Trisomymommy

A Letter

In other news, I am still pregnant.  That fun second trimester libido has long since been trumped by heartburn, backaches, and awkward bulkiness, but all told I don’t feel too bad.  My follow-up ultrasound showed no problems, so we are released from worrying about anything in particular and can go back to the general, diffuse worrying at which I excel.  Actually, I’m keeping it together fairly well right now.  Who knew that getting kicked in the gut would be such a constant source of reassurance? 

In still other news, did anyone catch this article in the NY Times Science section? 

There are many issues here that one could complain about, but in my letter to the editor I decided to focus on their failure to mention any positive reasons for refusing amniocentesis.  In the process, I essentially accused them of racism.  Now I kind of regret this move because race is tangential to the main point and I might be rightfully accused of crying racism for the sake of controversy.  But it’s done, sent off in the heat of the moment. I doubt they will print my letter, so I’ll just give it to you here.

Jan Hoffman’s article on genetic counseling in poor, minority populations describes an expecting Mexican couple who decline amniocentesis after receiving a positive screening test for Down syndrome.  Hoffman wonders if they understood the information; if they were scared of the needle; if they were scared by the possibility that the amnio would cause a miscarriage; or if they did “just not want their dreams of a healthy baby punctured months before the due date.”  Hoffman fails to consider another possibility: that this couple fully understood the test and its risks, but also knew that they would treasure their baby even if that baby has Down syndrome, and so they refused the test.   Is it because they are Mexican that their choice is presumed to be driven only by ignorance, fear, or denial?  Or is it because, though the article is about balanced, non-directive counseling, the Times takes a dim view of anyone who declines invasive prenatal testing?

Update: 19 months

As B grows into toddlerhood, her personality shines through more and more.  This is good, as we like her personality.  Mostly. 

Several weeks ago I was struggling with the decision of whether to move her up to the “toddler” room at her day care or whether to keep her back with the infants.  I understand all of the arguments for keeping her with kids her age, but in this case, we decided it made sense to keep her back, at least until she starts walking.  In the infant room there are far fewer kids and so more individual attention can be paid to each kid.  I imagined that if B were in with kids who are her developmental rather than chronological peers, we might not need to worry as much about the kids running over her and grabbing her glasses.  I was afraid that the chaos in the toddler room might inhibit her walking because she would get knocked down so much.  Let the bullies move on up and I’ll keep my sweet pea where she’s safe and comfortable.

Now B is with kids at her developmental level and younger, and suddenly we’ve discovered that she is the bully.  She steals pacifiers out of the mouths of babies, making them cry.  As soon as she gets one, she takes off crawling as fast as she can across the room, indicating that she knows she’s in trouble, or at least that she knows someone is about to take her prize away from her.  The other day, I guess there was no pacifier to be had, so she just reached out and grabbed some kid’s face.  This can be quite painful for the victim, which I know because she almost pulled my nose off once.  I can tell her “No!” and pry her hand free, but the babies have no recourse.

I am really disturbed by the face grabbing.  Not so much by the behavior itself – it’s not malicious and I’m sure it will pass soon enough -- no, what disturbs me is how other people may see it.  All kids exhibit undesirable behaviors at some point, and I’m sure it always makes the conscientious parent squirm, but I think it is worse when that kid has special needs.  Will the other parents attribute her behavior to DS and thus conclude that they should keep their kids away from those with DS? Will the care givers not try hard enough to correct her because they don’t give her enough credit for being able to learn?  We all want our kids to be well-behaved and well-liked, but when your kid has a visible disability, the pressure is on.  For most of the people who meet Miss B, she is the only kid they know who has Down syndrome.  She represents the whole category for them.  It’s not fair, but it’s true.  Today she didn’t grab anyone’s face, so maybe it was just a fluke.

This afternoon, our service coordinator tagged along to our visit with the speech therapist to check in on how we’re doing on the set of goals that we set about six months ago.  I never pay attention to the goals in the paperwork; I just focus on whatever we’re working on in therapy at the time.  The S.C. asked about several skills involving language, and B had mastered none of them.  No, she does not say “Mama” and “Dada” meaningfully. Apparently, six months ago we thought this was a reasonable thing to expect by now.  After they left, I was feeding B her yogurt and suddenly I started crying. 

It’s still hard sometimes.

This is hardly my most uplifting post.  That said, there have been some positive developments here.  Although she’s not talking, I think her vocalizations are getting more complex.  She is sort of signing “ball” and is now signing “eat” appropriately and without prompting.  Her cruising continues to improve and she has figured out how to turn corners on the coffee table. 

I’ve seen some social developments as well.  We now have a little routine that we do that makes me very happy.  Once I finish changing her, I pull her up so that she’s standing (with support) on the changing table.  Then I say, “Come to Mama!” and she thrusts forward and throws her arms tightly around my neck and laughs.  She may not talk, but damn can this girl hug.  And despite her thieving ways with a pacifier, I do believe that she has some empathy.  We went over to play with (baby sit) my neighbor’s two-year-old recently.  As bedtime approached, the two-year-old started to get tired and then she suddenly started crying rather loudly and inconsolably.  I watched as the corners of B’s mouth turned way down and then her eyebrows furrowed and then she too started sobbing.  Usually when she cries it’s because she bonked her head or something – this was the first time I’d seen her do it in response to a social trigger. And I got my first taste of what it’s like to try to soothe two crying babies at the same time, and it wasn’t pretty. 

Now what?

On Sunday I finished my "little arts and crafts project," as it has come to be known.  The supplies cost over $100 and consisted of four three-inch thick D-ring binders, each with its own table of contents and a professional looking cover and spine.  Within the binders were 30 tab dividers, about 100 subdividers, and documentation of everything I've accomplished in my career.  If they think it was enough, I get to keep the job.  If not, I get fired.  There is no in-between. 

I think it was enough, but I'll find out for sure in about four months.

My last six years have been devoted to two things: trying to have a family and trying to fill these binders.  At times the stress has been unbearable.  Before this rough period, there was the earlier rough period of trying to get through grad school with an evil difficult thesis advisor.  In my adult life, I've accomplished a few impressive things, which is nice, but I also have lived with nearly constant anxiety and fear of failure.  And so here I am.  I'm done with all the big goals I had set for myself.  I've got my family.  I've got my job (hopefully).  I suppose I should feel relaxed and relieved, but I just feel out of sorts.

Now what?