Sunday, January 24, 2016

Waiting for Maturity to Kick in: Down syndrome and Behavioral Challenges

Josie will be six in a couple of months (*sniffle* I think I have something in my eye) and it seems like we're entering a phase of increasingly challenging behaviors.  I have had many friends with children with Down syndrome in Josie's age range frequently complain to me about various challenges including aggressive behavior/hitting, running away, and general defiance/obstinacy/disobedience.  

Josie is certainly not above a little non-compliant behavior.  Take, for example, our trip to the zoo last fall.  Initially, she did fine.  She rode in the stroller with Lydia and looked at the animals.
The attractions maintained her interest for a little while...
...but at some point, she decided she was over the zoo.  You can see it starting to happen in this photo:
By the time we made it to the Desert Dome, Josie was done.  Bring on the whining and adamant "NO!" every time we suggested Josie check out something cool.
When she pulled the umbrella down over her seat and retreated into solitude, it was quite obvious that no amount of effort on our part would extend her interest in this excursion.  
What would have happened had Josie not been in the stroller?  Well, she wouldn't have made it nearly that far around the zoo because her gross motor skills (and inclination) do not allow her to walk great distances.  And once she decided she was done, we would have had a child face down on the pavement in protest.  

Like many of my friends who are parenting children with Down syndrome, I get frustrated by Josie's behaviors.  As a good friend and parenting mentor explained to me, our kiddos have delays so the behavior concerns that affect typically developing children will affect our children, too, however it won't happen until an older age and it may take longer to graduate out of these stages.  

But they are just stages.  And our children will graduate out of these stages.  When I get consumed by the frustration, I stop and remind myself that my sister, Leanne, went through all of this, too.  My mom will testify that getting her out the door for school during her elementary years was not always a pleasant experience (I'm pretty sure when Mama Hop reads this, she will have snorted right about now).  
But look at Leanne today!  She wakes up, gets dressed, eats breakfast, and makes it out the door without supervision and prompting.  She uses the restroom without supervision and prompting.  She does not run away from my mom nor does she flop on the floor in protest.  She exhibits socially appropriate behavior in public.  
Leanne acts like an adult because she is an adult!  Funny what a little maturity will do!
And while we are fortunate to have an older role model for Josie who helps us keep things in perspective, we do have our difficult days just like everyone else.  And we certainly don't claim to have all the answers, nor do we consider ourselves perfect parents by any stretch of the imagination.  
The one resource I turn to when I'm at my wits end is behavioral therapy.  I've blogged before about our struggle to get Josie to end her reliance on her G-tube and to learn to eat orally (to read those posts, click HERE and HERE).  During this time, we sought the help of some incredible pediatric behavioral psychologists who taught us some really simple but effective strategies for encouraging compliance.  Some of the things that we learned seem like such common sense that I'm embarrassed to admit that it took a PhD telling me for it to click.  But I do believe when you're in a frustrating behavioral situation, the stress of it clouds your judgement and inhibits you from seeing it objectively.

That being said, while we wait for the maturity to kick in, here are a few basic tips that have helped us:

1.  First,  ____.  Then, ____ - When we learned this, it applied to eating.  First, take a bite (non-preferred activity).  Then, you receive an incentive (preferred item).  Now, this strategy is used with all of our kids, regardless of chromosome count, and it is a life saver.

For example, if Josie is pitching a fit, not wanting to climb the stairs, I may cue up Taylor Swift on my phone.

First, climb the stairs.  Then, Taylor.

As long as she's heading up the stairs, the music will be playing.  If she flops down, the music stops immediately.  Her preferred item is contingent upon compliant behavior.

* Tip - this strategy is most effective when the preferred item is reserved only for special occasions.  For example, kids love technology.  My kids would walk through fire for some iPad time.  So we keep the iPad restricted and out of reach.  They earn iPad time through good behaviors.  If they had 24/7 access to the iPad, they likely wouldn't have any motivation to clean the playroom to earn it.  Thus, behavioral therapy stresses the importance of keeping a few coveted items restricted.
2.  An ounce of prevention is worth a pound of cure - In other words, it's better to prevent some behavioral problems from happening than to try and fix them once they've started.  Embarrassing story alert: During the whole oral feeding journey, I was complaining to Josie's behavioral psychologist that every time I set the cup on Josie's tray, Josie would throw it.  Guess what she said: "Stop setting the cup on her tray."  Light bulb moment!

You know the problem I mentioned earlier with Josie's tendency to flop on the ground in protest when she doesn't feel like walking?  Prevention: Josie rides in the stroller.  
That's not to say that we don't practice walking obediently by mom's side.  We just don't do that when I'm by myself with 3 kids trying to be somewhere on time.  We practice Josie walking in a low-pressure situation where I can focus on just Josie, or when I have help; and when we're not in a hurry.  Otherwise, she rides in the stroller.

Another example: Josie has sleep problems (I'm sure this will be discussed in a future post).  I found myself in the frustrating nightly ritual of going into her room in the wee hours of morning, taking Josie's books away, turning the lights off, and escorting Josie back to bed.  Then - light bulb moment - we disabled the overhead light in Josie's room.  I can't stop her from waking up at 2am (hopefully her CPAP will stop that), but I can keep her from turning on the lights and hosting her own personal book club at this outrageous hour.  It sure discourages the 2am antics when you can't see!  May as well roll over and try to go back to sleep.  Or shout the alphabet loudly and slowly from your bed.  I haven't figured out a prevention for this yet.

3.  Shhhhhh! - Josie's behavioral psychologist in the tundra taught me this one: We've all been in that embarrassing situation where your kid is throwing a fit in the grocery store because they want something.  And yes, you could abandon your cart full of groceries and walk out, but that's not always practical.  Especially, if you have one of those crazy families that expects to eat and this is your only chance to get to the store.  So if you need to give into your child, to shut her up so you can accomplish a necessary task in peace, first make the child do something for you.  Our go-to is "Shhhhh!" in which the child has to stop whining and shush herself.  I call this "Show me 'quiet'!"  Once the child has obeyed my request, I will honor her request.  That way, the child is not associating victory with fit throwing; she is associating getting what she wants with following mom's directive.  Josie is a BIG whiner so I employ this tactic frequently.
 4.  Tell the child what you want them to do; not what you want them to stop doing - I've heard this is especially important for children with Down syndrome as they tend to be more concrete thinkers.  Back to the cup throwing example - After some intensive professional intervention, I ended up cutting a circle out of construction paper and taping it to Josie's tray.  Instead of saying "Don't throw your cup," I would say "Set your cup on the blue circle."  We no longer have the cup throwing problem and we retired the blue circle.  But we still employ this technique.  For example, sometimes Josie will fight me when I try to fix her hair.  She will wave her arms in the air and try to push the brush away.  So, instead of saying "Stop," I say "Josie, show me 'quiet hands'!"  Quiet hands is a stance a previous occupational therapist taught Josie in which she folds her hands in front of her on the table.  Instead of excitedly reaching for whatever object the OT whipped out of her bag, Josie had to do "quiet hands" to demonstrate that she was prepared to focus and listen to directions so they could begin the next activity.
In conclusion, we can't offer solutions to every parenting dilemma - special needs or otherwise.  (But an ABA therapist is a good place to start.  To find one in your area, click HERE).  However, we can offer hope and encouragement to the parents of our little chromosomally enhanced friends in the form of this kind and charismatic lady we refer to as "Aunt Leanne."   The journey can have it's tough moments but when you look back someday, that momentary frustration will have dissipated into immense gratitude for the enriching experience that will leave you forever changed for the better.

Monday, January 11, 2016

Make Your Child Brilliant With Walgreens Cookies

Last night I got sucked into this British show on Hulu called "Make Your Child Brilliant."  Is it me or is the title alone intriguing?!  Okay, maybe it's just me.  I'm crazy like that; we've established as much over the years right here on CCE.  Anyhoo...the show was a good reminder that all kids learn differently.  Some kids are visual learners (they learn by seeing - kids with Down syndrome tend to fall into this category).  Some kids are auditory learners (they learn by hearing).  And some kids are kinesthetic learners (they learn by hands-on "doing").

With the technology-induced limited attention spans we all suffer from these days, presenting information in a variety of ways is an even more important method for keeping kids engaged.  Because my children are all in different stages of development and knowledge acquisition, it's a challenge to come up with one academic concept that they can all participate in on different levels.  Granted, (this disclaimer goes on all of my "educational" posts), I am not a teacher.  I have an undergraduate degree in business administration.  I don't come to the table with a multitude of knowledge and tricks.  I'm learning on the job.  But I think that conveys the idea that any mom with Google and a printer (or a glass of pinot grigio, a ruler, and a Sharpie - right, Mom?) can nurture those little brains...
 Josie didn't have school today so we just rested on our laurels in our pajamas.  Just kidding!  Okay, so Josie rocked her pajamas all day and if you have a problem with it, you can come do my laundry.  But we did utilize the time to bond over the alphabet!
 Lydia worked on identifying letters.  Josie worked on matching letters with different colors/fonts to make it a little tricky.  Josie also worked on simple tracing.  
 And when (S)mother hen wasn't working on keeping her sisters' noses to the grindstone, she practiced writing lowercase letters.  
 The video at the bottom of the post shows our activities in more detail, but here are a few little tricks this amateur "teacher" has learned along the way:
1.  "Nice" brand alphabet cookies from Walgreens are excellent tools and motivators.
2.  A broken crayon encourages a proper pincer grasp.  I learned this at the Handwriting Without Tears workshop.  Avoid the big, fat, little-kid crayons because they do the opposite; they encourage holding the crayon in the fist.
3. The dollar store has AWESOME educational materials including the letter tracing books you see here.  And you can't beat the price!
 And the most important trick of all: learning should always involve cheering.  Just ask Josie - there's no such thing as too much shameless self-praise.  If you need some inspiration, check out the hashtag #DailyAffirmationsWithJosie. The secret of life: frequent "Woo Hoo's!"
Merryn's handwriting infomercial at the end of this video montage is worth hanging around for.

Tune in next time when I teach the kids quantum physics with a broken pencil and some Goldfish crackers.  Or not.  

Friday, January 1, 2016

Christmas 2015: Food, Fun, and Family

Even though our 2015 visit with Santa Claus didn't go so well (there's less hostility between Obama and Putin), the jolly old fellow still came through for us this year.
There is a certain magic in having little ones to celebrate with on Christmas day.  
 Seeing those little faces light up when they discover their dream gift has become a reality is so rewarding.  So is Mother Hen's compulsive need to properly dispose of gift wrap immediately upon opening a gift!  (Check our Instagram for more on this).
 Despite her disdain for Santa, Lydia seemed to warm up to the idea of Christmas pretty quickly!
 Christmas donuts will likely become a new tradition around here, as well!  
 Even though our beautiful, white Christmas threatened to disrupt air travel, YaYa and Papa arrived right on time! 
 The fun started all over again with more gifts and attention for our little crew!
 To the girls delight, they were joined by Cousin Abby at the breakfast table the next morning.  The girls couldn't have been any more thrilled if Taylor Swift, herself, appeared in the kitchen.  Cousin Abby is the coolest!
 Abby came bearing some incredibly thoughtful gifts that the girls just adored, including everyone's favorite: books!  Sweet Abby even read to the girls before bed.  
 Another important Christmas tradition we have with the adults in Travis' family is a gift exchange in which we draw numbers and select a gift which we can keep or exchange for another gift.  The spending limit is $20 and the creativity abounds.  It truly is tons of fun! 
 I mean, really, who doesn't want their very own selfie stick?!  YaYa's reaction rivaled Merryn's when she saw her Barbie Dream House!  You are strongly urged to head back over to Instagram to see a photo featuring all of our treasures (click here).
 Food, fun, and laughter are elements we can count on when we're with family...
 ...and a perfect photo of the granddaughters posed and smiling!  Ha!  Just kidding!  
I tried!  We all tried!  Oh well, reality is more fun than perfection, right?  Thank you to Travis' wonderful family for flying across the country to join us in celebrating Christmas 2015!  It was a blast!

Thursday, December 31, 2015

2015 Christmas Card Reveal

Last year around this time, CCE offered a post called "The Top 10 Reasons Why We're Boycotting Christmas Cards This Year" (click HERE, Mom).  This year, we actually pulled it off.  We managed to get cute photos of the girls in their Christmas best:
 Of course the photos were done separately because holding out for a successful group shot would have meant we weren't sending out Christmas cards until 2025 or so.
We were torn on which photo of Lydia to include.  She did her distinguished smile...
 ...but who doesn't love the incredible winking baby?!
 And as appealing as the idea of a lovely card featuring well-groomed, well-behaved, formally-posed children is, we would be remiss not to represent the chaotic reality of life around here.  In an attempt to inject some humor into our holiday greeting, we decided to have fun with the fact that we've had such a nomadic existence.  The 2015 Christmas card also served as a moving announcement, too.
 Drumroll please...
 Front (above) and Back (below).  We even found a spot for the incredible winking baby!
Stay tuned for a recap of our Christmas celebration with Travis' family.  Until then, wishing you a fun and safe New Years Eve and a happy and healthy 2016!

Friday, December 11, 2015

The Baptism From Hell

In the history of the Roman Catholic Church, never has there been a more disastrous sacramental ceremony.  Actually, if you have a story that trumps this one, please share it with me because it will make me feel better.  But for the sake of hyperbole, I'm going to stick with the aforementioned grandiose assertion.

While anyone can be baptized at any time, it's more common to baptize an infant.  However, we moved to another state when Lydia was 3 months old and it's taken us awhile to get our religious bearings, if you will.  Faithful blog followers understand.  It's been a wild ride to say the least...

Anyway, I now understand why 6 weeks of age is a more ideal time to baptize a baby.  Because a tiny infant's screams can't bellow throughout the echo-inducing stone walls of an enormous church quite like an older baby's can.  Because it's much easier to hold a 6 week old who is writhing in torment, desperately trying to escape this holy torture.   And because when the priest pours water on an infant's head, it's far less likely to turn into a wet tee shirt contest for mom.  Thus, making it a more appropriate, pious, and sacred experience for all.

But that's not the way this went down...
I should have known because there was ample foreshadowing.  Shall we start a week beforehand when it occurred to me that Lydia's baptismal gown hadn't arrived yet?  After checking my email confirmation and realizing that I had accidentally had it shipped to our previous address in the Tundra, I placed a frantic call to Nordstrom, desperately trying to rectify the situation.  Major shout out to Nordstrom, Folks.  Their customer service is second to none.  Shop there!  I am hereby a loyal, life-long customer.  

So we had a gown.  We had a bonnet (which she refused to wear).  We had a godmother(or a "Mother of God" as Leanne prefers to call herself).  We had a godfather (but he was unable to attend.  Lucky jerk).  And we had a scripture reader...

...until I re-read my letter and realized that we were not the family that was assigned to scripture after all.  Poor Merryn had read through John 3:1-6 with Mama Hop time and again.  She was ready.  She was excited.  This was her big break!  

But that little snafu was easily fixed when the designated scripture reader (who happened to also be our dentist) happily relinquished scripture-reading duties and was quite relieved to be replaced by our dimpled doll face in her plaid dress.
But while Merryn was reading her scripture during the ceremony, Josie escaped the old wooden church pew (turns out she does have gross motor skills when she wants to) and made her way up to the alter where she began handing out hugs to perfect strangers (other parents and godparents) who were all gathered in stoic devotion, trying to attend to the sacred ceremony.  Josie must have sensed their nerves were rattled by the tormented wailing of her 18 month-old baby sister so she thought a hearty dose of affection would help.

Meanwhile, Travis and I were taking turns wrestling this tortured tot into submission and catching her when the other parent began to lose the battle, all the while dripping with sweat from the ultimate cage fight that Lydia had initiated.  No joke.  The world's happiest, most pleasant baby had turned into a monster in the presence of God and everyone (literally).  No one could hear a world the priest said over her screams.  I'm really surprised he didn't stop the ceremony to perform an exorcism.  Seriously, in any other scenario, you would have taken your baby out of the room.  But we couldn't exactly do that, seeing as how she was the main attraction.

Travis said he was shocked that the holy oil didn't sizzle when the priest anointed her with it.  And then, it was time for the grand finale: the holy water.  One by one, I gestured for the other families to take their babies up ahead of us because I knew that this would take Lydia's tantrum to a whole other level.  And it did.  As soon as we stepped up to the baptismal font, Lydia revved up with a vengeance!  She clung to my neck and wailed in agony while Travis desperately tried to force her upper body backwards so the priest could pour water on her blood-red forehead.  The priest looked at me and said "You're probably going to get wet."

Uh, yeah.  Whatever, Father.  I'm already drenched in sweat from this back-ally brawl my child has unleashed on me.  I have bald spots on my head and she has clumps of my hair dangling from her angrily clenched fists.  What's a little holy water?  Just dump your pitcher and let's get this baby out of her misery!
And with that, she was initiated into the Christian faith, freed from original sin, and ready to carry Christ's light out into the world.  

Just watch her become a nun.

Thanksgiving 2015 Wrap Up: ¿Dónde Está Santa Claus?

This blog post is brought to you by insomnia; because there's nothing else to do at 4am.

Kidding!  Kind of.  Sometimes I think my body wakes me up because it knows this is the only shot I'll have at having "free time" all day.  And I've been meaning to blog about Thanksgiving for 2 weeks now so here we go...
Each year, we alternate spending Thanksgiving and Christmas with Travis' family and with mine.  This year, we enjoyed Thanksgiving with Mama Hop and Aunt Leanne.  We also did our Christmas gift exchange during this time.  
Mama Hop did all of her signature grandma-ing (yes, it's a verb.  Just go with it.) and meal prep.
Aunt Leanne performed all of her auntly (Yes, it's an adjective.  Go with it.) duties.
And we just basked in the joy of spending time together as family.  Just look at these two...can't you just feel the love?
Hold up!  Wait a minute!  Travis, you better watch your back.  You see, everything was fine and dandy until Travis made a little slip up and mentioned to Mama Hop that Leanne had exceeded her one-soda-per-week limit (a doctor encouraged limit) during an outing they took to Home Depot...
If revenge is a dish best served cold, that was downright icy!  She's coming for you, "Brother"!

Now, where were we?  Oh yes, Thanksgiving.  As Merryn is known to do, she imposed a "princess dress" wardrobe theme on Thanksgiving 2015 so it was very "fancy," and when you're four, no superior adjective exists! While the food cooked, Leanne supervised the girls.  Josie took a preparatory snooze in anticipation of the feast she was about to consume.  See that little pink, sparkly heap in the middle of the playroom?  She folds in half for easier storage.
Then, it was time to celebrate our blessings and give thanks.
After we devoured a delicious meal, the customary Christmas decorating commenced.
 While Travis wrapped the banister in garland, Aunt Leanne and Merryn began trimming the tree.
In true baby sister form, Lydia was underfoot, ready to help.  That is, if "helping" means removing ornaments as quickly as Merryn could hang them.  The following photos are blurry but the the shot of  Merryn admonishing Lydia is too funny not to feature:
And as the evening winded down, Merryn taught Leanne how to text on the ipad.  
And
Leanne
taught
Merryn
how
to
hit
"enter"
after
every
line
and 
make
really
cool
columns
of
text.
Those two sent out selfie-filled greetings to everyone they could think of which undoubtedly offered amusement across the country.  If you've never seen one of Merryn's texts on Instagram, do yourself a favor and CLICK HERE.
On Friday evening, we exchanged Christmas gifts, the highlight of which was a singing chihuahua that Mama Hop found for Josie.  Be glad I didn't post video or you'd never be able to get that ridiculous song out of your head...

¿Mamacita, Dónde Está Santa Claus?  Dónde Está Santa Claus?

Well, don't just stand there!!!!  Someone find the jolly old fellow and shut this obnoxious rat-dog up already!  Heaven help me, that thing should come with ear plugs and a strong margarita!  Please conk me over the head with one of his maracas and put me out of my misery!  Ahora Por Favor!!!!!   ¡Ándale! 
...Which brings us to the baptism from hell.  Did I just say that?!  Wait - let me go get some more coffee.  I'm going to need it for this story...

Better yet, the story deserves it's own post.  So tune in tomorrow to hear about the incident that was so disastrous, we may never be able to show our faces in church again.