Trisomymommy

Speech

From the way parents talk about their kid's first words, I had always assumed the matter was clear cut.  One day, your kid says "Bye bye" or "Mama," so you cheer, call grandma, and make a note in the baby book.  With Miss B, it has been such a slow, gradual progression toward speech that I don't really have an exact celebratory moment to point to.  The moo was nice, but can we count an animal sound as her first word?  Before that she had been saying an "m" sound sometimes while signing "more" or saying a "d" sound while knocking down blocks, but do those count?  I don't require that she get each and every phoneme, but I think reasonable criteria would be that she should use a sound consistently in its appropriate context and it shouldn't be something she just says all the time anyway.  She says "m" and "d" all the time anyway.  But over the past week her "d" has turned into "dow," and she's been saying it when throwing things out of her crib.   And a few weeks ago she learned to sign "all done," occasionally pairing it with something that sounds like "d" or "ah-d."  Then today during breakfast she was signing "all done," but I didn't think she had eaten enough so I tried to give her more food anyway, and then, like an exasperated teenager, she yelled at me!  She yelled, "Awwwduh!"   Her meaning was clear.

Moo

Okay, so I admit that maybe I was overreacting about the sleep problems.  For the past two nights, she has slept perfectly.  Call me the mommy-blogger who cried wolf.  Of course I keep waking up and listening for her anyway, so I'm still not sleeping well.

Yesterday we had a development so monumental, so astronomically important, that it cannot wait for the next monthly update.  B and I were reading our favorite book, which is Noisy Farm.  I love this book because it is so simple and to the point.  While many baby books show pictures of complicated scenes with way too many objects, this one just shows close up photographs of farm animals, one per page, each cut out and pasted onto a plain background.  The spare, concise prose simply asks what sound each animal makes.  I enjoy trying to do a good imitation of the animal sounds and I admit that I may take a little too much pride in the accuracy of my "Moo."  But enough about me and my moo.  As we were reading the book, we got to the cow (our favorite page), and I read aloud the usual question, "What does the brown cow say?"  Miss B responded, "Mmmmmmmmmmmmuh."  It was not a fluke.  She kept turning back to that page and she would say it everytime.  She did it even when I hadn't just made the same sound, so this is not immediate imitation but rather it is learning that this sound corresponds to this picture.  After we were done with the book, she later picked it up again and said, "Mmmmmmmmmmmmuh."  (Our book has the cow picture on the cover, so it makes sense that she would make this sound while just looking at the outside of the book.)  T was watching the whole thing and agreed that it was not random babbling but rather our first clear evidence of a purposeful, verbal response. 

In her 19-month update I wrote about how I cried after acknowledging to our service coordinator that B does not say "Mama" or "Dada" discriminantly.  Jennifer commented that she thought my post was "about how every now and then, unexpectedly, grief sneaks in."  That is exactly right.  Even now, after 20 months, it just grabs me by the heart sometimes without any notice at all.  I feel like this has been happening a little more often lately and I'm not sure why.  Partly it's the pregnancy, which makes me emotional and leaves me feeling so drained most evenings that I don't seem to be very good at keeping those emotions in check.  I think the pregnancy also brings with it many reminders of my pregnancy with B, of her birth, and of the news that followed.  Anyway, grief snuck in on me yesterday too.  I was talking with our OT about how B seems to have all of the necessary motor skills to be able to stack blocks, but she has no interest in doing it.  The OT (whom I like) wasn't too concerned and said that some kids just don't like blocks.  She mentioned in passing that it can be a problem later because when they do IQ testing, the non-verbal components rely heavily on seeing if the kid can copy a pattern or structure that the tester made out of blocks, and so it's hard to do accurate testing on kids who don't "do" blocks.  Later that night, I kept having this mental image of B being tested.  I had never considered this before, but of course they will want to do it for placement purposes.  I pictured some tester trying to get B to copy a block pattern and B not being able to do it, and I imagined the tester making some cold assessment based on her performance.  I imagined my gorgeous, happy, curious B being reduced to this score, and just the thought of it sent me sobbing.  I wasn't crying over the expected outcome of the tests -- I accept that her scores will be low -- but instead at the thought of the testing itself, of her being viewed through that lens.  I can't quite articulate why this hurt so much, but it did.  I cried hard and T was understanding, and then when I finally got over my outburst, we spent some time talking about all of the things she has learned and how much joy we feel at her accomplishments and how delightful she is. And how she knows what the brown cow says, and she can tell us that she knows it.  My baby can moo.

It's all I need right now.

 

Update: 20 Months

B continues to cruise along. She will stand on her own for almost a second sometimes before either grabbing nearby furniture or plopping down. She can now climb up a little staircase to the top of the slide at our nearby playground and then go down it head first, all by herself. 

She has learned to sign “All done.” Whenever you ask her if she is “all done” she will wave her hands in the air to confirm it. I don’t know if she fully grasps its meaning because sometimes she will sign “all done” when she is clearly not “all done,” and then she’ll immediately start asking for “more”. It can be hard to distinguish her sign for “all done” from her “bye bye” wave. I guess they are conceptually pretty similar. “Bye Bye, I’m all done with you.”

We have a new problem.  For the past week, she has not been sleeping through the night. This, after 20 months of truly excellent sleeping. I think there are a variety of factors at play. We moved her to a different crib in a different room. I really didn’t think this would bother her much, but maybe I was wrong. Then she got sick and woke up coughing and crying a few times, so of course we held her and comforted her until she went back to sleep. From that, she seems to have learned that she can cry and yell and someone will come and hold her. It tends to work, and now she demands it. This also fits with a daytime trend of her becoming much more clingy with me. She cries briefly when I leave the room. I’d be lying if I said there was nothing gratifying about this, but still, I don’t want her to be distressed.

The behaviorist in me believes that if we just let her cry it out, she will get back on schedule fairly soon and learn to soothe herself to sleep. During the day, I resolve that this is what we will do. But at 3am, when she’s wailing and somewhere in the midst of the yelling I think I might hear something that sounds vaguely like “maaaaa maaaaa,” it is impossible for me to ignore her. Unfortunately, T and I may have done the worst possible job of handling this. We haven’t gone to her immediately and we haven’t forced her to cry it out. Instead, we have let her cry and cry and cry until we can’t take it anymore and then we have reinforced the behavior by caving and going in to get her. There is probably no better way to teach her that if she can just keep it up long enough, she’ll win this battle of wills. I guess there is something to be said for encouraging persistence, but I'd like her to persist in behaviors that are more useful, or at least more endearing. 

I'm disappointed with speech therapy.  We have both an infant educator and a speech therapist and, as far as I can tell, they are doing much of the same thing, except that the infant educator is more fun, more experienced, and less expensive.  The speech therapist has more advanced education, but less wisdom, so, bye bye speech therapist, all done.  B still doesn't have any real words, but I think she's getting closer.  Sometimes when she's signing more, she'll say, "Muh".  Sometimes when knocking blocks down (she does not stack them), she'll say "Duh".

There are some things that we work on over and over but B just doesn't seem to get, and then there are times when she surprises me with what she has picked up through mere observation.  Recently she grabbed T's cell phone off of the table and held it up to her ear.  Hand her a comb and she'll try to run it through her hair.  The first time she got ahold of my purse, she slung it over her shoulder as if she'd been doing that all of her life and tried to crawl off with it.  Thievery was never so cute.

 

O Captain! My captain!

The B is feeling better as a result of the current round of antibiotics, although she’s still not 100%.  We’re doing some additional testing for immune problems and allergies.  We also have an appointment soon with her ENT and are hoping that he might have some suggestions.  We might just look into hiring a nanny to get her out of group day care, which is a complicated decision. 

This weekend we went to our first “Buddy Walk” ever.  I had looked into doing this last year but our local group didn’t have one, which was just as well.  T and I weren’t ready then.  We weren’t involved in any DS organizations or support groups and hadn’t met any other families yet.  In general, I’m not much of a joiner, and T is even less of one than I am.  He’s kind of the anti-joiner.  But gradually, I’ve become part of a community and have pulled T into it with me.  I have a group of other moms that I see regularly and some of them have turned out to be people that I’d like to be friends with even if we didn’t have this random chromosomal anomaly in common.  T and I go to some of the local group meetings and once he even went out for a beer with some of the dads. So this year, when the local group decided to throw a Buddy Walk, we were in.  We were a tiny team:  just T, T’s mom, me, and of course our captain, Miss B.  Exhibiting leadership skills that she must have inherited from me, our captain slept through most of the walk.  I managed to complete the walk (although for me it was more of a Buddy Waddle) and was feeling rather proud of myself until hours later when I had the worst back pain of this pregnancy. 

That night we all went to dinner at one of our favorite restaurants where everyone is always thrilled to see B.  It’s a bit sketchy to bring her to a restaurant these days – sometimes she’s fine, but sometimes she decides to yell loudly to entertain herself and everyone within earshot.  But she was delightful: all smiles, giggles, and cute babbly sounds as she happily wolfed down T’s sweet potato side dish and my French fries. 

Sometimes when we’re out like that and B is being exceptionally adorable, and she’s wearing her new brightly colored Peruvian sweater that’s extra cute for being too big, and she has her blond hair pinned to the side in a little barrette, and she is keeping her wire-rimmed glasses on without a fuss, and the waitress can’t stop winking at her, I find myself aware that other people are looking at us and noticing B’s Down syndrome.  I don’t know what they are thinking.  I hope they don’t pity us.  They are probably wondering what it’s like, which is the kind of thing I wonder when I see other families with something different about them.  As they watch us out of the corners of their eyes, quickly (but not quickly enough) looking away when I look up, I hope they see that it’s okay.  That it’s not tragic.  Of course they are probably thinking, “See, just as I thought.  They are always so sweet.”

B earned an official certificate for being our captain at "The First Annual Buddy Walk."  I almost tossed it out, but then T suggested that we save it because maybe someday it will be important to her.  Maybe she'll be proud to have been at the very first walk in our city and maybe she'll build a collection of these certificates over time.  I felt like an oaf for not thinking of this and it made me realize how rarely I imagine her being any older than she is right now. 

 

Superbug

B is sick.  Again.  Back in late July, we took her to the doctor because she had a persistent cough and goopy eyes.  The doc gave us a prescription for antibiotics as well as several other drugs that are supposed to control her congestion and wheeziness.  It all worked like a charm and she cleared up fairly quickly.  We completed the 10-day course of antibiotics and within a few days after that, she woke up with goopy, sticky eyes again.  This was soon followed by the same old congestion and wet cough.  So back to the doctor, and back to another 10 days of antibiotics.  This cycle has been repeating ever since.  About a week ago we finished our 4th or 5th round of these drugs (I've lost track), and sure enough, she now has goopy eyes, a runny nose, fluid coming out of one ear (at least that tube is doing its job, I wonder what's up with the other one), and a fever.  Last time I brought her in, the doc told me that she thought that, because B was symptom free by the end of the drug regimen, the antibiotics were effectively kicking whatever she had.  She thought that B was just picking up new bugs constantly and wasn't very good at fighting them off on her own, and that's why she keeps getting sick.   I'm concerned that we're breeding the next drug-resistant superbug right here in our own home, but the doctor reassured me that as long as we're using the antibiotics to fight off new infections rather than just repeatedly treating the same one without curing it, I shouldn't worry.  I did feel reassured after that, but the more I think about it, the less I believe her.  B was in daycare all of last year and was exposed to every illness imaginable.  She did get sick a lot, but not with the cyclical predictability that we've had for the past 10 weeks or so, and not always with the same symptoms. 

I am so frustrated. 

Before having kids, I had no idea that my kid's sicknesses would be so emotionally charged for me.  It hurts to see her grumpy and uncomfortable and to hear her coughing at night.  And while I don't usually feel that working mom guilt that working moms are expected to feel, at times like this I am quick to think of how much healthier she might be if she weren't in daycare, which somehow in my head translates into her sickness being my fault.  (Aside: I never think to blame her working dad, nor does he ever feel any guilt about working, which just goes to show that even when you don't live by the traditional gender roles, they are deeply entrenched.  But that’s a post for another day.)

Keeping on

I've already dropped the ball on the blog challenge by not posting yesterday.  So yeah, I suck.  I don't have enough thoughts to produce a blog entry every day, but I'll continue to try to use this blog-o-rama to at least post more often than I have been lately. 

I've had a good week.  This is partly because I'm thinking of it relative to the week before, which sucked.  If you can avoid it, I'd recommend that you don't suddenly become violently ill during the dessert phase of a dinner party at your husband's colleague's house.  Since you don’t know these people and have never been to their house before, it is rather mortifying to end up retching loudly in their bathroom.  It also seems rudely wasteful after they’ve served you a very good dinner.  Stomach flu and pregnancy are not a good mix and should be staggered so as not to coincide.

But I got over that fiasco, and then on Monday the colleagues in my immediate department had their big meeting in which they decided whether to fire me or employ me for life.  I'm very fortunate that my two most wacky and unpredictable colleagues both retired recently and so they had no say in the matter.  I was left to be judged by the reasonably sane ones.  I know where I stand with them and I expected that they would give me a positive vote, but it was still nerve wracking to know I was being scrutinized so closely.  I left the building for awhile just to get away from the discomfort and I happened to return just as they were getting out of their meeting, which was awkward.  One of them gave me a furtive thumbs-up as he passed and then I got the official word of their positive vote about two hours later.   Now they will all write letters about me which will get added to my file, which then goes up to the next bureaucratic level for another vote.  Those people then add their two cents, and send it up to the next level, and it just keeps going until it gets... I don't know... to God or someone.

My colleagues are not supposed to reveal much about their deliberations or the contents of my file, but we’re all friends and they can't help themselves.  From their indiscretion, some of which was fueled by wine consumption at a fancy annual reception that we attended, I have been able to glean that I am in better shape than I thought.  It’s going to be fine.  I’m not going to get fired. 

So no, I don’t suck. 

A book review

One of the first book's my B was given as a newborn was Pat the Bunny.  I knew it was a classic, but I'd never actually read it before we had B.  I wasn't even sure if the title was supposed to be imperative (You, kid, pat the bunny, or else!) or if it was announcing a story about an ambiguously gendered rabbit.  Unfortunately, it's the former.  I have read it to B a few times and I always end up mystified and vaguely creeped out.  I mean, it's nice and all that Judy can pat the bunny, but it hardly seems like a skill worth writing a whole book about.  What's really going on here?  And then there's the commanding tone: "Now YOU pat the bunny."  "Now YOU play peek-a-boo with Paul."  etc.  I tend to take the child's perspective and I find myself thinking, but Paul looks like a dork and he doesn't even have a properly drawn nose, so what if I don't want to play with him?"  And then there is the way that the book tries to break out of standard literary conventions by including a little cloth you can lift up to play peek-a-boo and a mirror you can look in and flowers that actually have a scent.  I wonder about the scent.  Was it concocted in some smell lab on the New Jersey turnpike?  Has it been consistent across all editions of Pat the Bunny?  Do adults ever come across a similar scent and have flashbacks of childhood?  Do perfumers try to work in notes from Pat the Bunny in order to evoke unconscious positive associations?  How would we know?  The weirdest part is Judy's Book within the book.  It's kind of like a Shakespearean play within a play, but rather less artfully done.  And at the end of the little book within the book, when the bunny is supposed to be sleeping, I swear he's really dead.  I'm sorry to be the one to break the news to you, but it seems obvious to me that he must have choked on that bunny-head-sized spoonful of his supposedly "good" supper.  The rather flat ending of Judy's Book is mirrored in the ending of Pat the Bunny, which has no graceful denouement whatsoever.  You're just going along, doing as you're commanded to do by some mysteriously authoritative narrator and suddenly it reads, "That's all." and you are told to say Bye-bye.

That's all. 

Bye-bye. 

Now YOU say Bye-Bye.

Or else…

 

 

Okay, I'm in

I'm always late.

I need inspiration to blog more often, so I've decided to join the blogapalooza that Tricia got started. 

And besides, I want the wellies!!!!