Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #28: I wish it wasn’t on the news (sort of).

This is part of the 31 for 21 Blog Challenge!  We’re almost to the end……

Frequently, news articles pop up on my Newsfeed on Facebook with headlines like Couple with Down Syndrome Chosen as Prom King and Queen or Man with Down Syndrome Opens Restaurant.  I love these celebrations of people’s accomplishments.  They are “feel good” stories.  They are inspirational, barrier breaking, door-opening.

They also make me sad.

Articles like the above represent a weird paradox for me.  I am uplifted by them because they are a reminder that there are no limits to what Tessa can do.  I’m annoyed by them because if society would just stop seeing her as less than, they wouldn’t have to be news stories in the first place.

Celebration and a heavy sigh in the same breath.

I want Tessa to be accepted by her peers and I don’t want someone on the Nightly News to think that acceptance merits a news story.

I want Tessa to do whatever she is capable of and I don’t want anyone to be surprised when she does.

I realize that we are not there yet and so the new stories are necessary.  I’m thankful that the message being spread is that people with Down syndrome can (whatever).  I know that when we first got the diagnosis, there was a tremendous amount of comfort for my husband in watching a YouTube video of a boy with Down syndrome receiving a college acceptance letter.  He probably watched it 400 times during the first week After.  I just hope that someday, this becomes so commonplace that we can celebrate in the same way we would for our typical daughter – with a dinner out at Chili’s and an extra scoop of ice cream for dessert.

Someday.

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And now, a little group selfie (are these called “groupies” yet?) fun…

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The longest yard

Ok, so not a yard… more like six inches… but still.  I’m not going to take two minutes of your time to talk your ear off today.  Instead, I’m going to share two minutes of Tessa that literally has me floating right now.

If you’ve been following Tessa for quite some time… or if you read my post about my defective child, what happens at 1:47 might just get you, too.  I watched the video about 4 times before I saw it…

To set this up, we’ve been struggling a bit to find things that motivate Tessa to move.  Today, I set up my iPhone camera to record her looking at herself.  This is what we got:

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Giggles

Okay, okay, okay.  For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

photo (11)Why she wouldn’t smile, I’m not quite sure.  I just decided to join in with her.  And the cat face?  We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done.  They do it when they are ready, ya’ll.

Also, this kid laughs:

IMG_6178I cannot even begin to tell you what joy filled us to hear her laugh for the first time.  It caught us totally off-guard and it was AHmazing.  I have replayed the moment in my head a thousand times, hoping that the sound and the feeling never leaves my memory.  In the following video, you can kind of hear it.  Unfortunately, pretty much the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John.  It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too.  She can’t really pull her belly up off the floor, but she is engaging her hands a lot more.  We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time.  She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew).  She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.”  As her core gets stronger, she will be able to laugh more and make louder sounds.  She spends a lot of time folded in half, chewing on her toes, like lots of kids do.  She is infamous for getting stuck underneath the furniture.  We think teeth may be coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth.  Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

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5 months

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

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The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

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Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

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(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

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and this…

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and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

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Welcome back summer, we’ve missed you.

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