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Road Map

I know I'm way behind the times, but I finally did read Jennifer's Roadmap to Holland.  Wow.  What struck me most about it was just how remarkably vivid it was.  My own memory of those early days after B was born is pretty hazy, especially of her (mere) four days in the NICU, but Jennifer captured every nuanced emotional detail, and I was transfixed.  This experience is so emotionally complex and I found it almost shocking to see my own private thoughts and emotions expressed by someone else, much more vividly and eloquently than I could have expressed them myself.  Jennifer, what have you been doing inside my head?  There is a moment when she describes reading the twins' chart in the NICU.  She hadn't had enough breast milk, so Avery had been given formula, and she sees the minuses marking all of the times that she wasn't present.  This was the most compelling description I've ever seen of that desperate not-enough feeling.  I got teary reading it as I remembered how I felt when I didn't have enough milk, which, looking back, was a stand in for the powerlessness I felt in the face of the diagnosis.  I had been overwhelmed with that "not-enough" feeling even though I didn't have another child miles away and another premature infant to care for!  I also remember how desperately I wanted to be holding B in the NICU while also wanting to get the hell out of there as fast as possible.  I had forgotten the tension of that, but Jennifer nailed it perfectly.  And that ubiquitous Babies with Down Syndrome book!  So disheartening. 

Frankly, I'm not a huge fan of the Welcome to Holland thing.  It's nice and all, but it all seems too tidy to me.  Or maybe it's just that I received so many copies of it when B was born that it quickly came to feel clichéd.  Or maybe I just resisted the pressure to feel comforted by it because I'm ornery that way. Whatever.  I love that Road Map to Holland is not so blithe.  Although it is painfully raw at times, I think that as a new mom, I would have taken more comfort in it than in its namesake.

Boston?

So... who all is going to the big Boston conference?  I think I may try to go on my own, without the fam.  If I can pull this off, I'm going to be wanting to party with my friends inside the computer.  Uhm.... do I still have any friends inside the computer?  I mean, I know that I'm not a very good blogger and all, and I don't update all that often, and I haven't been leaving comments regularly, and well, I'm just kind of lame all around, but we're still friends, right?  I mean, friends enough that if we happened to be in the same place, we'd want to meet and have a glass of wine (or whatever you mormons are into), right?  Or would you be too busy with your real friends to make time for little 'ol me? 

Anyway, I'm going to decide in the next two days.  If anyone wants to share a hotel room, let me know.

-b

Update: 26 months

As David Byrne predicted, sometimes I do ask myself, "How did I get here?"  The question always comes to me in his voice with a vivid image of him jerking around in a very large suit. 

As she rounded the corner to 26 months old, Miss B decided it was time to take a step. Two in fact.  From her cute toddler-size upholstered chair across a vast empty space to the couch.  This came just in time for a certain mother who was starting to get discouraged.  We've been trying so hard to get her to walk.  For over a month now she has been able to do it while holding on to us with only one hand, although sometimes she resists and gives us the noodle legs.  Even though it is always faster to carry her, we've made an effort to be patient and make her walk from room to room and from the car up the walkway to the front steps.  When the weather has been good, I've made time before dinner to practice walking out on the sidewalk. (The neighbors like to come out and cheer her on.)  Still, she has not seemed interested in letting go.  Our OT hasn't offered any specific advice and has just encouraged us to keep giving her as many walking and standing opportunities as possible.  Looking for more direction than that, I checked in with my gross motor skills in Down syndrome book, which suggested having her lunge toward a toy on the sofa.  So, I tried that.  I set her chair about a foot away from the sofa and put various desired objects (a doll, a book, and yes, I'll admit it, even a cheezy poof) on the sofa.  B would stand up, fall forward into the sofa and grab her prize.  Over the course of a week, I gradually moved the chair slightly further away.  For several days, she would still lean forward and lunge without balancing her weight over her feet, only moving her feet after she had a secure hold on the cushion, but then one time she stood up and stayed perfectly upright, taking two little steps.  (Edited to add that we hope to win these adorable shoes from Prince Vince in celebration of her major achievement!)  A few days went by and then she did it again, and then another time she did it again.  Then I saw her take two independent steps from the door that she had been holding onto over to the stereo speaker.  There was no toy or treat on the speaker -- she did it only because that's where she wanted to go, and I was thrilled that she succeeded because unlike the sofa, it has awfully sharp corners.  I have videotaped about 20 trials of the chair-to-sofa move in hopes of getting a really good clip to share with the grandparents, but I think there's some kind Heisenberg thing going on here because such attempts to capture the phenomenon seem to fundamentally alter it. 

Miss B must be going through a growth spurt because her appetite is suddenly enormous.  For breakfast, she gets yogurt (which she can eat with a spoon on her own, freeing me up to make my first round of espresso) and then half of a waffle.  Lately she has been signing, “all done” after only a few bites of yogurt and then pointing to the freezer and saying, “Eh eh eh!”  in order to speed things along to the waffle part.  (You didn’t think I was actually making waffles from scratch every morning, did you?)  She loves waffles so much that she now points to the freezer and says, “Eh eh eh!” with every meal.  We couldn’t find a sign for waffle, so we taught her the sign for pancake.  She picked it up immediately.  For lunch and dinner, she’ll eat whatever is handy:  sliced turkey and cheese (she prefers muenster to swiss and she spits out reduced fat cheddar while looking disgusted), peanut butter and jelly, any kind of pasta that I can drum up, beans, eggs, or take-out pad thai with tofu.  The daycare tells me that she is eating everything they give her and is taking food from the other kids.  I was momentarily concerned about this behavior, but I’ve decided to just let it go for now as there isn’t much I can do about it anyway. I think I said, lamely, “Oh.  Uhm.  Don’t let her do that?” For now, I’m using her interest in food as a way to teach her new words.  She just learned to say “chee” (cheese).  She has also learned to say “ah”, which in context clearly means “hot.”  While I am very careful to cool off hot food before I give it to her, T hands her a waffle right out of the toaster and says, “Careful, it’s hot.”  She now touches all of her food to determine whether or not it is ah and if it is, she says, “ah” for awhile while pointing at the food, until it eventually cools down and then she eats it. 

People always ask me how she feels about having a little sister.  It’s hard to tell.  She smiles at Mojo Jojo and likes to pat her, and sometimes she’ll try to stick a pacifier in her mouth and when it doesn’t stay in, she’ll put it in her own mouth instead.  She doesn’t scowl at her, and doesn’t seem to get upset when I pick her up.  She’s playing with her doll more these days, which gives me a little insight into how she sees babies. For a while now, she has been giving the doll a bottle and patting its back. I had demonstrated this for her, so it wasn’t clear to me if she was really pretending that the doll was a baby or if she was just copying what she’d seen me do with the doll.  Copying is great --  we’re always trying to get B to imitate more -- but pretending is a more creative and sophisticated sort of play and I want to encourage it.  Lately she’s been adding cute little slurping sounds to the bottle routine, and now she’s sticking her doll in Mojo Jojo’s car seat and rocking it. 

We have also had some important musical advances around here.  For some time now, Itsy Bitsy Spider has been in heavy rotation.  It is a magic spell that can suddenly lull this willful toddler into compliance at any moment.  Hair brushing is no problem as long as you’re ready to sing Itsy Bitsy Spider.  She has most of the choreography now and likes to say, “Down” when we get to the rain part.  In the past few weeks, I’ve noticed her waving her hands around at random moments and it seemed like she was signing something but I couldn’t figure out what it was.  Then one day I got bored of Itsy Bitsy Spider and decided to sing Wheels on the Bus instead, and she immediately started doing that same hand waving thing.  So all this time she had been trying to submit a song request.  She knows about half of the choreography for Wheels and likes to say “All” with us. She was probably bored with that damn spider too. 

Whine

With Mojo Jojo in tow, I took B in for an ENT appointment today.  There was a long wait, which meant that there was plenty of time to spend in the waiting room observing other children.  And while it started off well, by the end I was having one of those moments.  I've written about these before.  The moments when everything is going along fine and then suddenly I'm sad about B.  Grief sneaks in. 

She's different.  I've known this for a long time, of course.  But what hit me today is that it's not simply a matter of her delays.  The evaluations that place her, as I predicted, at about 12 months developmentally for language skills and 19 months for fine motor skills, give me this sense that she's just like other kids except delayed, but really, she's not.  Today she was waving hello at everyone and grunting, "uh uh uh."  It's the sound she makes when she wants to get someone's attention and I'm so used to it that I don't even notice it anymore, but today I realized that it's kind of weird.  I mean, she can say something much closer to "hi", but instead she was waving, smiling, and grunting.  The other moms were nice and smiled and waved back, but I could feel them watching me and I felt self conscious, and for the first time, I realized that I was feeling self-conscious about B's behavior.  It wasn't just the grunting.  I gave her some paper to play with and she kept putting it in her mouth.  I'm trying to teach her not to put everything in her mouth, but she does it anyway and I end up saying "No" nonstop or taking away the very thing I just gave her to keep her occupied.  (Although I have to add that when she wasn't putting it in her mouth, she was trying to put it on top of her head like a hat, which was damn cute if I do say so.)  So after I took the paper away and she was getting restless, I thought maybe I should use this time well and practice her walking, since it was a huge waiting room and there was plenty of space.  But she did not like that idea and she flopped down on the floor and rather than tell me, "No!" which she is able to do and which would have been appropriate, she did her whiniest grunt.  Loudly.  And people turned to look.  Or maybe they didn't and I just felt like they did.  And I found myself wishing that I had brushed her hair better and dressed her in something cuter and that I hadn't tried to make her walk, thus drawing attention the fact that she can't. 

I was feeding J a bottle (I'm really bad at public nursing) and holding B on my lap, and she was waving at this adorable little girl who must have been just over one.  The girl walked over to us and was smiling.  I think she wanted to see the baby, so I said something about the baby drinking her milk.  I was totally welcoming toward this girl and B was all smiling and waving, but the mom kept urging her to come away and not bother the baby while she's eating.  It was so obvious that we were happy to talk with her, so did the mom really think she was being a bother?  Maybe. Some moms are quick to think that.  Or maybe the mom didn't want her to go up and talk to strangers like that.  Reasonable enough.  But of course I end up wondering if the mom felt uncomfortable because of B. 

And this is what I hate about the special needs parenting thing.  It's not B herself -- she's great, usually.  The whiney grunting thing is annoying, but every kid whines and it's always annoying, so I don't hold that against her.  It's that it adds all of these layers of interpretation to inconsequential interactions.  It’s exhausting.  And I feel like I have to put on this show.  I don't want people to pity me, and I want them to feel positively toward people with Down syndrome, so I have to present an image of What It's Like.  Because that's what they're all wondering, isn't it?  What's that like?  And even though lots of other kids might be whiney at a doctor's office, when my kid whines (in her special way), I have to carry the burden of not wanting other people to think that this is What It's Like.  And if I'm in a hurry and don't fix up her hair, I end up feeling like I've let down the whole DS community by not being a good enough advocate, even if my own hair is an unshowered mess.

I’m not sure I’m articulating this very well.  I just want us to be us, and I don’t want to feel like everywhere we go, we stand for Down syndrome.

And as for the whining?  You can see where she gets it from.

Goodness

1.  I met my last goal, just in time. 

2.  J has started sleeping for up to five hours in a row and screaming much less (Yay Zantac!)  I am a better person as a result.

3.  B said "chee".  Since at the time we were asking her if she wanted cheese, her meaning is pretty clear.  This is the first new spoken word we've heard in many months.  Now if we could just get her to eat something besides cheese...

4.  J giggled the first of what I hope will be many giggles.  There is nothing in the world like that sound.  I had been starting to wonder if maybe she just doesn't have a very good sense of humor.