Caregiver Self-Care and Support

 I used to tell my mom that she should have had ten kids.  She was so maternal and she absolutely lived to take care of others.  I did not inherit this gene.  And now that I'm Leanne's caretaker, I realize that God knew what He was doing when He gave Leanne to my mom: she's the equivalent of ten kids!  Ha!  I'm teasing...a little.  But in all honesty, Leanne's presence in our home has opened my eyes to a whole new perspective: Caregiver.  

The caregiver role can manifest from many different scenarios: parenthood, caring for an aging/elderly parent, caring for a sick spouse, and on an on...For me, personally, the distinction came when Leanne moved in.  It changed everything.  My children were already established in a routine.  Our family of five was a well-oiled machine.  Enter Leanne: it was a crash course in legal guardianship, Medicaid waivers (and wait lists), healthcare specialties (PCP, Urologist, Psychologist, Audiologist, ENT, GI, etc.), employment opportunities, volunteer opportunities, day programs, fitness programs, socialization opportunities, transportation, scheduling...

In a way, it was a welcome distraction from my shock and grief over my mom's illness and passing.  I did not have time to wallow; I had so much to figure out.  Add a couple of health scares and a global pandemic, and I quickly familiarized myself with the notion of "caregiver fatigue." 

Recently, the National Down Syndrome Society approached me and asked me to do an Instagram Takeover in honor of National Family Caregiver Month.  This organization, who does so much for the Down syndrome community, wanted to put a spotlight on caregivers.  We were honored to be a part of it.  That process was the catalyst to thinking about my caregiving journey.  Beyond that, the feedback we received from other caregivers inspired this blog post.

Confession time: It took me two years after my mom's death and Leanne joining our household to recognize that I was not navigating my caregiver role properly and to make the necessary changes to proceed in a healthier way.  It was so much easier to focus on taking care of others - particularly Leanne.  This gives way to burn out.  And when the caregiver is depleted, everyone who depends on that caregiver suffers.  Here are some things that I found beneficial in helping me fortify myself, so I could offer better care to others: 

1.  Diet and Exercise - I became consumed with helping ensure Leanne had nutritious food per Dr. Brian Skotko's recommendations, as well as access to fun fitness opportunities at a special needs gym. When Leanne had her choking incident and several procedures to expand her esophagus, I took her to feeding therapy and pureed everything that I set in front of her.  All the while, I wasn't the least bit concerned with my diet or fitness routine.  Shame on me.  When I decided that changes had to be made, I truly reaped the benefits of weight loss and feeling better by simply consuming more lean proteins and vegetables and watching my carb consumption.  I spent time grocery shopping and meal prepping food for MYSELF.  That didn't take away from the meals I planned for the family - it just factored myself and my well being into the process.  

2. Alcohol/Drugs - Another big component of my lifestyle overhaul involved giving up alcohol.  What started as a health/weight loss effort, turned into a larger conviction once I started researching alcohol's effect on the human body.  I used to truly believe that Type A, neurotic perfectionists like myself  genuinely benefitted from the relaxation effects of alcohol.  What I learned is that alcohol was actually increasing my anxiety and sleep disturbances.  I haven't had a drink in more than a year, and at this juncture in my life, abstaining is the best decision for me.  If you're curious to read more, I highly recommend the book "Alcohol Explained" by William Porter.  And if you're more of a podcast/YouTube person, check out Annie Grace.  And while I would welcome anyone to look into the benefits of reducing alcohol intake, I would also encourage people who are under great stress to discuss phamaceutical interventions with their physician.  In much the same way a diabetic requires insulin to manage blood sugar, our psychological health can benefit greatly from the right prescription drug; even if it's just to help us make it through a temporary period of emotional duress.  

3.  Outdoor time - I read books on this, too, but I'll spare you the boring details.  For me, I think that being in my house is a constant reminder of the chores I have to do: laundry, cleaning, sorting through the mail, tending to the plants, organizing closets...the list never ends.  When I'm in my car (which is much of my day), I'm reminded of the jam packed schedule and time constrains resulting from transporting four people to appointments and activities.  But when I'm outdoors, be it on a walk, gardening, or even taking my kids to the pool, my brain can truly be free of the chorus of responsibilities and truly just enjoy relaxing in nature.

4.  Hobbies - I laugh as I type that word, because busy moms don't have time for hobbies!  And yet, our mental health can benefit so much from unplugging with something that has nothing to do with providing care.  I discovered handlettering last winter and it became a compulsion for me.  I would use my kids' Crayola watercolor paints to make abstract designs on paper, and then I would handletter inspirational quotes on my paintings after my kids were in bed.  I am not an artist and the vast majority of my projects were ugly disasters.  But that's not the point; it was a therapeutic process for me.  Likewise, I used to think that time spent reading was wasted unless I was reading nonfiction and learning something new in the process.  However, over the summer, I took my kids to the library a lot.  And I would pick up one or two silly fiction books to read on our pool days.  Talk about a fun, mindless escape.  It greatly helped me relax.  

5.  Time out - it's not just for kids.  When I feel myself starting to get overwhelmed and irritable, I will withdraw to my bedroom, shut the door, and enjoy a "time out."  Guess what - none of my kids have ever suffered injury during one of my time outs.  My house has never burned down during a time out.  The world functions just fine without me for a few minutes. 

 

Likewise, sometimes it can be overwhelming having five people talking over one another, demanding my attention all day.  I am an extrovert but even I crave solitude.  I have found it beneficial to wake up before the rest of my family so I can enjoy my coffee in peace and brace myself for the day ahead.  I don't set an alarm; my body naturally rises early.  And I truly enjoy that time of day when my house is perfectly silent.

6.  Seek Out Sources of Inspiration and Faith - My mom's illness and death were awful.  She needed me and my kids needed me and my sister needed me - I felt like I was being pulled in so many different directions and no matter who I chose to tend to, it resulted in guilt because I was neglecting someone else. The stress was so great that I wanted to crumble, but I couldn't.  By listening to psychologist Dr. Jordan Peterson's lectures on YouTube, I learned that voluntarily assuming a challenge resulted in a more positive emotional state than the defensive posturing system associated from fearfully bracing for catastrophe.  I derievd a lot of pride from the fact that I survived that period in my life.  It was awful, but I did it, and I'm stronger for having done it.

Since my mom's passing, I have found that turning to faith can offer strength, comfort, and enlightenment.  I'm fortunate to have many tremendous faith role models, and I find that the more time I spend within my religious community, the more I receive comfort in God's message.  At a recent faith formation gathering, another parishoner shared a story about how he lost his mother at a very young age.  In listening to him tell his story, I felt a whole new level of healing in my grief journey.  This year, I'd like to grow in faith even more.

7.  Help Someone Else - This may sound counterintuitive that you need to seek out someone else to help when you're already drained from caregiving, but hear me out...Sometimes emotionally extracting myself from my own situation and investing in acts of service towards others really reframes my mindset.  In the Prayer of St. Francis, it says "For it is in giving that we receive."  And sometimes that intrinsic boost that comes from acting in service to another person is just the tonic required to transition from feeling depleted to feeling fulfilled.  

8.  Ask for help - This particular point generated so much feedback from caregivers on Instagram.  My experience has been that when things become overwhelming, I know I need to move heaven and earth to build a support system.  We have never lived in the same state as our family, and therefore Travis and I have always had to find outside care providers.  During the pandemic, Leanne's activities were obliterated and she was stuck at home day in and day out.  Her mental health decline became very apparent.  She was withdrawn, agitated, and lost.  We tried virtual talk therapy and Leanne's communication challenges made it ineffective.  My breaking point came over the summer when Travis was out of town (when one element is out of place, Leanne usually struggles) and her negative attention-seeking behaviors were keeping everyone awake at night and had me really questioning how much more I could take.  I ended up going on NextDoor, care.com and even contacting the church to try and find someone who could help.  Leanne needed to get out of the house.  She needed activities and attention beyond what I could provide.  My kids needed a mother who wasn't sleep deprived and short fused.  And I needed a break, too.  

It took awhile, and it cost some money, but we finally found a care provider who could take Leanne out of the house for 18 hours a week and transport her to community engagements including Special Olympics, fitness, volunteering, and other recreational activities.  This has made an enormous difference for Leanne and for myself.  

Many parents are hesitant to trust anyone else to provide care for their children, and I understand that.  However, as the dependent individual reaches adulthood, we have to learn to let go.  Leanne is in the community for work and I cannot supervise her there.  She relies on special needs transportation services and I cannot supervise her there.  If she attended a day program, I would not be able to hire and supervise every staff member.  And if she lived in a group home - forget it!  I have found that it is worth the time and effort to search for the right care provider, and to train that person, for the peace of mind that comes from having a break from the 24/7 demands of care.  Furthermore, your loved one's life may be greatly enhanced by forming a  relationship with someone other than yourself.  

If you have a friend or family member who is a caregiver, please volunteer - insist - on picking up (or staying with) the individual who needs care so the caregiver can have a break.  Some individuals thrive on consistency so maybe you could commit to a regular weekend schedule - a 2 hour outing every Sunday.  I assure you that this is one of the most beneficial things you can do to show your support to a caregiver. 

9.  Build a Tribe - There is an immense relief in venting to someone who "gets it."  In recent years, I watched a relative become a caretaker to his wife when she was diagnosed with dementia.  He found an Alzheimer's Support Group and he attended the meetings faithfully.  Now that she's gone, he attends a grief support group.  Likewise, I have made numerous friends who have children and siblings with Down syndrome.  Some of my closest "Ds Community Friends" have been found thanks to social media.  It's remarkable how many commonalities unite us, even though we're all over the globe.  There's something reassuring in being able to exchange stories and ideas with people who can relate.  

10.  Humor - Anyone who has followed our journey for awhile is aware that my number one coping mechanism is humor.  God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the sense of humor to laugh at this nuthouse I live in.  My mom used to call me frequently with funny Leanne stories.  Now, I document the #LeanneHollywood stories on Instagram.  If nothing else, we have an endless supply of inside jokes beccause there's always something to giggle about around here.  

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!