How to Know?

Parents of young children with Ds these days are likely to hear just how much better the opportunities, expectations, and quality of life are for their children, as opposed to even 10 or 20 years ago.

This is attributed to better medical care, Early Intervention services, and largely, in my view, to inclusion.

Being counted in as a member of society is critical.  Being a student in a classroom with other typically-developing peers, participating in community events, being seen and heard... all these factors help to raise expectations for our children.  And our children are rising to meet many of these expectations all the time.

But like other parents, I often find myself wondering just how much to push and just how much to expect.  There is such a push to prepare for school, to make sure our children are in age-appropriate typical classroom settings.

I am starting to look at preschools.  I know she won't start for another year, but it suddenly feels like it'll be here before we know it.  Her Early Intervention team feels that she won't benefit much from the school district's special education preschool and that we should start looking for a typical preschool classroom for her.  The daunting prospect of putting her in school is already giving me butterflies in my stomach.

And the whole thing has gotten me thinking...

I'm looking at taking her back to the library story time events, since her naps are finally shifting enough to permit this.  And I wonder if I should take her to the 2-year old class or the 1 year-old class.  She just turned 2.  She's small.  She doesn't really talk.  She doesn't walk.  Heck, the last time we were in the 1-year old class (about a year ago), she was one of the very few non-walkers and the 1 year olds were doing some pretty impressive things (like following instructions and participating in activities.) Thinking of what the expectations for the big 2-year olds makes me nervous.  Would she be ready?

I guess the question I've been asking myself is whether I want to constantly push her beyond where she is developmentally and expect her to be with her same-age peers.

If we push her so much will there be room for her to be where she is?   

I want to value where she is now.  My perfect moments now are when I am on the floor with Cora, delighting in the things that she finds hilarious, watching her interact with her surroundings, seeing the sparkle in her eye as she discovers something new.  Sometimes I find myself losing sight of that beauty when I am too focused on her next steps.  I want to give us both time to enjoy where she is now, happy to move forward when she is ready.

If I am constantly looking to push her, does that mean that I am not accepting of where she is?  Does that mean that I don't think that where she is is good enough?  

Not long ago while playing with blocks she'd toss them around, maybe halfheartedly trying to stack one or two before knocking them over.  And I would wonder whether I should push her harder, knowing that one day soon she will be measured by her whether she can stack blocks.

But today I watched her meticulously try to stack her blocks for almost half an hour.  For the first time, she really tried.  She hasn't mastered the interlocking pieces quite yet, so she just tried balancing them on top of one another.  And then the little smartie tried some problem solving: she pushed them over to the couch so her tower could lean against it, allowing her to stack a little higher.  I looked on with such pride.  I felt such accomplishment for her, even though she hadn't quite mastered the skill.  And I realized that I really just needed to wait for her to be ready.

I don't know what it is that makes her ready.  Somehow turning 2 has been a bit of a turning point for her.  She is eating more, nursing less, self-feeding with utensils more easily, and suddenly willing to drink from a cup.  She finally seems interested in moving her body.  These steps that I have been worriedly waiting for her to take are now happening before my eyes.  I don't know why she is now ready for them, but she is.

So I will keep questioning myself I'm sure, hoping that I can make good choices.  I'll keep watching her, keep playing with her, and keep providing her opportunities to learn.  I will try to step back and let her try, even though I want to scoop her up and make everything easier.  I will continue to work on being patient, waiting for her to show me what makes her shine.

Cora and Kai's Birthday Bash Under the Sea

Cora and Kai's birthday weekend was brought to us by the signs "celebrate" and "rhinoceros."

"Celebrate" was obvious, since we celebrated the second birthdays that took place a couple of weeks ago.  And we celebrated the simple ability to reunite, since Erin and her family live all the way in Vermont.  It was a blast of sleep deprivation and way too much laughter.

"Rhino" may seem a bit less obvious, but it quickly became Cora's new obsession, as she couldn't pry herself away from the life-sized fiberglass rhino bust mounted on an exterior wall of my parents' house. Don't ask...  But it's actually really cool.

Instead of too many words, here is a photo blast from the past few days.

Not usually the type to get too into the decor... we broke our rules and created a little oasis under the sea.  The balloons and streamers were appreciated by the guests of honor.

We got a little silly with the food...

The most fun was putting together the fishy cupcakes the night before.  They didn't look quite as immaculate as the ones in the cupcake book... but made up for their lack of perfection in creativity.

Not surprisingly, Cora did not want to touch or eat her cupcake.  She did have a couple of icing-free M&Ms and some raw red bell pepper.

Kai gingerly took his fishy apart after 24 hours of eager anticipation.  He woke up Saturday morning yelling, "It's my Birthday party! Leah's cupcakes!  Downstairs!  Now!"  Anyone that knows Kai will know that these were the utterings of a crazed cupcake coveting boy and not his typical articulate and fully grammatical sentences.  Not like his earlier musings after being told that Cora is a toddler just like he is.  "Actually, Cora is a baby, not a toddler, Mira."

Cora the Bookworm was very excited for me to read her card to her.

The cousins actually played together, especially once Cora opened her new play kitchen.  This was quite the accomplishment, since Miss Cora is pretty shy and generally wary of small people that make fast movements and loud noises. You know, like toddlers.  

Cora and Auntie Mira signing "rhino."  What good signers!

Cora and her favorite Auntie Eri.

There are way too many photos and moments to share, but suffice it to say that it was a wonderful time.  Makes me wish Cora's birthdays rolled around more often.  Okay, not really.  Guess it's never too hard to come up with a reason for a good party, though.

When Low Tone Meets Low Motivation

 
I hear a lot from parents of kids with Down syndrome, telling the world how very hard their child works to reach milestones and accomplish things that come easily to the typical population.  How their child works tirelessly, pressing forward, eager to achieve, never giving up. 

And then I wonder:  why doesn't my child seem to have this pressing drive that so many other parents see?

In my reading on raising a child with Ds, I read that often children with Ds will find shortcuts and take "the easy way".  This isn't just due to laziness.  It's often because low muscle tone and hyper-mobile joints with loose connective tissue make it difficult to use muscles easily.  Muscles with low tone are not always ready to do work like typical muscles are, so extra signals need to be sent to make any movements.

So a movement that comes easily to a typical child may be very difficult for a child like Cora.  Case in point:  getting onto her hands and knees to crawl, bearing weight by standing, climbing up stairs, moving to a seated position.  A child with low tone actually needs to be stronger to do the same movements someone else will do, because greater strength is needed to stabilize loose joints and more work is required for even simple movements.

Reading more about low tone this weekend clarified to me why Cora does many of the things in the way that she does.  It helped me understand a little better what low tone means to her and why it is so hard for her to do certain things.

And it makes sense that if someone, even you or I, could adapt our movements to make certain things easier, we certainly would, wouldn't we?  

Well so does Cora.  And that's why she butt-scoots instead of crawls, and is just now learning to do things that very young babies often master well over a year before she was even willing to try.  The fact that she hasn't had much practice doing these things makes it that much harder for her to do them.  Her muscles haven't figured it out.  Her muscles haven't strengthened in the ways needed for her to do these movements.

But the difficulty alone doesn't exactly explain her lack of motivation.  I see pictures and stories of children Cora's age with Ds who are walking, taking steps and moving all over the place, low-tone and all.  Their parents constantly applaud their fierce determination.  

Cora just isn't doing that.  This is largely because it's just not her priority and it's not in her personality.  Children are often said to be either "motor driven" or "observers."  It is clear that Cora is an observer.  That she would rather read, and sing, play and communicate than try to walk or crawl. 

And, like her mother, she seems to not want to do things when they are too difficult.  I admit it.  When things don't come easily to me I am reluctant to expend the energy.  And it seems that Cora is following suit.  If there's an easier way to do something she'll likely find it.  Or she simply won't do it all until she's darn good and ready.

Happily, she has been making progress in gross motor recently.  On her birthday, she began to pull to stand regularly.  In the past she could do it, but seldom did.  Especially if anyone was looking.  But she seems to have figured out how to use her legs to get up, and is now pulling up all over the place.  Last week, cruising on the couch finally "clicked."  Although she could do it months ago, she just didn't.  But now she's learned that she can do it, and she's finally found the internal motivation. 

We still need to work on independent standing, bending her knees more (especially when sitting down), using a push toy and increasing her overall stability to move her toward walking.  It may take a while yet.  And with Cora it is so hard to say.

I've learned that it's really all about waiting until she's ready.  Trying to wait patiently and not get too frustrated seeing 6 month old babies doing things she's just now doing at 2.   Pushing her to do movements that she doesn't want to do doesn't work.  When she wants to, she'll figure it out.  And she's doing it; albeit very slowly.

For the record:  this is pretty much just my thoughts on Cora's gross motor skills.  I am fully aware of her strengths in other areas: signing, social skills and interaction, and extreme cuteness, to name just a few. 

The Big Girl

We spent Cora's second birthday just the three of us in a very Cora-centric day.  It was a blast.

The day started with a surprise video from her cousin Kai, who happily sang her parts of Happy Birthday and told "Can't wait to see you, Towa!"

We celebrated by doing all the things we thought Cora would love to do.  Instead of a cake, we started off the day with a birthday cinnamon bun.  But Cora wasn't that into it, so she got her very favorite food instead:  a bagel with cream cheese.

"Mama, what is this? Can I please have a bagel?"

Then we took her to OMSI (the Oregon Museum of Science and Industry) where there is an incredible play area for young kids. She had a blast in the pre-walker area and took over the ball pit.  Then she ran into her favorite musician, Matt, AKA Talullah's Daddy.  Look how excited she was to see him!

"Hey!  I know you!  But where's your guitar?"

She explored the sand area, the big wooden blocks, the market and kitchen complete with tons of toy food, the water play area and more.

But it was no surprise to us that she gravitated right to the book corner, where she happily sat in Daddy's lap and devoured all the science books.  Have I mentioned that science is in her genes?

Once at home, she opened some gifts.  Books, mostly.  She was pretty excited to get some new ones by her favorite author, Eric Carle.



And she got a new simple shape puzzle, as she continues to learn about shapes.

We finished off the day with her favorite pizza and some episodes of Signing Time.

A lovely day with our happy little 2 year old girl. 

And the birthday fun will continue.  My sister is flying into town soon, so we'll be celebrating both Cora and her cousin Kai's birthdays with a a bash pretty soon.

Stay tuned!

My Birthday Girl - 2 Years Old!!!

My dearest Cora Bean,

Today you turn two years old.

We've been working on teaching you to say "two" for weeks.  When we ask you how old you are, you grin, hold up both your index fingers and say "boo!"  And oh, it just melts my mama's heart every time.

I can hardly believe you've graced our lives for two years already.  I think back to the days and weeks after you were born, a time filled with so much worry and stress and fear. 

Last year I experienced so many emotions leading up to your first birthday.  That anniversary brought up so many feelings that I had been trying to push away.  But it was cathartic. I was able to recognize how hard all your medical problems and hospital stays were for me. I was able to revisit your difficult birth, and acknowledge and accept my subsequent feelings and fears.  I was able to learn to forgive myself for being weak, for being scared, and for being ashamed.  I started to let go of my guilt and feelings of unworthiness and to accept my conflicting thoughts and emotions as a true and valid part of me; a part that was critical in taking me to where I need to go.  And I learned that having those experiences didn't diminish my love for you in the slightest.

This year your birthday is different.  The emotions I've been feeling are less tumultuous.  Somehow my memories of the first few months of stress and worry are getting hazy.  Even heart surgery seems so long ago.  The joys of the ordinary life we've been living have finally started to eclipse that initial taste of heartache.  And I am so, so grateful.

Cora, I am so proud of you.

I am proud of each thing you do and of every thing that you so painstakingly accomplish every day.

But my pride for you extends so far beyond what you can do.  My pride extends to what you cannot yet do.  It extends to your attitude and your meltdowns and all the things that we work on together every day.

When you were tiny, I told myself that you'd be the smartest, most accomplished person with Down syndrome ever.  I was so sure that with enough work, it would be so.  And of course I do want you to experience success and accomplishment.  But now I know that even if you never talk or walk I will still be proud of you.  For you are succeeding in the most important thing: bringing light, love, joy and meaning to so many lives.

This life I am sharing with you is indeed special.  But I know that you were not trusted to me because I am special, as so many would say.  Those that tell me that you are the lucky one, to be born into our family, don't know the real truth of it.  But I do.  We are the lucky ones, because we get to share our lives with you.

If I could bottle up your snuggles and your beautifully blown kisses, your giggles and your enormous silly grins, I think maybe it could change the world.

Thank you for being you.  For being my baby and for not growing up too fast.  Thank you for inspiring me every day, for making me laugh and making me cry.   For letting me slow down as I hold you close.  For showing me that good things come to those who wait.

Thank you for teaching me not to take you for granted.  Thank you for showing me what is truly important.

I love you, sweet girl.

Read Me a Book

"Book" is probably the spoken word Cora uses the most.  It sounds an awful lot like most of her other spoken words.  "Booooooo..."  Said along with the sign, that word gets some serious mileage around here.

But nothing gets as much mileage as her actual books.  Whether she's throwing them all over the floor again and again, or gingerly choosing one book at a time and scooting it across the floor for me to read, this girl is a serious bookworm, just like her mama.

Here she is chasing me around trying to get me to read to her.

Could you resist this face?  (Even with traces of yummy stew from lunch on the cheeks?)

Cora finally got fed up with the camera and covered it with her book.  Point taken, Beanie.

To Tide You Over

For the grandmas and the aunties and the friends who need their Beanie fix....

Cora wants to wish a very Happy Birthday to her cousin, Kai!  We love you Kai!