Down Syndrome and Preparing for Puberty

I have a Type A personality.  I like information; the more, the better.  I like to be prepared.  Sometimes I overprepare.  I can be a little neurotic.  It's part of my charm.  

Our oldest child just turned eleven.  Guess what's around the corner: puberty.  I would be lying if I said that this notion doesn't give me anxiety.  What's a neurotic, Type A mother to do?  Well, I must take the bull by the horns and tackle this head on.  

And as I always have, I'm happy to share my experiences as both a sibling and a parent of individuals with Down syndrome (within reason) in an attempt to benefit the whole community.  Because, despite all of the pitfalls of the Internet, it does allow for a valuable exchange of information.  And this blog is here to offer real life experience that serves as a helpful addendum to any clinical information you can gather from various books and websites.

Step 1: Gather Information - Have no fear: I have a book!  It's a pretty cool and comprehensive book, too.  It's written specifically for individuals with intellectual disabilities in simple and direct language with lots of graphics and photos.  It's called "The Girls' Guide to Growing Up by Terri Couwenhoven.

They have one for boys, too.  You can find it HERE.  

Step 2: Write a Social Story

Last night in the bathtub, Lydia (also known as "Biddy") said to me in an urgent whisper-yell "Mom!  Look - Josie is becoming a woman!" while frantically gesturing to her chest.  You see, Biddy was excited, but she was trying to be discreet.  We knew this day would come.  And if my six year-old noticed it, it's about time we face it.  So today, I stopped into Old Navy and I purchased some cami training bras.

What I did next should come as no surprise: I drafted a social story.  It's what I do!   Here's where my lifetime of experience with special needs comes into play...I've learned, time and again, that the more taboo a subject, the more tempting it is to discuss to whoever will listen.  Take this classic story from Aunt Leanne (I have no idea what happened to the photos on this old blog post!).  I have so many stories involving Leanne embarrassing my mom and I delighted in these stories so much more before I assumed the role of the one who would field the embarrassment.

Every family has a different threshold for modesty and different ideas about propriety and that's okay.  For me, I want my children to feel comfortable coming to me with questions and concerns so I try to be receptive and nonchalant while gently steering our family's values into the discussion.  I remember when Merryn put me on the spot about the birds and the bees and I froze and changed the subject quickly!  You see, she was really young. But she's always been advanced and inquisitive beyond her years.  Mama Hop shamed me when I told her and insisted that the next time Merryn brought it up, that I tell her everything.  And I did! 

Josie is different.  Because of her intellectual delays, Josie needs a very simple explanation, and many, many repetitions to learn a concept.  But the other tricky part about Josie (and many individuals with special needs) is that she doesn't have the same social instincts nor inhibitions that her sisters do.  So if she learns about something that's taboo, she wants to say it as much as possible to get a BIG reaction out of people.  

Pop Quiz: What do we do with attention seeking behaviors?

You named it: We ignore.  I tell Josie where (in the bathroom) and with whom (parents or a trusted adult) she can discuss certain things and when she brings it up outside of those parameters, I remind her once, and ignore the rest.  Without a reaction, the taboo words lose their luster.  

But it's important that we don't avoid discussing these inevitable things for fear of embarrassment.  We need to prepare our kids and we need to allow for enough time and repetition for them to learn how to successfully take care of their bodies.  While I find the aforementioned book incredibly helpful for guiding these conversations, I decided to break each topic down and address them with a dedicated social story for each one, starting with...drumroll please...bras.  

Ugh! Cringe, I know.  But we can do this!  And it's important that we do this.  Because teaching our kids to take care of their bodies, hygiene, and sexual urges is a critical part of health and wellness, peer acceptance, and social integration.

Click here for a free PDF of the whole social story

Here is a clip of Josie's first read-through:

Notice how she hung on to that "we don't talk about it."  As she self-talked herself to sleep, the bulk of the monologue was about "private" and "we don't talk about it."  I suspect there will be plenty of discussion about it whether I like it or not.  LOL!  Such is life with our chromosomally enhanced friends.  It's never boring!  

Disclaimer: While I have resolved to not only educate myself but share my findings via this forum, some topics are difficult to share within the confines of family privacy, internet safety, and keeping personal information personal.  That's why I offer the book recommendations along with advice for how you can draft your own social story.  I am not a professional; just a mom.  Please direct any specific inquiries about your child to your physician or a behavior analyst who can aid in teaching individuals with special needs how to take care of their bodies.

Social Media : Good or Evil?

The other night, I stayed up until 1am writing a post on this topic and I decided against posting it because it just came pouring out, stream of consciousness style, and it got a little too tangy...and verbose.  But I promised myself that I would address the issue of social media on a longer format which leads us to Confessions of the Chromosomally Enhanced.  Welcome back!   

I watched the Netflix documentary, "The Social Dilemma" (three times).  It warns about the dark side of social media and the detrimental impacts social media can have on our kids and on our society.  Ironically, I posted about it on Instagram and encouraged our followers to go check it out:

"The Social Dilemma" underscores the negative side of social media:

"Technology is at the root of addiction, polarization, radicalization, outrage-ificiation, vanity-ification, the entire thing."

                                    -Tristan Harris, Former Design ethicist at Google

The documentary highlights technology's impact on children, and it provides some disturbing statistics about the rise in self-injurious behavior and suicide since the introduction of social media.  As a parent of young girls, this resonated with me.  The most compelling part of the documentary, for me, was the very end (during the credits), when the creators of this technology unequivocally stated that they do not allow their own children to utilize it.   

Let that sink in.

"Social Media digs deeper and deeper down into the brain stem to take over kids' sense of self worth and identity.

-Tristan Harris, Former Design ethicist at Google

Children and teens tend to make decisions based on emotion and not rational thought, thanks to a pre-frontal cortex that hasn't fully developed yet (source).  Consequently, social media poses many risks due to children's limited capacity for self-regulation, their susceptibility to peer pressure, and their failure to understand the long term impacts of one's digital footprint.  But can we admit that even as adults, the dark side of social media manipulates our perceptions at times, too?  

Have you ever fallen into the trap of seeing the perfect housewife on Instagram and wondering what she knows that you don't?   You know - the thin, stylishly-dressed, fully made-up woman with hair that would make Jennifer Aniston green with envy?  She has an expansive, gorgeously-decorated, perpetually-tidy home where she prepares nutritious meals from scratch daily and feeds them to her cherubic children who never test her patience with fighting and defiance?  You know the one.  Actually, there are thousands out there if you look.  

But hopefully you know it's not reality.  We all have our problems.  As a mom/sister blogger, I can see both sides of this coin.  I can testify that balancing an honest portrayal while not defaming your loved ones is a fine line to walk.  I'm glad my mom didn't have social media when I was growing up - I would have been mortified!  Heck, I'm glad I didn't have social media growing up because I would undoubtedly CRINGE at 13 year-old me flailing around in Tik Tok videos.  Can you imagine the horror?!  

So with that in mind, I try really hard to never disparage anyone in my family.  The unintended side effect of that is a perception that you only see the good parts.  Let me tell you right now:  no one is perfect.  My house gets messy, my kids fight, my sister drives me nuts, and I lose my mind now and again.  I just generally don't stop and film these things.  Do you?  

What  confounds me, and maybe testifies to my age which is far closer to "Get off of my lawn" than it is to Tik Tok dance trends, is the sheer lack of boundaries on social media.  Oversharing and demanding personal information from others seems perfectly acceptable as long as it's behind a screen.  If you wouldn't approach the stranger behind you in line at the grocery store and say it, is it acceptable to say it to someone you've never met on the Internet?  

I've shied away from Facebook, but I appreciate Instagram as a quick and easy way to store memories.  Our account is public.  We're very fortunate to have a warm and supportive group of virtual friends who encourage us and keep things 99.9% positive on Instagram.  But I'd be lying to you if I said that I've never been tempted to delete the account and disappear into anonymity thanks to the other 0.1%  During the past year, I found it beneficial to moderate my media intake (social and otherwise) so I could get some perspective without all the "noise."

When fellow special needs advocates succumb to the negativity bias and tell me they want to throw in the towel, I remind them of the impact we can have just by posting photos and captions.  The positive messages I have received from people throughout the years have been so moving.  I feel grateful for a platform that allows us to upload snippets of our lives so that others can get a non-clinical view of life with Down syndrome and how it truly impacts a family.  Blogger and Instagram have been  beneficial in allowing us to advocate and share our journey, in the hopes of creating a more positive perception of Down syndrome.  Ideally, Josie and Leanne will experience more acceptance in the future because our family (along with many others) are allowing people a chance to get to virtually "know" someone with Down syndrome, and bias that stems from ignorance can be alleviated and replaced by a genuine appreciation for the joy Leanne and Josie bring to our lives.  

And that's why I'm here.  

Top Down Syndrome Blogs Award

 We have been honored as one of Twinkl's "Top Down Syndrome Blogs" for 2021 and we are elated!  Twinkl is an educational resource website and you know that we're big on educational resources around here.  In fact, I already had a Twinkl membership and I have used Twinkl's worksheets to teach various concepts to my children.  That made this recognition even more meaningful for us.  

Confessions of the Chromosomally Enhanced doesn't get updated as frequently as we'd like, but we are still so proud of the eleven years of stories, experience, lessons, and resources that we've shared.  Thank you to everyone who has joined us on this learning journey.  And thank you to Declan Lockheed and the Twinkl family for including special needs in your outreach, and for compiling this list to help connect all of us who are trying to pave a brighter future for our loved ones with Down syndrome.

World Down Syndrome Day 2021

 March 21st is World Down Syndrome Day.  Down syndrome is characterized by three copies of the 21st chromosome.  3/21 - get it?  

I was welcomed into the world by a big sister with Down syndrome.  I credit her as the single most influential person in my life.  She had such a positive influence on me, that ten (almost 11!) years ago, my husband and I decided to start our family by adopting a baby with Down syndrome.  We now all live together under one roof and it is a blessing to see these two interact daily.  They enrich our lives with their authenticity, candor, humor, and an abundant outpouring of love.  

Today was Leanne's first day back in her Eucharistic Minister role at church.  She's now fully vaccinated and ready to serve God and her fellow parishioners.  It was the perfect way to start our World Down Syndrome Day.  I know our mom is watching her from heaven with so much pride.  

I wish everyone in the world were lucky enough to have an individual with Down syndrome in their lives.  It's part of the reason we share our lives on the blog and on Instagram.  Because knowing Josie and Leanne offers a beautiful reason to celebrate this holiday. 

Happy World Down Syndrome Day!

Merry Christmas 2020

 Was it the best year ever?  Certainly not.  But there's still a lot of love to celebrate.  

Merry Christmas!

2020 Christmas Card Reveal

 As 2020 winds to a close (thank HEAVENS!), and we reflect back on the unprecedented times that we experienced, it's absolutely overwhelming.  It's the kind of thing we'll undoubtedly tell our grandkids about as they gaze at us, eyes wide with curiosity and bewilderment.  

I remember the initial terror - my neighbor bringing me an item, wrapped in a Clorox wipe, and setting it down 10 feet away from me because neither party was sure that the other wasn't contaminated with a lethal virus.  Fearful parents warning small children not to get close to their friends because it may make us sick.  Blasting out texts to neighbors that "The Walmart on Lincoln Ave. has toilet paper!  Hurry!"  Oh and that hand sanitizer that smelled like cheap tequila mixed with vinegar that we were eagerly dousing our hands in because GERMS!

It's been an emotional roller coaster with no end in sight.  One minute, you feel like you're facing doomsday...then you relax a bit...then, you hear of a Covid case taking the life of someone your age or younger and the panic starts all over again.  We cancelled vacations and birthday parties (I had a GOOD one planned for Josie), postponed visits with loved ones, and waved at Santa from the safety of our enclosed car.  We worked from home, attempted to homeschool, and took walks but did not play on park equipment.  I remember a guy offering to take my cart from me after I unloaded my groceries into my trunk, and I felt equal parts flabbergasted and flattered "He doesn't think I'm a contaminated germ factory?!  He wants to touch something I've touched without bleaching it down first?!  What in the world?!?!'  It would behoove me to write down some of these moments that stand out in my mind as I hope they become a piece of history - something that we can shove out of our minds until our grandchildren ask us to reminisce.  

This year, even more than in years past, I felt ample reason to drop holiday cards from the priority list.  Honestly, 2020 has became an adequate excuse to dodge just about any activity you may have otherwise felt obligated to partake in, right, Josie?  

Furthermore, in perfect accordance with the Murphy's Law that is 2020, my expensive camera lens rolled off the table and broke.  As if the cost of the repair wasn't enough punishment for me, "Covid delays" mean that it won't be returned for weeks...certainly not in time for Christmas cards.  So that's it - I gave up.

But then, I considered how everyone feels especially isolated and lonely this year.  If there ever was a year to try and send a little cheer in the form of a cute holiday card, it's 2020; even if the image was lacking the vibrant and crisp touch of the DSLR camera.  Then, Merryn politely implored me to maintain this tradition with the most eager anticipation, assuring me that if I said "yes," she would handle the bulk mailing all on her own.  

As with years past, it was important to try and add elements of creativity and humor into the card (See years past here, here, and here).  And because 2020 is so anomalous, and because eliciting smiles is so desperately needed this year, it was important to commemorate this somber year with comedy and levity.  Remarkably, it came together with ease and despite the subpar cell phone-quality photo, it turned out to be one of the most well-received cards we've done.  Without further ado, the 2020 Christmas card reveal:

And just like that, I had a tiny grief trigger, realizing that my mom wouldn't read this post (or maybe she will - who knows?).  She would have loved this card.  She always pressured  *ahem* enthusiastically encouraged us in the pursuit of the perfect holiday card. She would have approved.  

Wishing you a happy and healthy holiday season and extra prosperity in the new year!

December Update

 The other day, I was in Target picking up some essentials and I walked past an older woman talking on her phone.  She had it on speaker and she told the female voice on the other end of the line "I love you" before she hung up. Just like that, grief sucker punched me in the gut and I had to duck behind a display and collect myself.  Two years later, I'm reminded of the void left by my mom.  It's those little things that don't even faze you at the time - a brief phone call ending in a declaration of love, as every phone call did - they leave a gaping hole.

Isn't that the theme of 2020?  Everything we took for granted in the past is now poignantly missed.  

An email arrived in my inbox from one of mom's friends; she was seeking an update.  The update is that we're doing quite well, all things considered.  May was quite traumatic with Leanne's choking incident, and we've had many subsequent appointments, tests, procedures, and feeding therapy to try and get to the root cause of the issue and to improve matters.  After Leanne's recent esophageal manometry showed very little muscle motility and pressure in her lower esophagus, and given the backdrop of her esophageal atresia surgery during infancy, the dilations, scar tissue, and imaging they have to date, the GI doctor made a referral to Mayo.  In the meantime, Leanne still struggles to eat slowly and carefully so we're erring on the side of softer foods to keep her safe.  A consequence of her condition is weight loss and we're actively trying to boost her calories to prevent further weight loss. 

While the aforementioned circumstances have been stressful, Leanne continues to demonstrate an enviable resiliency!  She maintains a positive outlook and she rejoices in the smallest victories.  Her daily commitment to faith and prayer are inspiring.  She prays for an end to Coronavirus.  She is desperate to return to her daily activities of work, volunteering, and socializing.  

The pandemic has devastated so many families and our hearts go out to everyone who is struggling. The kids deserve to be commended for how well they've adapted to disruptions in school and other activities.  A certain carefree childhood innocence is purloined in having to explain the gravity of the situation to them.   As parents, we have tried to brainstorm ways to safely have adventures (fishing, anyone?).  

The girls were rightfully disappointed when we postponed plans to unite with Travis' family for Thanksgiving.  With Christmas around the corner, sitting on Santa's lap has been replaced by a drive-by wave to Santa.  But when it comes right down to it, we are grateful for our health and I believe hindsight will illuminate the creative ways we adapted and made the most of this unprecedented time.  

We still have Christmas cookies and Hallmark movies and car rides through the neighborhood to look at Christmas lights.  Not to mention a whole lot of family togetherness, which, during its finer moments enhances our bond, and during its challenging moments, builds character (trying to be positive here - ha!).  

As par for the cursed course of 2020, my DSLR camera lens rolled off the table and had to be sent off for expensive repairs.  The last photos taken with the camera appear on this blog post and leave me in eager anticipation of our reunion with the refurbished lens.  File that under #YouDontKnowWhatYouHaveUntilItsGone.  My New Years Resolution will be to print, frame, and display more photos of these precious faces. 

 

With the holiday season among us, we wish you all peace, hope, love, and health.  Stay safe!