeremy and Yvonne, are not as excited as I am about getting Edda potty trained. I think girls with Rett Syndrome who are potty trained are mostly timed-trained, which means they’ve trained their families to take them to the bathroom every 2 hours or so. We are quite badly trained, I’m pretty sure Edda could be timed trained if we could get our act together.

I’ve downgraded my definition of potty training (for now that is), I’m just hoping that I never have to change another poopy diaper ever again, I totally don’t mind the pee diapers, it’s just the poopy ones that are a PITA – literally and figuratively. They are so huge and messy and just plain difficult to deal with, I just hate it, hate it, hate it.

A few weeks ago, I had a string of 4 or 5 days, where I had good luck and every day I coordinated well with Edda where she went #2 in the potty right before bed. I don’t ask school or Yvonne to document the #2s, so sometimes it’s hard for me to tell when she went last. Edda does not give any indication that she has to go, I just put her on the toilet when I remember to and then I wait for 3-5 minutes, because that is how long it takes her to get going. (This is the reason I’m the potty queen, Jeremy doesn’t like waiting the 3-5 minutes. I’m like 3-5 minutes of just hanging playing patty cake with Edda to not change a poopy diaper? That’s a fair trade!)

Our latest triumph is what I call the “traveling poop” – where we are actually out and about and Edda gets a poop into a potty. It’s quite a scene – I use the whole handicapped stall – you’ve got the wheelchair, Edda and me and all of our crap, which means 2 winter coats, a huge purse and backpack, one diaper that has been used, one diaper that is clean and then we are wiggling around trying to not to touch anything. I’ve had this happen 3 times in the past year, once on a trans-continental flight (which was so impressive to me that I celebrated with an extra bag of Doritos), once at church and one this past Sunday at Union Station. I love the thrill of victory!

I don’t want to give the impression that we are getting 100% of the poops. We still sometimes find ourselves out in public places with a full diaper and a yucky public toilet stall and at home, even when I’m paying close attention, I’ll miss the signs and I’ll need to change her, but I feel like we are making progress a little bit at a time.

Go Edda!

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Friends.

Vince has been having trouble finding a group of close pals at school. It’s pretty painful to hear since it so starkly contrasts with kindergarden at his old school, where he had a close group of diverse friends.

We actually had the pleasure to meet up with K., Vince’s friend who moved to upstate NY at the same time that we moved to a new neighborhood. They drove 4 hours each way during Thanksgiving weekend to see us at Jeremy’s parents’ house. It was really sweet to see them together again.

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The crap collection area.

We are trying to tame our clutter buy purchasing various “organizational systems” from IKEA. Each time we come up with a new organizational plan, I feel so hopeful and excited that once the shelf is installed, my life will be orderly.

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Emy, Jeremy’s sister, was suppose to come to town last night because the organization she works for is somehow associated with a performance at the Kennedy Center that is happening this weekend, but an ice storm hit NY yesterday, all the trains were canceled and besides that, her car was stuck in the garage behind an electric garage door opener. So she’s trying to make it down today for tonight’s performance.

At home with the kids.

Our sitter, Yvonne, is in Miami for three days this week. On Wednesday, Jeremy did the morning and I came home just in time for the school pick up. Today, Jeremy stayed home and tomorrow I will stay home.

Since I work, I often do not get to meet a lot of the folks in my children’s lives. For example, Wednesday was the first time I met Edda’s afternoon bus driver and bus aide and of course, I’ve already forgotten their names.

Tomorrow I’m going to go to Vince’s school – it just happens that they have an augmentative communication program at the school and I’m going to see what it’s like and if it is appropriate for Edda. The requirement for entrance is to be able to do 50 PECS/pictures or symbols on an ACC device and Edda can not meet that goal right now, not even close. What can I say, it’s a struggle – this communication thing. It often depresses me and I think I can do better. Sigh.

Some of the kids in the augmentative communication program mainstream into Vincent’s social studies class and he often partners with a little boy in a wheelchair who uses an augmentative communication device we call the Big Box of Words. I have never met this little boy, but it gives me great pleasure to imagine Vince with this other little kid in social studies class together figuring out how the US government works.

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