Sunday, September 25, 2016

Q&A with Courtney Westlake, Author of "A Different Beautiful"

Hello Friends!  Today's blog post is not about Down syndrome but it is about embracing differences.  I've known Courtney Westlake since childhood.  We reconnected in adulthood 4 years ago, after she gave birth to her daughter, Brenna.  Brenna was born with a rare skin condition called Harlequin Ichthyosis.  This condition can be life threatening because it can impede Brenna's ability to regulate her body temperature, maintain hydration, and fight infection.  But just like Josie, Brenna is a fighter.  She has overcome many medical challenges and today she a charming and vibrant almost 5 year-old girl!  
In her new book, "A Different Beautiful," Courtney documents her journey in parenting a child with Harlequin Ichthyosis.  Many mothers in the special needs community will identify with Courtney's story but the book has universal appeal because as rare as Brenna's condition is, Courtney's writing is engaging and relatable.

But instead of subjecting you to a dry book review written by yours truly, I wanted you to see for yourself how witty and fun Courtney is so I asked her to do a Q&A with me.  Her responses will undoubtedly resonate with all moms...
1.  What's the most ridiculous argument you've ever found yourself in with Brenna?  Memorable temper tantrums? 
It was the day before Halloween, and I wanted her to wear this adorable festive Halloween outfit to school. She threw a huge fit, and wanted to wear something else, so I was all like “FINE, insane little person, have it your way!”
So I got her all dressed in whatever non-holiday outfit that was striking her fancy that morning… and the second I pulled the Velcro on her shoes, she launched into a wailing that she WANTED TO WEAR HER HALLOWEEN OUTFIT.
Sometimes, I just can’t even handle the irrationality…

2.  If your life became a reality show, what scene would you want edited out?  
All the yelling. And the wine bottles. Did I say bottles? I meant glasses. Er, glass. The wine glass.

3.  Where is your favorite spot to hide from your kids when you need a break?
I take a hot bath nearly every day. And they have come to know that if I’m in the bath, I can’t tend to their every whim. It’s glorious.

4.  What's the most absurd fight you've ever broken up between your kids and what is your go-to method for sibling peace? 
My kids don’t often fight over physical objects – toys and such – but one day, I came downstairs to find Connor was chasing Brenna while she was dearly clutching the grocery store coupon booklet. They were both wailing about wanting to hold it, and that’s when I knew we had reached a new level of summer crazy.

Also, an ongoing fight that I have to “break up” is that Brenna loves to say “I love you, Connor.” But when Connor says “I love you, too,” she responds once again “I love you, too” back to him. And this repetitious proclamation of her love drives him CRAZY. So yes, I actually have to make my kids stop saying “I love you” too much to each other!

5.  How are your kids like you?  Does this scare you?  
It’s so funny to see your own tendencies and characteristics manifest in your kids…and you wonder if it’s nature or nurture, or maybe just both. But Brenna has a stubborn streak like no other, and her father points fingers at me. And OK, fine! He’s probably right! Connor is introverted and likes to play by himself a lot, loves to read and learn, and that’s how I am too. We mesh much more easily because of that, as we both give each other our space. Brenna, on the other hand, is extroverted and she gets filled up by being around me, while I get depleted by her, so that makes for some interesting days!

6.  In your book you talk about how you began to become a different person on the day Brenna was born.  You say that that was the day that God gave you a choice about whether to embrace the "perfect and unique differences" that He placed in your life or whether to run toward "resentment and bitterness."  You write, "And it was not simply a matter of accepting my daughter as she was born and as God created her.  No, He moved much deeper than a mother's unconditional love for her child.  I felt Him challenge me, day after day, to tear down the preconceptions and the misconceptions of life as I knew it."  

What experiences and resources helped guide you along this journey to "admire the beautiful that can be found in these differences," and how can other mothers make a purposeful effort to do the same?  

As moms, we want to know how this illness, condition or disability will affect our kids, ourselves and our family’s lives - Will it get better or will it get worse? What will our days look like now? What will our years look like? What will my child’s life look like? And for many of us, that can lead to a lot of thoughts about what might NOT happen. If you’re like me, when you got a diagnosis or prognosis, you maybe started to think about the limitations this would place on your child or on your family… the Won’t be Able Tos and the Might Nevers.

But what I have discovered over the past 4.5 years is that life has become only as limiting as we let it. It is up to your child alone what will limit him or her, and there will be far many more Cans than Can’ts. Two things that can never be limited are the hope and the love in our family, and with that, we’ve found that our children will truly amaze us with what they can do.

What I would encourage other moms who are in a similar place to do is to look at each new situation as “how can WE do this, or how can MY CHILD do this?” – not with the perspective of how they compare to other children but “what might this experience look like for us, or how can we enjoy this experience in our own way?”

The other thing I hope all moms do – special needs or not – is to choose to connect with each other, and to reach out, giving and accepting help. Sometimes, seasons of motherhood can feel isolating until you start to hear about others’ stories and experiences, and you realize that we ALL go through struggles and hardships, in addition to triumphs and celebrations. Those struggles may look very different from each other, but our feelings aren’t so different – we all want connection, support, to feel loved, and we can all learn from each other. 

Courtney's refreshing honesty about family life makes it easy to feel a connection with her.  The unique component of her parenting journey offers so much to learn from as we all strive to raise our children to embrace one another with kindness and to seek the beauty in our differences.  To purchase your own copy of "A Different Beautiful" by Courtney Westlake, click HERE. 

Courtney's heartfelt message about continuing to discover beauty in the unexpected is documented on her blog, "Blessed By Brenna."  

Sunday, September 18, 2016

Down Syndrome Diagnosis: Free the Child's Potential

I recently read an article where a mother whose baby had just been diagnosed with Down syndrome describes the experience as falling into a black hole.  She perceived a bleak future with her son; one in which they were both social outcasts.  This mother explained how her Internet research made her feel more defeated by outlining a long list of things her baby probably wouldn't be able to do.

These types of stories make me wish that I could stand on rooftop of my home and beckon everyone in the whole world to come meet my sister and my daughter.  If everyone had a chance to truly experience Down syndrome like I have, a Down syndrome diagnosis would be met with hope; the same type of hope for the future that awaits any other baby that is welcomed into the world.
As I find my way along the journey of parenthood, I am constantly reminded that there are more parallels in parenting children with and without special needs.  The experiences are not identical - but no two parenting experiences are, regardless of a child's needs.  I have been parenting for six years now and I still don't know what I'm doing.  I don't know what any of my children will become.  But I have immense hope for their futures.  I believe each one of them has incredible potential.  
All too often, society measures a successful individual by how many advanced degrees he earns and how much money he makes.  With that standard of measurement, it's easy to see why individuals with Down syndrome are not valued.  It's very clear why the diagnosis is perceived as negative.  However, there is more than one path to a successful and fulfilling life.  Growing up with a sibling with Down syndrome helped me to see that developing our own gifts and using those gifts to help others, striving to attain our highest potential and leaving this world a better place because we were here, and enriching someone else's life because you were in it - that is a meaningful life.  If you use that standard of measurement, the value of my sister's life is inexplicably profound.  The sacrosanct virtue of her life is the foundation upon which my worldview was built.

Because of the impact that my sister had on Travis and I, we welcomed a baby with Down syndrome with immense hope.  We knew that she was filled with potential and that the world would be better because she was here.  And just like with our other children, we are invested in helping Josie achieve her greatest potential so that she can set goals for herself and strive to meet them.  Her path will be different.  Everyone's path is different.  But everyone's path is meaningful.
(Pardon the messy hair)

Tuesday, September 13, 2016

Life's Greatest Teachers

This morning we were running late for school.  As I stood in the garage and watched Josie climb into the car at a pace a turtle could run laps around, pausing after she moved each limb, looking around to see if anything about the backseat had changed since yesterday, stopping to run her hand along the leather of the back of the passenger seat as though she was inspecting it for Consumer Reports, I impatiently snapped "Josie, I need you to get in the car faster."

Merryn piped up, "But Mom, you know she has Down syndrome.  That means she's slower."

It was so innocent.  So matter-of-fact; issued with such a benign and blameless tone.  And despite the fact that I've lived with Down syndrome my whole life, and I am well aware of what she was referring to, I needed the reminder in that moment.
A couple of weeks ago, a friend was voicing concerns about her 5 year-old daughter with Down syndrome.  She was worried about the impact of the diagnosis on her daughter's social life.  What if the other kids notice a difference?  What if there is a divide when her actions/interests don't model theirs?  

I asked her if her daughter appeared to be stressed about this.  Was this worry keeping her daughter up at night?  


Well, if it doesn't bother her, then why should it bother you? 

That perspective came full circle this morning with Merryn's innocent rebuttal to my exasperated comment about Josie's pace.  Josie is in no hurry.  She'll get there when she gets there.  Everyone else can wait.  Their impatience isn't her burden to bear.  

I was humbled.  Is this worth snapping at my children over?  Is this worth driving recklessly in a futile attempt to shave a few seconds off of my arrival time?  


And once again, Josie, with all of her so-called limitations and flaws according to societal perception, becomes on of life's greatest teachers.  And even though I earned my degree in this subject long ago, apparently I can use a refresher course.

Josie is different.  She may move slower.  She may process slower.  She may get there slower.  But it's not wrong; it's just different.  And her pace may be the reminder the rest of us need to question why we proceed with such urgency.  Why do we place such emphasis on arbitrary pursuits that only end up elevating our blood pressure?
That's not to say that we can completely disregard the confines of schedules.  Just like we can't just ignore the significance of relationships and social integration.  But we can take advantage of the opportunity to reassess the weighted value that we place upon these priorities and the contentment that we are unnecessarily sacrificing.

Thank you for the reminder, Josie.  I am honored to be a student in your class.  And Merryn, thanks for letting me borrow your notes.  You always highlight the most important sections.

Tuesday, September 6, 2016

A Kindergarten Social Story

Change is difficult for all of us.  Even if it's something we're excited about, like starting a new job or moving to a new community, change is frequently accompanied by a little anxiety because we don't know what to expect.  For a child with special needs, it can be even tougher and often times that stress manifests as negative behavior.

I recently read that individuals with Down syndrome have a much easier time communicating requests and happy emotions.  However, it's not uncommon for individuals with Down syndrome to struggle to articulate discomfort or negative emotion.  This certainly applies to Josie.  She has no trouble demonstrating that she's excited about something.  She requests songs, snacks, and toys with ease.  However, when she gets upset, I feel like I'm trapped in an impossible guessing game and with each tear she sheds, the collective frustration increases as I blindly troubleshoot a solution to a problem that she can't always explain.

Sometimes instead of getting emotional, Josie will rev up her attitude and accost me with stubborn refusals every step of the way.  And while it's easy to chalk it up to her extra chromosome making her extra stubborn, we've been in behavioral therapy long enough to learn that behavior is communication.  Josie's negative behavior is often fueled by a desire to avoid something.  And if it's something NEW, I can almost guarantee that it will be met with refusals because Josie likes familiarity and she dislikes change.

People with Down syndrome often rely on structure and routines to make them comfortable in a world that often moves faster than their cognitive abilities allow them to easily process.  As discussed in the previous post, sticking to a schedule and preparing Josie visual aids to illustrate impending changes to the schedule help her to adapt.  When Josie is prepared and familiar with what is going to happen, oppositional behaviors are less likely to occur.
When we're preparing for major life events like moving, surgery, or starting school, I will make a social story so we can read it and look at pictures multiple times to help Josie become familiar and comfortable with the change before it occurs.  That's exactly what I did to prepare Josie for kindergarten.  I took my camera to school orientation night and I took pictures of her classroom and teacher so that she would have visuals to accompany her story.

Here are a couple of videos of Josie reading her kindergarten social story: Click Here and HERE.

One of the biggest benefits of a social story is the opportunity to provide a small sense of familiarity prior to embarking upon something new.  The idea is to remove a little bit of the anxiety and hopefully, encourage a more receptive attitude.  

The first few days of kindergarten were difficult for Josie.  At one point, her para told me that Josie had been asking to go home and "cuddle with mom."  It broke my heart.  But, as I could have predicted, with each passing day, Josie's disposition improves.  She does better when she knows what to expect.  She thrives on structure and routine.  Fortunately, she has an awesome teacher and support team who provide just what she needs.  She's brought home worksheets where she practices writing her numbers every day.  By the third of fourth day, her aide told me she got out the pencil and got right down to business writing those numbers.  And in addition to her attitude improving with familiarity, so has her performance.  

The experience has reiterated for me that providing a little extra preparation and with a little more repetition/familiarity, our kids with special needs will have the tools they need to achieve their greatest potential.

Monday, September 5, 2016

Using Visual Aids to Help Prepare a Child With Special Needs for Change

The summer flew by and just like that, our two oldest babies prepared to enter full-day school.  Josie is enrolled in a full-day kindergarten class in the same elementary school building where she attended preschool.  
 Merryn, will remain in her Montessori program but she is moving up a level to the "5 to 7 year old" program where the curriculum advances at the pace of each, individual learner. 
 While transition can be difficult for any child, it is especially difficult for a child with special needs.  The world moves faster than what Josie can comfortably process so when something new or out-of-the-ordinary-routine is thrown at her, it is often met with resistance.  That resistance can vary from verbal refusals to oppositional behavior.  That's why it helps to prepare her as much as possible, for any changes that will be occurring.
It's easy to take for granted that Josie is generally pleasant and in some ways, oblivious to details in the world around her.  However, I've learned that even when she doesn't seem like she's tuned in, she still notices.  She is still aware of change and while she struggles to articulate her confusion/upset in response to change, it may be communicated in the form of negative behavior.  For example, when we thought we had made significant progress weaning Josie from her G-tube and teaching her to eat orally, suddenly, the holidays arrived.  Our house was filled with family and festivities.  Then, as soon as New Years passed, the visitors left.  And Dad left for an international business trip.  Josie was only 3 and she had no clue what had just happened but she communicated her confusion and upset by going on an eating strike and exhibiting really challenging mealtime behaviors.  

Her behavioral therapist told me to make a simple visual calendar and to have Dad talk about where he would be going and how long he would be gone.  While he's gone, we cross off the days and talk about when he will be back.  We can also enhance the calendar with any other out-of-the-ordinary schedule changes such as visitors or parties.  Here is an example of one from August:
Likewise, with Kindergarten starting, we needed to step up our morning routine because getting up and out the door on a strict schedule is critical to the girls arriving at school on time.  Back in October 2015, I wrote a post about the chart that I made to help Josie understand the sequence of steps involved in getting dressed independently (click HERE).  We've been practicing that for months now and she can get dressed without the chart, although I think having the visual and moving the Velcro photos to the "ALL DONE" box is still fun for her.

In preparation for school mornings, I created a more comprehensive chart so that Josie could have a visual aid and follow the sequence of steps to get out the door in an efficient manner.  
This was my initial attempt.  I realized that at Step 7, the activities are done downstairs and it really didn't seem necessary to haul the chart up and down the stairs so I revised the chart to include only the activities that occur upstairs:
The "hug Merryn" step is something that is custom for Josie; she usually requires being beckoned with an open-armed embrace before she'll drag her groggy pajama-clad self out of bed in the morning.  Since Merryn is her roommate, and since Mother Hen is eager to help in whatever way possible, she volunteered for this job. 

Josie earns Mickey-Mouse stickers for each step she completes.  After a week's worth of trial runs with this chart, I realized that laminating it and having reusable laminated "stickers" with Velcro on the back made more sense than killing trees and burning out our printer in the process. 
I use Microsoft Word or Publisher to create this documents.  I invested in a small laminating machine a few years ago and I even have a paper cutter.  But anyone with a piece of paper and a pen can make a visual aid document to help a child understand upcoming events.  In the past, Travis has pulled my paper calendar off the wall and drawn a cartoon version of himself and written "Dad is going to Germany" on his departure date and shown it to Josie.  It can be that simple.  The bottom line is that when you attempt to prepare the child for changes and transitions, he or she feels more confident in knowing what to expect.
Stay tuned for the "Josie Goes to Kindergarten" social story post.

Monday, August 22, 2016

Quick Down Syndrome Tip of the Day

The "Ways I Prepare Josie For Changes" (working title) post is still in the queue, but I would be remiss not to offer you access to a Down syndrome resource that I really appreciate.  It's the National Association for Down Syndrome "NADS News" newsletter and it's available for free online!
Every month, when this thing arrives in the mail, I'm truly impressed with the helpful content and relevant advice.  For example, the July issue has "Parent Tips for Better IEP Meetings".  To read that issue and past issues as well, 

Sunday, August 21, 2016

August Catch Up

Hello Long Lost Blogosphere Friends!  First, let me apologize to the email subscribers who got a blank blog post.  The system administrator (my beloved husband), made some changes to my laptop and I still don't have the hang of things just yet...bear with me.  Next, please accept my apology for our absence.  This summer has been...(exhale)...busy, to say the least.  

We were blessed with a visit from Mama Hop and Aunt Leanne in honor of...
...drumroll please...
That's right!  Our beloved Merryn turned 5.  It's just semantics seeing as how she was born 40 years-old, but we celebrate anyway (wink emoji).  Mother Hen has always had a beautiful old soul and a zest for life that sparkles in her big, blue eyes.  
At age 5, few things rival the thrill of party planning (Merryn randomly schedules parties on my iphone calendar for me to discover and chuckle about here and there).  This year, we found ourselves at Chuck E Cheese again with some awesome friends and neighbors who were brave enough to subject themselves to two hours of the noisy, crowded, chaotic, unique kind of "fun" that only that goofy mouse and his mediocre pizza can provide.

If I never return to Chuck E Cheese, it will be too soon.  I can't say the same for Mama Hop, though.  I'm pretty sure she had more fun than the kids did.  She plays a mean game of whack-a-mole!
Show me the tickets!!!!
The celebration continued throughout the weekend much to Merryn's delight.
This dimpled doll face deserves fanciful festivities that commemorate her for the intelligent, hard-working, fun-loving, compassionate child that she is.  We could not be more proud of her and we look forward to seeing how she will continue to bless the world with her gifts in the future. 
Just a few more photos because, who knows when I'll get around to blogging again...and because that finger wagging Josie gets from Aunt Leanne when she refuses to go upstairs and get ready for bed is all kinds of priceless.  Welcome to my world, Leanne.
The Purple Robe Twins!!!
Mama Hop and Aunt Leanne host bedtime story stations because no one can agree on a book.  

Okay, okay...last one...

Thank you, Mama Hop and Aunt Leanne, as always, for coming to help us out while Travis was traveling and for staying for the birthday fun.  You guys are the best!

And as further proof that we won the family lottery, Mama Hop and Aunt Leanne's visit was followed by a visit from another cute crew: my cousins!  Four years ago, my dad passed away from cancer.  His big brother, my Uncle Jim, was invaluable in helping me navigate that difficult time.  Since then, we've grown even closer as a family.  Jim's son, Steve, is married to a wonderful woman named Jen.  They have two adorable children, Emily and Elias.  
A few months back, Jen and Steve were kind enough to travel to the GiGi's Playhouse gala where I had the honor of speaking.  At that time, we committed to getting our kids together for a visit and I'm so glad we did.  They are the most wonderful people.  We enjoyed the beautiful weather with lots of fun outdoor activities.  Jen is a former science teacher and she eagerly made educational moments out of our daily encounters with nature.  Anyone want to hold a praying mantis the size of your hand?!  
Steve is the most energetic and hands-on father I have ever seen!  He doesn't let his 6'4'' stature prevent him from utilizing the playground equipment and soaring on the swings.  
They both have the most enthusiastic and involved parenting style that is reflected in the kind little souls that they created.  The way they invest in and nurture their children is both admirable and inspiring.  
This picture makes me emotional.  I see so much of my dad here.
It's impossible to put into words how much their visit meant to us.  What a gift!  

Tune in next time because I'm cooking up a post on tools that we're using to prepare Josie to start Kindergarten next week.  I'm hoping blogging will create a good distraction to prevent me from curling up in the fetal position sobbing over the fact that my two oldest babies will be at school all day every day!  Where did the time go???