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.