Yo soy La Lay

adventures in family, faith, and Down syndrome

Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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Lesson #18: Little babies can do Speech therapy!

This is part of the 31 for 21 Blog Challenge!

So, first of all, this happened:

photo 1 (6)Ellie was enthralled with her potty costume… Once her cousin Jimmy came over dressed as Curious George, it was over.  Somehow, Ellie convinced him to shed his costume so that she could wear it and then the two of them had a grand ol’ time pretending to use the potty.  Kids are weird.

A rough transition here…. on to Speech.

It was very perplexing to me that we could start Speech therapy on a 6-week-old baby.  However, with Tessa unable to take her bottle in an upright position, we were set up with a type of Speech therapist who specializes in Oral-Motor therapy.  Oral-Motor therapy teaches a child awareness, coordination, and strength of the muscles of the mouth (all related to that low muscle tone that we keep talking about).

(On a side note, because I know some are curious, no, my children have not really been nursed.  Ellie got 5 days and Tessa got 12.  That’s a whole other story.)

During a therapy session, we work a lot on building strength in her core muscles.  When you think about eating, you use muscles throughout your abdomen, neck, and head to eat effectively.  One of the ways that we can improve Tessa’s eating skills is to build strength throughout her body so that she will be stable when she is sitting and can begin to use her hands to move food to her mouth.  This part of the session focuses on sitting and bringing toys to the mouth.

We also work on direct input to the mouth itself.  We started by providing input with a tool like this:

We use it to teach her tongue and gums what different textures and pressures feel like.  We also work on stimulating her tongue to move around the mouth to react to food.  Lately, we have graduated to putting small crumbs of graham cracker or animal cracker on the sides of her mouth so that she learns to move the food and to swallow it.

We always end our session with feeding.  Well, I shouldn’t say always.  Sometimes, Tessa gets really mad when she doesn’t get fed first.  And sometimes, she decides that she has had enough and just closes her eyes and goes to sleep.  However, we like to do some “spoon work” with the therapist when Tessa will let us.  🙂  We have found that a forward-facing presentation of the spoon (how you or I would put a spoon in our mouth) is challenging for her, so we present the spoon sideways.  However, we also continue to work on the forward presentation.  We are teaching her to get the food off the spoon and swallow.  She also has a habit of sticking her tongue out while she eats, so we have to wait until she puts her tongue in the right place before allowing her to take a bite.  Remember that a tongue is made up of a lot of different muscles, so her low muscle tone affects her ability to keep it in the appropriate place and use it effectively.

Our next steps with Tessa are to introduce a straw cup (recommended over a sippy cup) and to slowly increase the variety of textures that she will tolerate. We have begun to work on the actual “speech” part of Speech therapy with practice mimicking noises,  We have introduced signs for more, all done, eat, and drink.

The most important thing to remember is that while we have made modifications for Tessa and we do have to make a conscious effort to teach her some skills that may come naturally to others, our life is not work.  We don’t live in a constant therapy session, always practicing, practicing, practicing.  When we can, we do these things.  That is all.  There are weeks when we do a lot of practice.  Sometimes, we don’t.  Eventually, we’ll get there.

An excellent resource that I have just started to dive into is Early Communication Skills for Children with Down Syndrome.  Click on the blue link to find it on Amazon.

Blurry, but perfect…

photo (15)

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Special Needs Mom Law #2

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means.  So much of Tessa’s care seems similar to Ellie’s.  Slower, perhaps, but the same.  

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain…  maintain what?  I don’t know.  But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares.  I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.”  Thanks to Beth, our NICU social worker for that one.  No mom jeans allowed.  No laundry on a Friday Night unless we’re going on vacation the next day.  My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things!  I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily.  But I need her to feel important, special, and loved just as much as her sister.  And so I present to you Ellie’s milestone of the week:

Image

 

That’s her name!!  She can write her name!!  We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper.  My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself.  So we pulled out her little whiteboard this morning and she showed me.  I’m so proud.  🙂

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Priorities

Do you know what I’m really afraid of?

Mom jeans.

High waisted to hold in the leftover baby pooch, slim around the ankles with white tennis shoes. Or, Heaven forbid, the “capri” variety with socks and a pair of New Balance….

No. Not a good look. For anyone.

I know, I know, I’ve probably offended someone out there who loves their mom jeans. Or maybe someone doesn’t care about how they look and thinks I’m silly for even going there.

It’s not about the jeans, though. Not exactly. It’s more about me. Not my body (thank you, Weight Watchers app for checking in again today after my week from Hell. No, I’m still not going to weigh myself), not my fashion, just me.

The back story is this: Long before we even thought about Tessa, I began planning a student trip to Costa Rica with some colleagues. When we set our June, 2014 travel date, John and I were planning to have our second child about a year before the trip.

We all know how much God loves our plans.

Instead of our April 2013 baby, we got Tessa in late December. And cautiously, John agreed that she would be old enough in June for him to take care of both girls on his own for nine full days.

Flash forward to now, about a month before departure, and I had to back out of the trip. Aside from the financial aspect, there was a strong feeling that until Tessa is just a little healthier, stronger, more self sufficient, I need to be available… at least in the same country.

I am totally at peace with this decision. Of course, who doesn’t want to go gallivanting around a beautiful, exotic cloud forest, even if it is with a bunch of 17-year-olds?? Sad, yes, but I know this is best for us and what we can afford financially and emotionally. But it has me thinking about the “mom jeans.”

Because what if this snowballs? “No trip” turns into putting off a manicure or not getting Happy Hour wine with a friend so that I can be home with the kids… Then I stop putting on make-up every day and hair styling becomes a distant memory and then all the sudden I’m sitting on the couch in my mom jeans and old Kelly Clarkson t-shirt watching Shark Tank on a Friday night and I’m planning my weekend of chores instead of going on a date with my husband or taking a bubble bath.

It’s not the mom jeans. It’s the idea of life in mom jeans. It’s the idea of not taking a hour in the evening to read a book or catch up on Sister Wives… Or not finding a way to prioritize my own exercise routine…. Or not having enough energy to make sure that I haven’t created some awful outfit combination of stripes and polka dots while getting ready for work. That is my fear. Of not “putting on my oxygen mask first” like our NICU social worker used to always tell us.

John says the transition from zero kids to one was way more difficult than one to two. I beg to differ.

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