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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We interrupt this regularly scheduled program…

 
😀 😀 😀

That is all. 

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Milestone madness

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

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Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

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11 months

We have somehow arrived at month 11 and I’m feeling more than a little thankful to be past all of the “monthly updates.”

I’ll be honest with you – along with those ridiculous stick-figure families on the back window of 80% of family vehicles, I loathe monthly baby Facebook updates. You know what I’m talking about? Little number tacked onto a onesie, baby sitting next to some board that lists all the stats… Loves peaches!! Great eater!! Hates going to sleep!! Started doing quantum physics!!

Ugh.

(If you do these with your child, please know that I love you both very dearly and this is no reason for you to stop. Please don’t be offended if I don’t read them though. It’s not you, it’s me.)

Really, I don’t think I’ve given you a monthly update in quite some time. I forget, most days, how old Tessa is. The number floats around in the back of my brain and if asked, I can retrieve it. With strangers, sometimes I lie and tell them that she is younger… usually, that’s just easier than having to explain that yes, I know she’s a tiny little peanut and no, she’s not walking yet. But even if the rest of the world is obsessed with how she measures up to her peers, my thoughts about her have so little to do with what she should be doing and so much to do with how far she has come. I don’t really think much about ‘man, you should be standing!’ There are mostly thoughts about how therapy is helping and how much I want to do what is the very best for this girl.

Eleven wild months. Amazing.

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Lesson #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

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Lesson #26: It still goes so fast

Someone told me that I would get a “prolonged” infant phase with Tessa.  I was assured that I would have more time to enjoy each stage because it would take longer for her to grow up.  And I’m sitting here today wondering who that person was, because they lied to me and I want to find them and tell them.

One hour old baby Tessa

IMG_3908Don’t get me wrong.  We are very, very much still in the infant phase.  Tessa is nothing like a typical ten-month-old baby.  I’m enjoying all the moments, but it still doesn’t feel like time has slowed.

One month old baby Tessa

IMG_4347You see, this weekend, a little tiny tooth popped through Tessa’s bottom gum.  And it kind of has me in a tizzy.  Because I really like her gummy grins  A lot.

Four month old baby Tessa

IMG_5028Five month old baby TessaIMG_5426It took us a little while to get them… and now I love each and every one.  And I know that it will still take a long time before we have a full on, toothy grin.  I just want a few more of these to savor for now…

Seven month old baby Tessa

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Time is flying….

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Lesson #5: There is no “should”

This is part of the 31 for 21 blog challenge!

As 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 needs ask those questions.  Impatience is just part of the game sometimes.  When a baby is born with Down syndrome, the milestone charts get thrown out the window.  We all know our kids will get where they are going; it’s just a matter of when.  Waiting for when can be frustrating.  The feeling that she should be able to do something nags a little at the back of my brain.  From time to time, I freak out that I’m not working with her enough.  And yet….

In the ebb and flow of my feelings about Down syndrome, I often find it immensely liberating that Tessa works at her own pace to meet her milestones.  Milestone charts exist for a reason (above and beyond the ability for moms to compare their children 😉 ).  They don’t really apply to Tessa because she has a diagnosed disability and we have known, since birth, that she’s on her own schedule.  She has no should.  However, the knowledge of when things should happen is actually vital to the typical child.  When typical babies are born, milestone charts assist parents and doctors in determining if a child needs extra support or may have special needs.  Unlike with Down syndrome, you cannot see a learning disability, autism, or a sensory disorder by looking at a child.  Milestone charts, or knowledge of typical behaviors and development, help diagnose and support parents.  They ensure that the child can receive interventions at the earliest possible time.  We already have our diagnosis, and while a diagnosis certainly doesn’t make life any easier, the blessing of knowing what the diagnosis is is not lost on me.

For both Ellie and Tessa, at the beginning of each Well-Baby check-up, the nurse asks a series of questions about their development.  When I have to answer about Ellie, I feel pressure.  If she cannot do something, I go home and google when she should have mastered it.  When they ask about Tessa, I just laugh.  Many times, I get to say “yes, she can.”  Sometimes, it’s a “not yet” or “we’re working on it.”  But there’s no pressure.  I have no need to compare what she can do to anyone else,  because there is no should.  And that is empowering.

This post was inspired by some moms in my Rockin’ Moms group on Facebook, organized by the Down Syndrome Diagnosis Network.  Thanks, ladies, for asking great questions and being so supportive.  🙂

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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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Reacting Appropriately

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic.  From me to Ellie and now Tessa… we love it.  As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping.  However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant.  There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera.  It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping.  But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body.  She did it!!  The practice is working!  Miss Kate and Miss Rachel (OT and PT) will be so proud!  I’m so proud!!

Every milestone is a rockin’ celebration.  I don’t even get pictures of this stuff because I’m too excited to consider a camera.  Yesterday, Tessa found herself in the mirror during her bath.  I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others.  Everything that other kids just kind of figure out takes her so much more.  And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay?  It is.  It just is.

And now, cuteness:

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