Yo soy La Lay

adventures in family, faith, and Down syndrome

Presenting: My Defective Child

on September 14, 2014

I did something really dumb.

Well, not really that dumb, I guess.  That’s kind of melodramatic.  But still.

Last week, I was invited to talk to our Child Development classes about Tessa and her Down syndrome.  They were starting a unit on birth defects (which isn’t how I, personally, would categorize her extra chromosome, but whatever) and the teacher thought I could provide an interesting perspective.

I was totally thrilled to do it.  I feel really excited to share my girls with people.  I think it helps to make Down syndrome less odd for those who don’t have contact with it.  Anything we can do to stop making Ds so stigmatized, I’m on board.  And then I got kind of gung-ho about the whole thing and made a PowerPoint with pictures and diagrams.  At the last minute, I decided that I would include a video of Ellie at nine months and Tessa now (almost nine months) to show the difference. That’s kind of where I got myself in trouble.

We are making SO MUCH progress with little Miss Tessa!  Listen to her talk:

Forgive the awkward camera angles, please.  She won’t talk if she knows the camera is on her.

And here, she’s getting a little early-morning ab workout:

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She’s so close to sitting and she’s pulling up into a crawling-like position and she’s eating like a champ.  I didn’t need the video reminder of her delays, but there is was.  Ellie, so so so cute at nine months, clapping, sitting, babbling.  I got a little teary.  (For the record, I’m really not a crier.)  I’m not sure if it was seeing my threenager so cute and cuddly and small or seeing the progress that Tessa still has to make, but I can tell you that those videos did not make it into the PowerPoint.

Someday, I’ll be really ready to love and embrace watching all my old videos of Ellie.  I’m just delayed in that area right now.

The presentation, as a whole, was actually pretty good and very well received.  I let them ask me questions about Tessa and got some good ones.  The vast majority of them were very concerned about how she will wear glasses if she needs them (since she has no nasal bridge) and wondered if she could wear contacts.  They asked how it felt to get the diagnosis (that’s complex), wondered if I wanted more kids (yes), asked if she could do things like drive and live on her own (probably), and were very respectful.  One girl asked about why we didn’t do any prenatal tests (that was an awkward thing to explain…carefully… in a public school).

I’m so glad that I went to talk to these kids!  I had the opportunity to tell them about how she is actually much more alike than different and that is what really matters.  One student asked me how my day-to-day is different with Tessa than it was with Ellie.  And I was happy to report that, besides the therapy, it isn’t.

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7 responses to “Presenting: My Defective Child

  1. Oh man I just want to swoop in and give that girl a huge cuddle, she is just the cutest.
    I can totally understand feeling sad about the difference in milestones. We can’t help our inherent expectations. You have done such an inspiring job of being Tessa’s mom and embracing her for who she is. Having been told by you just last week to not be so hard on myself, I’ll tell you the same. You’re a great Mom to both those girls.

  2. Mary Wolodkiewicz says:

    I just love reading about both of your girls!

  3. […] Presenting: My Defective Child Sep […]

  4. Joanne says:

    Peanut doesn’t sit up on her own. It never occurred to me what she “should” be doing at this age, seven and a half months…I’m just really happy she’s developing at all…I suppose it’s harder, being the mum of more than one kids – one with designer genes, and one without. You can’t help but compare. I have but only my Peanut, and so whenever anything is new, I’m totally thrilled. Tess is adorable, and I find myself looking at her and hoping that Peanut will one day get to the stages Tess is at. 🙂 A little perspective, I guess.

  5. […] is well documented on this blog (for example, here, here, and here), I often struggle with when Tessa will learn new skills.  Lots of moms whose kiddos have special […]

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