Trisomymommy

Update: 32 months

We never did anything about the sign.  We asked him to move it a couple of feet and he said he'd "look into it."  It has not been moved.

B just turned 32 months old, which means that she's only got four months left in early intervention, which means I really have to face up to preschool.  I've been avoiding dealing with the next stage of services.  It sounds like it requires paperwork and meetings and stuff like that, stuff which I loathe.  But, it's time.  I know it's time.  Sigh.  I'll call tomorrow to get it started.  Okay?  Really.  I'll do it.  I promise.  No wait, tomorrow is a holiday.  Tuesday.  I'll definitely call Tuesday.  I mean it this time.

When not having a meltdown from refusing to nap and getting overtired, B is being delightful.  Here's an example.  We went to our buddy walk, and this year B was big enough to get a little more involved.  They had one of those giant inflatable bouncy things and B got to go inside.  She's not able to jump yet, but she sat in there as the other kids jumped and bounced her around, and she laughed.  I'm not talking about a simple little heh heh.  No.  I'm talking about wild peels of unbridled joy.  The kind of laughter that makes everyone walking by stop and look and then start laughing themselves. And another example:  Later on that day, some older girls (with DS) were doing a little dance performance, so we went over to check it out.  The girls were all dancing in a circle and waving their arms around.  B got very excited at the sight of these girls moving to the music.  She pulled away from my dear husband, dashed out into the middle of their circle and started waving her arms exuberantly.  She was about half the size of the other girls, standing there in her little blue and white dress with her too-big buddy walk shirt and, of course, her pink chuck taylor's, which, when paired with a dress, give her some sort of femme-punk look, and trust me, she was outrageously cute.  It was this spontaneous moment in what was otherwise a rather scripted and dry little performance, and it made everyone laugh.  We retrieved her quickly so she couldn't steal any more of the show from the other girls.  I'd been wondering if maybe we should try to find a little dance class for her and apparently the answer is yes. 

Watching her that day, I was struck by the phrase "suffers from Down syndrome."  Was I ever ignorant enough to think that she would suffer?  This is so not suffering.  And I know that it may get harder for her later in life, that there may be times when her differences cause her some pain, but I also know that she is the happiest person I know, and that such a temperament is a great gift. 

She's now wearing Sure Steps orthoses and is walking pretty well.  She was on her way with the walking anyway, so I don't know how much the new orthoses are contributing, but her feet are definitely better positioned now.  Before she had been pronating so badly that she could almost get her inner ankle to the floor.

In other news, she has a two-word phrase.  She kind of had one before ("Bye dad"), but I think that was just imitation.  This new one ("shoe off") she seemed to put together on her own.  She doesn't actually say "off", she says "ah", but we know what she means.  Unfortunately, she also uses "ah" for "on" and "hot", so we have to rely a great deal on context, but that's okay.  She's talking a lot these days, but often we can't figure out what she's trying to say.  Sometimes she looks discouraged that we can't tell what she means, so we just try to respond as if we understand.  When she says, "Arywalyarrramgh," I respond with, "Oh?  So you think the Dow is poised for a rebound?"  Because it's as good a guess as any, and because I know that she's an optimist.

Edited to add:  Wow, right after I posted this, the Dow had the biggest point gain in its history.  Soon I'll have to start charging extra for B's stock tips...

Neighborhood politics

Okay, let's just say you don't like your next-door neighbors all that much.  You get along fine, you try to keep the peace, you participate in reciprocal favors -- an egg here, a tool there -- and have them over or go to their house for the occasional neighborhood gathering, and while you like the wife of the couple just fine, you find the husband to be the biggest bully you've ever met in adult form.  He is the self-appointed enforcer of all local standards and customs.  He is like a 14-year-old girl in the degree to which he relishes trashing everyone else behind their backs.  He didn't like the looks of some new guys who moved in down the street (renters, gasp!) and so he went over and gave them a cake.  In his police uniform.  Just so he could introduce himself, welcome them to the neighborhood, and let them know that they were being watched.  I think this must be the most aggressive welcome cake ever given.  Sometimes he'll mow the little patch of grass in front of our house if it gets too long for his taste.  Trust me when I say that this is not a gracious gesture.

So, it turns out that we and the neighbor plan to vote for different presidential candidates.  And while I respect his right to put a campaign sign in his front yard, I am flummoxed by his decision to put three (3!) out there and to put one of them just an inch from our property.  It kind of looks like the sign is in our yard.  It faces our yard rather than the street.  It seems aimed at antagonizing us. 

I could go put up a campaign sign to establish my true political identity for the neighborhood, but I hadn't planned on advertising like that and I resent being bullied into it.  So, I'm trying to figure out some way to humorously comment on his un-neighborly behavior without leading to some kind of escalation. 

Here are some ideas I'm toying with:

1.  Put up a sign that reads, "That is not my sign," with an arrow pointing to his sign.  This draws attention to his childish behavior, but seems kind of petty.

2.  Put up a sign that says "Policemen for (my candidate instead of his)"  and try to make it look like it is in his yard.  Such a co-opting of his identity seems too direct and likely to raise more ire than I care to manage.

3.  Put up a sign for Che Guevara or some other un-American red commie bastard, just to mess with him.

4.  Put up a sign with a gay / lesbian theme.  Because he is homophobic.

5.  Keep the peace.  Do nothing.  Practice deep breathing exercises when approaching the house.  Remind self that this will all be over in about six weeks.

I hereby solicit your advice and ideas. 

Update: 31 months

Miss B turned 31 months last week, and to celebrate, she had surgery. The ENT replaced her ear tubes, one of which had fallen out anyway, and removed her adenoids.  We had been hemming and hawing about the adenoid surgery for about a year and finally agreed to it, since she was going under anyway.  It's supposed to help with all of the sinus infections, or something.  I guess some kids get sick less often after having it.  I don't really know, but enough different doctors recommended it that I went along with the consensus.  It all went smoothly. I held B shortly after she'd come out of the anesthesia, and that was the roughest part.  She was thrashing about, crying and trying to pull on her IV.  We had bedtime bunny with us, but bedtime bunny was no comfort.  In fact, I thought she was going to kill bedtime bunny.  The nurse brought in a Dora DVD, but it seemed to make B even more agitated.  (I wonder if we've successfully conditioned her to hate Dora?)  Anyway, that part was hard on both of us, but she recovered pretty quickly.

We're trying to teach B her colors. Our nanny, who is a bit of a drama queen and tells me more than she should about her personal life but is quickly forgiven because she is so good with B, started on this by giving B two tupperware containers, one with a red piece of paper lining the bottom and the other with a blue piece.  She then gave her uncooked pasta pieces which they had painted red or blue and tried to get B to sort the pieces into the right containers.  She also held out m&m's and had B pick out (and eat) the red ones and she made sugar cookies with red or blue frosting.  I'm not sure if B gets it or not.  She'll get it right several times in a row and then just when you think she's got the concept, she'll make a whole bunch of errors.  It seems like it shouldn't be that hard, but what do I know?  The nanny was convinced that she understood it, but then I tried some of these tasks and noticed that B was watching me very closely as she started to respond.  She would hold the pasta over one container and then the other and let go as soon as she saw me start to respond.  We may have a Clever Hans on our hands. 

Because I'm a dork, I decided to go the high tech route and I made a powerpoint slide show that presents a red and a blue shape on each slide.  I tell B to touch the red (or blue) one, and when she does, I cheer while I discreetly click the mouse and then a little frog appears on the red (or blue) shape and dances to this cheezy song that B loves.  When she gets it wrong, I just tell her "no" and repeat the instruction, she corrects herself and I praise her, but she doesn't get the music or dancing frog.  This is an example of discrete trial learning, which I learned to do when I was a grad student and was working part time with an autistic girl doing behavior modification therapy, which I guess is the same as what they now call ABA.  Since B was born, I've often thought of that experience and wondered if it would be good to try this approach with B.  This is my first attempt.  I'll keep you posted.  Let me know if you want the powerpoint.

I added the dancing frog because it's becoming clear that B is very, very into music.  I know that most kids like music, but I kind of wonder if the love of music might be a bit more extreme in my kid.  She loves music so much that she finds music in things that I didn't even know were musical.  For instance, our espresso machine makes a kind of rhythmic thunk thunk thunk noise, which never struck me as very entertaining until B started dancing to it.  She sits in her little booster seat, rocking out, while I stand there all bleery-eyed, awaiting my morning fix. 

She's had a bit of a language spurt recently and is using speech to get more of her needs met.  For instance, when she wants juice, she'll say, "Jew!"  I can imagine social situations in which it would be rather awkward to have her going around saying "Jew!  Jew!  Jew!" but this has not yet been a problem.  As always, she is good with the negatives.  One time she denied the accusation that she was messing with her glasses by saying, "No I don't" and one time she turned down an offer for a stroller ride by saying, "Not now."  The other night she kissed bedtime bunny and then said something that sounded a little bit like "I love you."  Maybe bedtime bunny needs to extricate himself from this dysfunctional relationship. 

B and me, on politics

Miss B is one of those undecideds who is easily swayed by the excitement of a political convention.  She didn’t stay up late enough to see the headliners, but was quite smitten with the warm-up speeches, despite their painfully stilted deliveries.  Every time Nancy Pelosi would pause for forced applause, B would clap wildly and say, “Yay!!!”  So, she seemed to be leaning democratic, but then she gave the same warm response to Carly Fiorina, whose speech was hardly deserving of B’s adoration.

And Sarah Palin – wow.  Just…  wow.   Where to begin?  Here are my many scattered thoughts on Palin:  I don’t care about her daughter’s pregnancy, her son’s chromosomes, or whatever she can do with a moose.  I don’t think that accepting the appointment necessarily makes her a bad person or a bad mother.  It was a brilliant career move for the ambitious sort.  If the political thing doesn’t work out for her, she will be hugely successful on conservative talk radio, which will enable her to support that growing family very nicely indeed.  I think that the real reason people are drawn to her is that she looks like Tina Fey, and secretly, we all want Fey for veep.   (Someone once told me that I reminded them of Tina Fey, which I took to be a huge compliment, but nobody has ever likened me to Palin.  I’m thinking that I could do a pretty good impersonation of her and that if I can’t get around to cutting my long hair, maybe I should try to make it poofier.  I know what I will be for Halloween.)  Okay, that’s not the only reason.  Palin wrapped an entire convention around her finger with a confident, snarky speech and a fantastic delivery.   Her charisma was extraordinary.  Suddenly McCain’s pick did not seem so laughable and desperate after all.  I do not believe that having a baby with DS means that somebody is a good person or a good leader (I am not an especially good person and I would suck at the vice president job), and I suspect that somebody who prides herself on lowering taxes and cutting programs is not likely to be the best advocate for those with disabilities. 

That said, I smiled ear to ear seeing sleepy Trig up there before an audience of 37.2 million viewers. 

Update: 30 months

How did the little miss get to be two and half years old?  Just by being, I guess.  For two and a half years.

Last month we moved her from a crib to a toddler bed.  She had been working on climbing out of the crib.  When she started getting her right foot up on top of the railing, I realized what a long fall down that would be and decided that it was time.  The evening we put her bed together, she kept going over to it and spreading herself out on it as if to establish her ownership.  She seemed very excited and proud.  I was concerned that she would not stay in bed, but this hasn't been much of a problem.  At night, we read stories and then put her doll to bed and then she voluntarily climbs right in.  We listen to Segovia and talk about the five little monkeys.  Well, I do most of the talking, but she does the corresponding hand movements and sometimes she'll chime in with "Noooooooo" when the doctor says, "No more monkeys jumping on the bed."   I can tell when she's close to falling asleep because she stops shaking her index finger at the imaginary monkeys.  Then I just sit next to her bed for a few minutes until she's asleep or just very, very calm.  Sitting in a darkened room with this drowsy little girl, all tucked in to her tiny little bed, is one of the sweetest moments of the day.  She stays in bed all night, as far as I know.  She wakes up in the morning, gets out of bed, opens the bottom drawer of her dresser, pulls out all of her dresses, then closes the drawer (very conscientious, this kid), and then starts putting on her dresses over her pj's.  She's happy to entertain herself like that for awhile, which sometimes translates into more sleep for me.  Nap time can be more of a challenge, and always has been.  Sometimes she'll lie down in the bed, act all sleepy, and then whisper, "Bye bye."  Taking my cue, I'll leave the room and within a minute I'll hear that drawer opening as the fashion show resumes. 

Speaking of the monkeys, I took her to the ENT last week.  As we were wrapping up the appointment, I said to B, "He's a doctor.  What does the doctor say?"  The ENT looked quizzical, but B knew where I was heading with this and shook her index finger.  "That's right." I said.   "He says, 'No more monkeys jumping on the bed.'"  Since the appointment had been about ear tubes rather than non-human primates playing on furniture, this might have been utterly baffling to him, but he went with it. 

We went to her third appointment with the new speech therapist.  B tried to do something with a toy and succeeded, and then made some sort of exclamation, as she often does.  The ST said, "That's right, you did it."  Apparently the ST has a magical ability to interpret B's babbling and what B had said was, "I did it!"  I was a bit skeptical.  B says stuff all the time that we can't understand and sometimes I think we read too much into her noises, hearing whatever we think made sense given the context.  Besides, there are so many words and phrases we work on with her (How about "Mama?"  Can I please get a "Mama?") and this is just not one of them.  When we congratulate her, we say, "You did it!"  but it seemed unlikely to me that this kid, who has maybe 10 spoken words, is coming up with a full sentence including a pronoun reversal.  But the speech therapist reminded me that she had modeled that phrase for B in the last session, and then suddenly B came out with it again.  It was perfectly clear and contextually appropriate.  A couple of days later, she climbed all the way up the stairs while holding on to the vertical bars that support the railing, and when she got to the top, she yelled out, "I did it!"

What does it say about this winsome little imp that after all of the work we put into teaching her words and phrases that we think are important, all of the drilling and slow repetitions and hand wringing (it's "mmmmmmmaaa mmmmmmmmmaaaaaa") and all of the discouraging silences, what she picks up spontaneously is an expression of self-confident triumph?  She teaches us what's important.

Jumping Jo

I want a doorway hanging jumper thingy.  Not for the baby, mind you.  She has one.  I’m jealous and I want one for myself.  I wonder if this doorway jumping baby gear created the psychological conditions that eventually lead to the bungee jumping craze?

Baby Mojo Jojo has turned 7-months-old.  At 16½ lbs, she’s on the small side, which is convenient for those of us who carry her around.  She’s sitting, although not all that steadily.  Our pediatrician is not concerned and even seemed impressed that she puts her hands out when she’s about to fall over.  She likes to say “Ba ba ba ba ba ba ba ba ba ba ba ba.”  And then sometimes she’ll repeat it.  She wants to stand.   She’s been trying to crawl, but usually ends up rolling instead.  The other day, she sort of crawled forward just a tiny bit.

I love to see her learn new things, but I have to admit that it’s a little complicated for me.  She does it so effortlessly, and often she just starts doing new stuff before I even have a chance to stress about the fact that she’s not doing it yet.  So, she crawls forward ever so slightly and we give a little cheer and that’s it.  It’s just not that big of deal.  It’s nice, but there’s a kind of ruefulness to it as well.  When B first managed to propel herself forward, she was nearly 11-months-old and it was a powerful moment for our little family, described here.  I remember getting a bit teary over the accomplishment.   The developmental differences between my girls are starting to show now, and it makes me a little sad that B had to work for so much longer to achieve these same goals.  One day, and it won’t be too far off, J is going to lap her older sister in development.  

I wonder how the family dynamics differ when the child with DS is the oldest?   For most of my friends in the DS circles, the kid with DS is the youngest.  I can see how that would work.  I imagine the older kids just thinking of their sibling with DS as the baby of the family, feeling protective toward him or her, and always understanding him or her to be someone that needs some special care.  But in my case, there’s going to be a reversal of sorts when both daughters realize that the younger one can do things that the older one can’t.  I wonder how that will play out and how best to handle it.   

I guess I’ll know when I get there.

Update: 29 months

A couple of weeks ago (I'm late on the update) Miss B turned 29 months old.  I had to stop and calculate that.  I no longer know off the top of my head exactly how many months old she is. 

We spent a week visiting my parents.  They live in a large ranch house that seems to be conducive to B's gross motor skill development. Last year she spent a great deal of time in a long hallway with thick carpeting, and that is when she learned to really crawl.  This year, the same hallway taught her to walk.  Actually, she has been walking inconsistently for several months, but our vacation there brought a real shift.  She now prefers walking to crawling.  She still stumbles often, but she gets right back up.  If I try to hold her hand while she's walking, she now lets go as if to tell me to let her do it herself.  Upright, she looks much older to me.  I have to admit that I have felt some pangs of sadness over that.  I'm thrilled that she's walking, of course, but somehow it makes the scary future seem more imminent.  She's going to grow out of early intervention soon and into the school system and then into the rest of her life, and I will not be able to protect her so much anymore.  Also, by making her look older, it highlights some of the ways in which she is so far behind other 29-month-olds.  But still, it's good.  To celebrate her walking, I bought her a pair of pink converse high tops.  What would Chuck Taylor say?

It's becoming clear that B is a girly girl.  She likes to play with her baby dolls and can spend a great deal of time covering them up with blankets and signing "sleep."  She always goes for the little play house that they have at a nearby playground.  Yesterday she stood at the play sink for awhile and eventually I realized that she was doing dishes.  But the real kicker is dresses.  She has several cute dresses that used to belong to her cousin, but I've never put them on her because they are hardly the most functional fashion for crawling, and I'm all about function.  (Really.  Sometimes I wear clogs.)  But as she started to get the hang of walking, I thought I'd discourage crawling by pulling out the dresses.  Turns out my girl loves dresses, especially pink ones.  When I leave her alone in her room, she'll find her dresses and put them on.  All of them.  At the same time.  She doesn't usually manage to get her arms through the sleeves, so they don't stay on very well, but it makes her happy. Yesterday she went around wearing a dress, and then a swimming suit on top of it, and then another dress on top of that.  It's a look.

We have bailed out of speech therapy through our early intervention program and started seeing a private speech therapist who is much better.  Unfortunately, our insurance won't touch this.  She's really good, but is she good enough for this cost?  I don't know yet.  I asked her about the signing.  I feel like it may be time to quit signing.  B has a few words and is slowly picking up some more, but if she knows the sign for something, she refuses to say the word.  I think signing has become a bit of a crutch for her and for us, and that as a family we really need to be more aggressive about speech.  The therapist whole heartedly agreed that we should focus all of our attention on getting her to speak.  So we still accept signs from B, although we usually try to get at least some sort of speech sound along with it, but we're not signing and we're not teaching new signs.  I'm glad that we did the signing that we did, but it was meant to be transitional and so we're going forward with the transition.  (For the record, I'm not making any sort of statement about what anybody else should do, and I know that all of the research shows that on average, signing doesn't inhibit speech.  I'm just saying that for this kid and this family, it seems sensible to focus solely on speech for awhile.)

Lately we've tried to work on sharing.  B has become rather possessive of toys and things.  Sometimes she'll pick up several items (book, toys, dresses) and clutch them desperately as if she thinks we're all out to steal them away from her.  It's a problem because she can't walk or climb stairs very well while trying to maintain her grasp on so many treasures, so she ends up in a real bind when it's time to go eat or play outside.  She refuses to let go, and yet she can't go anywhere.  It's like she's living in her own little monkey trap and she gets quite upset.  She doesn't always do this, but at least once or twice a day she goes into this mode of desperate hoarding.  I'm guessing that this is one of those things that will pass.  Her little sister is now getting really into books and toys, and sometimes B will grab these things out of Mojo Jojo's hands.  We've try to talk about sharing and turn taking, but who knows if it's really getting through.  Maybe it is.  Yesterday while I had my back turned, B put some of her very own rigatoni into Jo's seven-month-old mouth.  Yay for sharing.

Superstar Zen Mothericious

Just a brief post to say that I am superstar zen mothericious.  I did the trip, there and back, with no major difficulties.  The only stressful moment was getting through security on the first leg.  I carried Mojo Jojo through, the stroller went through to some other area, the carseat to another, my cell phone and iPod and overpacked zip lock bags of babyfood and bottles went to yet another, and Miss B was still being held by her dad.  I felt a little panicky about how everything had suddenly dispersed.   I retrieved the stroller, put Mojo Jojo in it, found my iPod and other necessities, and started wheeling back to get B when the problem came up.  The TSA jerk wouldn't let T carry B through because he wasn't ticketed, but she wouldn't let me wheel the stroller up close enough that I could stay with MoJo while also going to get B, and she was adamant that if I went back to get B, I would have to go through the whole process again, which would mean leaving MoJo out of my reach.  As we were trying to work this out, with T and B on one side of the scanner and me on the other, T just set B on the floor and she walked right on through.  It was a triumphant moment, in its own little way.  Here I'd been freaking out about how I could get both babies across this great electromagnetic divide when one of them proudly reminded me that she is not such a baby anymore and can just walk through, like everybody else, thank you very much.  On the way back I just made sure that all three of us went through security at the same time and it was no problem.  I found that the most comfortable way to manage getting through the airport was to bjorn Mojo and put B's carseat in her side of the stroller (it sort of fits lying on its side and I wrapped its strap around the stroller's handle to keep it securely in place).  The diaper bags (I needed two because I packed tons of extra diapers and food just in case we got stuck someplace) fit in the bottom of the stroller.  When I got to the gate, I smiled sweetly and let them know that I would probably need a little extra help, and the crew was terrific.  On the way back, B refused to nap and yelled and cried a little, which was surely not ideal for the other passengers, but I didn't let it phase me.  I entertained her by letting her listen to her playlist on my iPod, which was hard to do because the earphones are too big for her little ears and so she had to learn hold them more or less near her ears.  We also did about 50 renditions of the Five Little Monkeys and several rounds of Wheels on the Bus.

Coming soon:  B's latest update.  Preview:  It involves lots of walking!

Brave? Foolish?

Later this week I am taking a trip to go see my parents.  I'm bringing both daughters but no husband, and I am terrified.  Did I mention that I'll be flying with two very young children, neither of whom can walk very well, by myself?  With no help?  At a low point in the history of airline kindness?  That somehow I'll have to bring two car seats along with everything else we need?  That I'll have to get through security at an enormous, crowded airport?  And manage feedings?  And diaper changes?  And a 3.5 hour flight?  How do people do this?  If I bring the enormous double stroller, will they gate check it for me, or will they balk at its bulk?  Can I even fit the enormous double stroller and our suitcases in the car at the same time?   I could bring a single stroller and keep Mojo Jojo in the front carrier.  That would be hard on my back and would mean not having use of the double during our trip.  Miss B has her own seat on the plane, so should I bring her carseat on the plane to put in it?  If so, how will I carry it through the airport?  The logistics of this are overwhelming.  If you happen to be in one of the nation's major airports this week and see a harried woman pushing a toddler in a stroller while wearing an infant on the front and an huge backpack on the back, to which she has somehow strapped an enormous toddler-sized car seat, be kind.

I hereby solicit your advice.  Please! 

Tusk!

Because The Wheels on the Bus is wearing a bit thin, I've decided to make my own mixed cd of music that I think Miss B and I would both enjoy.  Here's what I've got so far:

The 59th Street Bridge Song (Feelin' Groovy),  Simon & Garfunkel           

At the Zoo,  Simon & Garfunkel

Cecilia,  Simon & Garfunkel         

When I'm Sixty-Four,  The Beatles           

Seven Bridges Road,  Dolly Parton           

Got My Mind Set On You,  George Harrison

Black Horse and the Cherry Tree (Radio Version),  KT Tunstall

Suddenly I See,  KT Tunstall        

Wagon Wheel,  The Old Crow Medicine Show   

Will The Circle Be Unbroken,  The Seldom Scene              

Tusk,  Fleetwood Mac                                   

Second Hand News,  Fleetwood Mac     

If you know the song Tusk, you're probably thinking that it's a weird choice, and it is.  But last summer when I visited my 'rents, we ended up watching some concert footage of Fleetwood Mac performing Tusk, and Miss B went CRAZY, rocking out like I've not seen before or since.   Here are the lyrics:

Why dont you ask him if he's going to stay?
Why dont you ask him if he's going away?
Why dont you tell me what's going on?
Why dont you tell me who's on the phone?
Why dont you ask him what's going on?
Why dont you ask him who's the latest on his throne?

Dont say that you love me!
Just tell me that you want me!

Tusk! tusk! tusk! tusk!
Tusk! tusk! tusk! tusk!
Tusk! tusk! tusk! tusk!
Tusk! tusk! tusk! tusk!
Tusk!

That last verse is my favorite.  The song just goes on for hours repeating this laughably simple musical phrase, punctuated by shouts of "Tusk!"  Musical genius, no?  B thinks so.

Please leave comments with additional suggestions for my cd, or with your own reflections on Tusk!