Saturday, July 16, 2016

A "Normal" Life...With Down Syndrome

Yesterday, Travis returned home from a business trip to Brazil.  I anticipated doing some blogging while he was gone but every night, after I got the kids into bed, I crawled into my own bed and crashed.  Parenting is exhausting.  Solo parenting is even more so.  So, this morning, when Travis woke up and offered to take all three kids "off my hands," I thought 'Perfect! I'll write a blog post.'  But after staring at my list of prospective blog post ideas, and even calling my mother, I was less than inspired.  

I scoured "The Mighty" because the editorials on special needs frequently fuel my fire one way or the other...nope.  Not today.  Then it occurred to me; while the topic of life with Down syndrome is a huge part of my identity and an enormous passion of mine, life with Down syndrome is just...life.  Parenting a child with Down syndrome is just parenting.  And having a sister with Down syndrome is just family.
 Perhaps when a parent first receives a diagnosis of  Down syndrome, there is shock and concern over whether a sense of normalcy will ever return.  With that first year, there is a lot of information to process as one adjusts to the transition from a member of the general/normal/typical (all of these words make me laugh because, really?!) community to a member of the "Down syndrome community." 
 And then somewhere along the way, you find your groove, and you kind of forget about this new version of "normal."  I sit all my kids at the table and feed them the exact same meal.  I remind Merryn not to eat 3/4 of her plate and then "trade' with Lydia who has only finished half of her plate.  I remind Lydia to use her utensils.  And I remind Josie not to blow bubbles in her milk straw.  Someone with Down syndrome sits at my table but the vast majority of the time, I don't even notice it.
 I take Josie to physical therapy once a week just like I take Merryn to gymnastics.  I take both girls to swimming lessons.  Someone with Down syndrome rides in my car but that rarely occurs to me.
 We go outside to play.  Merryn would rather ride a bike.  Josie would rather sit stationary in the Little Tykes red car and sing automotive related songs.  Someone with Down syndrome is in my yard, but that's not usually on my mind. 
 When we visit my sister, she showers my girls with gifts.  She gets down on the floor and plays with them.  She is a doting aunt.  Her Down syndrome diagnosis doesn't change that.
 So as proud as we are of our membership in the "Down syndrome community," and as important as advocacy is to us, we still consider ourselves the family next door.  I certainly wouldn't call us "normal" (snort), but what is normal?  We do the things that most families do.  We eat, sleep, love, fight, forgive, laugh, and live our lives...just like those so-called "normal" families.
 So when we disappear from the blogophere, we're just busy being us.  Down syndrome is still a part of us, but it's woven into the fabric of our family so seamlessly that in any given moment, it's virtually forgotten.  This is not to say that awareness and advocacy efforts will cease to spill forth from this blog.  We are honored to have a platform to help create a positive awareness of what life with Down syndrome is really like.  But the truth is, generally, it's just life.
And we wouldn't trade it for the world.

Tuesday, June 28, 2016

I Am Not My Child's Therapist...Or Am I?


This post is brought to you by the fact that I don't have a Facebook account.  I read an article and it resonated with me.  I desperately wanted to read the comments but a Facebook login was required to do so.  Facebook just isn't my scene so in order to explore this topic further, I am throwing it out to all of my old familiar friends in the blogosphere. 

The article I'm referencing is called "I Am Not My Child's Therapist" and it was published on The Mighty (click here).   The author, Heather Kirn Lanier, has a daughter with special needs.  She references how therapists who visited her home during the first year of her daughter's life often left her "handwritten lists of therapeutic tasks" that she should do with her daughter each week, and sometimes, this reduced her to tears.  She recounts how the pressure to set goals and push her daughter towards these goals interfered with her primary role as a mother.  She writes, "The goal of making her different stole energy from the duty embedding in my very DNA: love her.  Love her as she is.  Just love her."

Perhaps this article struck a chord with me because just one week ago, our whole family packed up and traveled to Gillette Children's Hospital in St. Paul, Minnesota, to have Josie examined by their renowned orthopedic team.  I wanted to find out if Josie's gross motor delays (at age six, Josie doesn't run, jump, or climb) could be attributed to a physical disability beyond Down syndrome.  I wanted to see if there is something we possibly overlooked.  Is there an physiological abnormality that prevents her from being able to do the things that other children her age with the same diagnosis easily do?  Is she in pain?  


We waited months for the appointment.  We traveled a significant distance with 3 small children.  We stayed in a hotel.  Travis took the day off of work.  We reviewed the gait lab pamphlet with Josie and prepared her for what she was about to face.  After an x-ray and a thorough examination by a pediatric orthopedic surgeon, we were told that there are no physical abnormalities and that Josie's gross motor delays are nothing beyond Josie taking her time to reach her milestones at her own pace.  He suggested that we keep Josie enrolled in physical therapy.  He suggested continuing to offer her diverse opportunities to explore movement in the hopes that something motivates her to be less sedentary.


On the way home, I apologized to Travis for making him take the day off of work and for wasting his time.  He refuted that it wasn't a waste of time because we got reassurance and peace of mind.  But I couldn't help but wonder if this was a sign that I've become too proactive/pushy/aggressive.  Should I step back and just accept Josie as she is?  Let Josie be Josie?  Why am I always trying to advance her skill acquisition in every possible area?  Am I a special needs "stage mom"?  Do I just need to back the hell off?  


Enter Ms. Lanier's article which stirred my neurotic pot that was already approaching a rolling boil.  Where, exactly, is the line between "You can do it!" and "You do you."?   I sought insight from several trusted friends; mothers and siblings of individuals with special needs.  Each person offered unique perspective on the situation.  And I hope they'll forgive me if I anonymously quote them:



1.  I draw the line when my gut tells me it's more about me than him [son with special needs].  If I feel the least bit like I'm trying to fix rather than help, I know I'm doing it because of me.



2.  I am not a home educator.  I hated the speech therapist who sent home countless worksheets.  His old therapist recommended various games and activities so all the kids were just playing together.  My son loves board games.  He hates worksheets.  It wouldn't really be quality time for us.



3.  I'm on a mission to help mold all of my children into the best little people that they can be and if that means that my daughter needs a little extra help, well then that's what she needs!  If  you can help to give her that extra leg up in life, then why wouldn't you?  


4.  Stuff I do on a daily basis is over enunciate my words to prompt her speech, count everything, show her letters and words when I see them.  I guess I don't consider that therapy.  But at the same time, I do it way more with her than my other kids, that's for sure.  


5.  While I appreciate not wanting your life and your child to be judged on you becoming PT or OT, if you don't have the repetition, then it's not becoming a learned behavior.  



6.  It doesn't have to be "fixing," it's about encouraging and not enabling them to be less than they can be.  It goes for all kids.  If I don't expect my [typically developing] son to do well in school, he will slack and he will live at home forever.

As Lanier questions, is it our job as parents to be our childrens' educators and therapists?  Are we measuring our success as mothers by our child's outcomes?  Are we promoting development or trying to make our children different?  Is this issue exclusive to raising children with special needs?



As always, your comments are welcome...

Saturday, June 18, 2016

Weekend With Aunt Leanne: Part 2 (The Kiddie Pool Incident of 2016)

Where were we?  Ah yes, the kiddie pool incident of 2016.  Not to be confused with the hotel kiddie pool incident of early 2014 in which a child we thought was potty trained and opted not to put a swim diaper on, was having so much fun at a hotel pool that she didn't want to stop for a potty break.  This became evident when said child left a smeared brown trail behind her as she slid down the kiddie slide.  I still can't recall that story without cringing.  Now, before we go swimming, we all recite the important mantra, "We don't poop in the pool!"  And everyone under the age of 30 is required to wear a swim diaper - just in case!  But I digress...

With our impending visit, Mama Hop thought that a kiddie pool would be an excellent way to beat the heat and provide hours of entertainment so she and Leanne got in the Mama Hop Rod and drove to Toys R Us.  Being the boy scout that she is...ahem...Mama Hop brought a couple of bungee cords with her so she could attach said kiddie pool to the roof of her small sedan.
 Within a block of leaving the strip mall, said kiddie pool flew off the roof of Mama Hop's car into the middle of a busy intersection!  Time for Plan B:  Mama Hop pulled over at another strip mall, abandoned her car, retrieved the pool, and she and Leanne lugged the darn thing a mile home.  And we're not just talking a remote mile along a country road.  No.  We're talking past fast food restaurants, major retail stores, and medical offices.  We're talking one of the busiest stretches of commercial real estate in that part of the state!  In fact, when Mama Hop suggested we recreate this scene for the blog, she literally offered for her and Leanne carry said kiddie pool to TGI Friday's and pose.  Um, yeah.  No thanks, Mom - I'm going to go ahead and pass on that.  It's bad enough that it happened once.  We don't need to relive the mortification - at least this amateur photographer doesn't care to take part.  We can all use our imaginations and picture Mama Hop and Aunt Leanne carrying this kiddie pool across TGI Friday's parking lot.  That's a sight you don't see everyday.  And yet, when my mother calls to tell me these stories, somehow I'm not even a little bit surprised. 

But look what a great investment that kiddie pool turned out to be!  Oh yeah - the #WorldsBestAunt joined in the fun!  Mama Hop even rigged an umbrella to provide little shade for our fair-skinned diva.
 Coolest. Aunt. Ever!  She humored her beloved "Thelma" (her nickname for Merryn - for further explanation, click HERE) and enrolled in her "Sprinkler Sprinting 101" course.
 Leanne drew the line at "Sprinkler Gymnastics 301".
 Ah yes...but these are moments worth walking-a-mile-through-a-busy-commercial-part-of-town-carrying-a-blue-plastic-pool for.  This is the good stuff!
My babies are now awake so this post must come to an end, but tune in next time for the conclusion of our visit with Mama Hop and Aunt Leanne.

Friday, June 17, 2016

Weekend With Aunt Leanne: Part 1

How much fun can you pack into a weekend with Aunt Leanne?  Enough to fill more than one blog post; that's for darn sure!  We recently took our show on the road (no small feat when you're traveling with 3 children, all of whom are small enough to require car seats) to visit and celebrate the birthday of the World's Best Aunt: Leanne!  

We got to see Aunt Leanne participate in Special Olympics bowling.  Imagine our delight when this handsome fellow walked in (you may remember him from THIS POST):
 Those three precious faces in one shot - does it get any better than that?!  I think not.

If you ever have an opportunity to attend a Special Olympics event, jump on it!  Throughout my life, I've had the privilege of attending many Special Olympics events and the atmosphere is a contagious blend of excitement, encouragement, and fun!  These athletes have an enviable ability to find a victory worth celebrating in so many scenarios.  
You walk through the doors and friends cheer your name - celebrate!
You knock over one pin - celebrate!
Your competitor gets a strike - celebrate!
You sink a gutter ball and your friends respond with a hug - celebrate!
Your family comes to cheer you on and you get to introduce them to everyone you know - celebrate!!!!!

Josie even caught the fever!  She sat in that chair and took it all in.  It was pretty clear that she was picturing herself in that uniform someday...
 Go Aunt Leanne!!!!
 Afterward, Mama Hop and Aunt Leanne insisted we take the kids to a candy store.  Because everyone loves kids on a sugar high, right?!
 They were like, well, kids in a candy store!
 Nothing can extinguish the joy of being a kid in a candy store...except, maybe, when your mom and dad cut you off.  

No worries - that's why you have an Aunt Leanne!
 You've gotta love Aunt Leanne!
 Alright, my little munchkins are up and eager for breakfast so this post must come to an end.  But check back because our visit continues with a story about Mama Hop, Aunt Leanne, and a kiddie pool that is so nutty/embarrassing/funny/typical, that it probably deserves it's own post...
...as well as many more fun photos.  Stay tuned!

Saturday, June 4, 2016

Happy Birthday, Aunt Leanne!

She's the world's best sister!
She's the world's best aunt!
Today we celebrate Leanne.  

The world is a better place because you're in it.  We love you, Leanne!  Happy Birthday!

Country Time Lemonade Commercial Summer

Do you remember those Country Time Lemonade commercials from the 90's?

(Hear the narrator's deep voice dubbed over soothing jazz tunes)

Summer...ahh...warm breezes blowing...laughter with friends...and ice cold Country Time Lemonade...

(or something along those lines.  If this isn't ringing any bells, click HERE).

I love those darn commercials!  That is what I wanted for our summer: Picturesque walks where the warm sun shines through the trees that have created an umbrella over a scenic path...
...laughter echoing from a tire swing as it sways in the wind (pretend it's swinging out over a pristine pond and that my children are competent swimmers)...
...And glowy images of little ones benevolently sharing ice cream - a sweet escape from summer's heat.
But we're one week into summer and already, my Country Time Lemonade commercial has been - (insert sound of an old school record player scratching to a halt) - replaced by this insanity:
You can't really read the chicken scratch on my calendar but you don't really need to.  I have fallen into the over-scheduling pit that so many moms of this era fall prey to.  My kids need daily swimming lessons - it's a safety skill!  They need weekly gymnastics lessons AND gymnastics camp.  Don't forget Vacation Bible School - they need some Jesus in their lives.  And obviously Josie needs three therapy sessions a week (PT, OT, and Speech, y'all) PLUS two tutoring sessions so her math and literacy skills don't get rusty over the summer.  And let's not forget play dates!  Social skills are important, too!  Mix in a sprinkling of doctors appointments and various other commitments and you've got one crazed mama and ZERO signs of the Country Time Lemonade commercial summer.

I didn't even make it through Thursday on the first week of summer break before the already questionable fibers of my sanity started unraveling.  I asked Travis to take Josie to one of her evening commitments because I really needed to go for a walk to clear my head and commune with nature.  It was lovely.  So lovely that I sent Travis the following text:
...that was right before I ran over Lydia with the stroller.  She's fine.  Totally fine.  But we learned and important lesson about always using the seat belts and never trying to escape a moving vehicle.  She insisted on walking home after that.
What does a fun, relaxed, Country Time Lemonade mom do after that?  Well, she lovingly makes dinner for her family while welcoming help from eager little ones...We decided to follow the recipe on the Triscuit box.  We're fancy like that.
That was right before Lydia fell off of her stool...

PAUSE DINNER PREPARATIONS AND SOOTHE CHILD

...then spilled water everywhere...

PAUSE DINNER PREPARATIONS AND WIPE UP SPILL

...and while I was lifting the glass on the kitchen table to clean it up, Josie snuck her finger under there and I accidentally laid the glass on it and pinched it...she wailed so much I felt awful...

PAUSE DINNER PREPARATIONS AND SOOTHE CHILD

...and the pasta boiled over while I was apologetically soothing her.  I cast them to the playroom where Lydia committed an offense so vile that Merryn put her in time out.  And Lydia obediently went and sat on the stairs.  At this point, I couldn't stop to get involved in that because dinner never would have made it to the table...
...and I never would have received culinary compliments like Travis' (crunching on the unusually textured, Triscuit-coated chicken that basically tastes like...well...chicken covered in Triscuits), "It's good, but... they make this stuff called Shake & Bake and it's pretty good, too.  Probably a lot easier."

Once again, this is why I don't cook.

But at least I got a lovely centerpiece out of the deal...
After bath that night, one of my children, who shall remain nameless, ran MY hair comb down the crack of the rear end of another child, who shall remain nameless, like she was swiping a credit card through the machine - the perfect ending to a day that left me at the intersection of laughing and crying...so I tucked those little darlings in bed and I came to my desk and made my own Country Time Lemonade commercial.  Enjoy!

We'll leave the light on for you!

- Wait - wrong commercial.

Whatever.

Happy Summer, Everyone!

Friday, May 27, 2016

May Update: Reality on the Rocks

May has been a busy month and it has also been one big, emotional roller coaster ride.  Travis was gone on business travel, we had visits from both sets of grandparents, we lost our dog, our baby turned 2, and Josie graduated preschool.  Combined it was a blur of happy, sad, stressful, proud, grateful, overwhelmed, and exhausted.  It's a confusing mix of "ready to move forward with the leisurely days of summer" and "wishing time would stand still so you could bask in every precious minute of the present."  Alas, time marches on and we do our best to enjoy each moment and preserve them with fun photos like this one of YaYa and Papa's recent visit...
 As always, we had a wonderful time with YaYa and Papa.  We enjoyed the beautiful weather that Spring has finally bestowed upon us.  And we celebrated the birthday of this little sweetheart...
 Is it me or was it just yesterday that Lydia arrived?!  From day one, she has had the most delightful disposition.  She's so pleasant and agreeable.  Her favorite response to questions is an enthusiastic, "Sure!"  She fits right into our family beautifully.  She serves as a trusty sidekick, eager to do everything that her big sisters do.  Josie and Merryn love to read, and Lydia (aka "Biddy") loves to be read to.  Josie and Merryn use the potty, and Biddy is eagerly potty training herself so she can keep up.
I'm not going to call out the particular family member whose emotions rolled down her cheeks as she kissed her baby goodnight on her last evening as a one year-old, but her name is spelled the same forwards and backwards and it's not Dad.  *Ahem*
She's my baby and I'll cry if I want to!
 Speaking of babies and emotions, does anyone remember THIS POST about Josie's first day of preschool?  Time is really playing tricks on me because that post is dated 2014 in the archives and I know it's 2016 now, but holy mother of all that is holy there is just no way that 2 school years have passed and we're here at preschool graduation already!
Look, Mom - Josie is channeling Rodan!  See?!  I did pay attention in art history class in college!

This afternoon, with the soundtrack of two wailing children in the room with me, I attempted to write out a card to the staff of Josie's preschool letting them know just what this experience has meant to us.  Between the gravity of the emotion I felt, and the frayed nerves that my children were causing, and the pressure of the clock ticking as the-last-day-of-preschool drop off time approached, I'm sure it was an unedited, incoherent mess.  I parked the kids in front of the iPad and I attempted to recount Josie's preschool journey...

When I dropped Josie off on her first day, I sat in the car, parked in the school parking lot, and I wept.  I texted my friend and told her that I planned to wait there for the next 2.5 hours because if I didn't drive away, it would be like I didn't actually leave Josie.  She convinced me to drive away.  

And here we are, two years later, and I had to request her teacher draft a social story for Josie, explaining that preschool was ending, because she is going to need all of the help she can get to accept this blow.  She literally has a meltdown in the car if I drive by her school and don't pull over and drop her off.  She loves preschool that much!  She loves every single staff member from her teacher, to her aide, "Sweets," to Mr. Don, the school custodian.  She loves her friends and they love her.  She loves the curriculum and she is thriving academically.  It's absolutely incredible.

Beyond that, I explained that as a parent of a child with special needs, the IEP process is riddled with anxiety.  But the wonderful team of educators at Josie's school have eased my fears about Josie's future.  I confidently place my trust in them because they have demonstrated that they will work tirelessly to provide Josie with a customized educational experience that is designed to help her achieve her maximum potential on every level.  What a gift!

With that, I sealed the card and I tucked it into the little pink folder in Josie's backpack, and I loaded the girls in the car and drove Josie to preschool for the last time.  Here we go again with the waterworks...

And, in what seems like a miraculous feat of motherhood, given the fact that this month has left my brain an exhausted and emotional glop of goo, I actually remembered to take a "Last Day of Preschool" photo.  Check it out!
I mean, it's a miracle that I even know where my camera is anymore these days!  And in a rare moment of perfect cooperation, my happy preschoolers were posed and smiling and all was right with the world...until I heard Mother Hen yell "Biddy - NO!!!!" 
The toddler tornado's plans to scale the exterior of the staircase were thwarted by a vigilant big sister who will tolerate none of those unsafe antics.  And once again, my ambitions of photo shoot perfection are replaced by a high ball glass full of reality on the rocks, tossed right in my face.

#WelcomeToMyWorld
#IShouldReallyPutThemInPageants
#PrayForMe
#SendWine

Cheers to summer vacation!