1. She looks so pretty in her wedding dress. 2. The baby thing chocked me up. 3. The part about parents sometimes being the ones to keep their kids from living a normal life? So true. It's hard, yo. I see that already and my kid's not even 3 yet,
According to the website, it will be on HBO in October. My TiVo will be set.
My client, BD, was minding his own business, trying to grill dinner for his family, when the defendant, one Miss Playette, approached the patio door and promptly locked it, requiring my client to call the Mama, who was upstairs, on her cell phone to come to his rescue.
The Mama did, of course, rescue him, but not before laughing - leading to much mental anguish for my client - and taking this photo, which I submit to you as Exhibit A.
We ask, your honor, that you find Playette guilty and sentence her to a lifetime of having to tolerate parents that really should know better by now.
Yesterday, I had a conversation with our Service Blocker Coordinator.
She called me out of the blue. Let's call her "Angie."
When the phone rang, I had to make a quick decision: To talk or not to talk.
What's more painful? A conversation or a voicemail followed by frequent failed attempts to get her on the phone only to have that very same conversation?
So I answered.
She was under the impression that I wanted to talk to her. Grapevine and all that.
I told her no, that I was quite happy with my head stuck firmly in the sand regarding Playette's transition.
She'll be three in about two months and that's when you get the boot from Early Intervention and move into the Realm of the Big Kids. At that point, she is eligible for different services and Playette could go to public preschool if we wanted her to.
I don't know what I want.
But, what was funny to me what that Angie went into this set of questions. Self-help type stuff. At first, it seemed like nothing, just small talk, but then I was all, "Uh, Angie, what are these questions?"
She was filling out some form. Of course.
Damn, Angie, could you ask me first? I mean, really.
So, one of her questions, which apparently is attempting to determine whether Playette is going to be eligible for services after she turns three (she will be, no form required) was, "Can she comb her own hair?"
What?
I CAN BARELY COMB HER HAIR AND I'M 30 YEARS OLDER THAN SHE IS!
Gosh, I'm gonna miss Angie after we transition. A new Service Blocker Coordinator? However will I cope?
Say you find yourself in a position where you're having trouble conceiving a child. It happens to a lot of people and it's not easy. Emotionally and physically draining, to say the least.
You opt for IVF with a donor egg.
One day you find yourself pregnant. With twins! A boy and a girl. What could be better?
About four months in, you find some issues with the boy twin. He may have a heart defect. He may have Down syndrome.
It's not about abortion to me. Seriously. Regardless of my position, I feel such a huge loss here. It's like the parents missed it. The courts missed it. The newspaper missed it.
Parents of children with Ds don't miss it though. There's a big, fat issue here that isn't being addressed.
I've been learning quite a bit from reading about other people's experiences. In fact, Lisa gave me the term that I think best describes where Playette is currently: schedule trained. And the way we got her there is not too unlike what Ds New Mama is doing with her daughter. Except all I really know about Elimination Communication is that when Playette stops what she's doing and makes the silent grunt face, we know she's eliminatin'. I'm not sure how people catch a child pre-urine. We just seem to get lucky (sometimes) with that part.
Anyway, going back to the beginning, BD started putting Playette on the potty 1x/day (right after dinner) last year. I think I was away on reserve duty so it was May and she was about 22 months old. Since then, she's done awesome and will sometimes alert us to her needs by signing potty/toilet (we say potty with her). She is becoming more and more routine-oriented in many facets of her life, so it's no surprise to us that her post-dinner trip to the potty is the most reliable. Some people have a mint. Playette chooses to cleanse her palette a little differently.
When we addressed what we were doing at home with regard to making the transition from diapers to underwear at Playette's IFSP meeting in July, we got a lot of this:
Ah, blank stares to the sounds of crickets chirping.
Gotta love a good IFSP meeting.
If you've never been to one, feel free to join one of mine any time you want. If you're not stressed out at the end, you're bored to tears. Awesome.
So. Once our "team" came to, there was a lot of stammering which essentially resulted in zero support outside of the home (she's in daycare full-time) until about 6 weeks ago.
In the meantime, we continued with the post-dinner trips and then, one day a few months ago after a trip to Ikea, we upped the ante.
Not able to resist a deal, we bought 2 of these colorful pots at $0.99 each. One for the trunk of the car and one for the upstairs bathroom right next to her room. So with those and the cushy one we'd been using downstairs and the cute little mini-toilets at daycare (I don't know what I said differently one day, but they finally caught on and started offering her the toilet), we started seeing some more progress.
While this has been a long road, it really hasn't been a stressful one. We've taken it verrrry slowly. No pressure.
Sure, we get frustrated when she doesn't ask to go and instead we're alerted by a strange smell in the room. Who wouldn't?
But we enjoy the heck out of the successes. Two weeks ago, when we were out to brunch on Easter, she signed potty at the table and actually meant it. I'm telling you, this little girl is better than me with the whole using a public bathroom thing.
Do I think that she'd be rocking some Dora drawers by now if she were typically developing? I sure do. But she's not and it's just going to take longer. We're ok with that. In fact, good or bad, I never really expected her to be out of diapers by age 3. I mean, when we moved to CA, I learned that diaper reimbursement was available essentially once a child was out of the early intervention program and I figured that's just the way things were. It was going to happen later and that was that. I've seen some really bright kids make the transition later for varying reasons. They all get it eventually and it's so not a race.
Honestly, now what I fear is that we've simply given her options. Diaper, pull-up, or potty? I don't think she minds where she pees so eventually we just need to bite the bullet and give panties a try. Scary thought.
But, our weather isn't very conducive to the run around nekkid approach, so I can't say that we really know how to take the next step anyway.
So we wait. And cheer when there's #1 and #2 in the pot. We dance (our own unique dances). We wash hands and then we play. Until the next time we see the silent grunt face. At which time we grab her and run.
Well, the book production is coming right along and if you'd like one, here's the info:
Pre-order your signed copy for a special price of $19.95 (regular price $29.95).
All profits from sales of this book on this website will be donated to organizations which support all aspects of the Down syndrome community. From sales on this site, The Other Person is You{foundation} will donate a minimum of $5.00 per book. A list has been compiled on the website to select from which will allow you to direct money from your book purchase directly to the organization you support. Please enter the organization to which you would like to direct your support when making the purchase on the website.
The more pre-orders, the lower the cost of printing, and the more money that can be donated with each book purchased. Pre-orders will also help with funding the continued effort of creating the documentary. I'm Down with You will ship in August.
And yes, it looks like Playette will be featured. WOOT!
I look at the pictures I've yet to upload from the camera and think about how, when I took them, I planned to share them here and have them illustrate precious stories.
I review the drafts that sit in my folder, lacking the one or many details that keep me from clicking the orange "Publish" button.
But, you know?
It's just one of those days.
And it's been that way for a while.
Not bad, really. Just stressful and confusing and tiring and sick and anxious and owing instead of being refunded and...life-filled.
It's really not easy, is it?
This whole being a grown-up thing.
I know that I'm fortunate. I hate to complain.
No. Wait. Not true.
I think I'm ok with complaining. I just don't like when people tell me that I shouldn't.
Someone in my Ds support group recommended an episode of the children's show, Caillou. I used to watch that show every morning with Playette while I was doing her hair so I figured I'd check it out. Apparently, the little boy, Alan, has Ds.
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