Monday, April 25, 2016

Essential Down Syndrome Podcasts

I had the pleasure of attending the National Down Syndrome Congress Convention last summer (you can read about that HERE) and while I was there, I acquired a new Down syndrome sibling idol, Dr. Kishore Vellody.  Dr. Vellody is the Medical Director of the Children's Down Syndrome Center at the Children's Hospital of Pittsburgh at UPMC.  He also has a brother with Down syndrome.  Are they the sweetest, or what?!
Dr. Vellody spoke at one of the adult sibling seminars I attended and I was so impressed with his knowledge and delivery; he was relatable on a level that can only come when one truly has the personal experience with Down syndrome that Dr. Vellody has.  So I was very excited to discover a FREE series of Down Syndrome Podcasts hosted by Dr. Vellody.

Here's a confession for you:  This was my first encounter with podcasts.  I literally had to have Travis show me how to find them on my phone.  Yeah, I know, I know.  It's 2016.  Get with it, already.  But even podcast newbies like myself should totally check it out because they are brief (10 minute-ish) talk radio style segments discussing so many issues pertaining to Down syndrome.  Everything from heart surgery to constipation to sleep apena to behavior to puberty/sexuality issues to special needs trusts...and MORE!  All ages are covered.  Experts are brought in to offer very specific insight on each topic.

The first podcast I listened to was the one on potty training and it was a game changer for me.  Do you ever wonder why your child is supposedly potty trained at school but not at home?  Dr. Vellody explained that it's because the school parades the children to the bathroom on a schedule and that little ones with Down syndrome usually require schedule training/prompts.  Self initiation doesn't happen until much later for our chromosomally enhanced kiddos.  That was a major lightbulb moment for me.  Josie is very much schedule trained and now I realize that's "normal."  Leanne uses the restroom without being prompted so I know that someday, Josie will, too.  But it just takes a little longer to get to that point.  Thank you, Dr. Vellody. 

This afternoon, while walking Josie to preschool, I listened to a podcast about Sinusitis - an issue we just discussed with our ENT on Friday, as Josie has been battling chronic congestion all winter.  It was helpful to hear that it's not uncommon in Down syndrome and to listen to the factors that contribute to sinus issues and to learn about the available treatment options.  

We always like to share any helpful resource we discover and this one is something that many people who love someone with an extra chromosome can benefit from.  We give it a big thumbs up!
For more information on these essential Down syndrome podcasts, click HERE or HERE.

Sunday, April 24, 2016

Redeeming a Bad Mom Day

The other day I received a message from an Instagram follower asking me for advice on how I maintain my patience and positive parenting.  The timing was ironic because just that morning, I had sent Travis and email venting about how, as a mother, you lose yourself feeling like a servant for everyone else and that sometimes I feel like my sole purpose in life is to load and unload the dishwasher and do laundry - over and over and over...I was definitely having a less-than-positive moment where I felt lonely, isolated, and overwhelmed.  Suffice to say, I think all mothers have those days.  And often, that is not the side we show on social media because 1.  When my house is a wreck and my child is being defiant and we're running late and I'm on the verge of tears, I generally don't stop to take a photo and post it to Instagram.  2.  The blog/Instagram are the tools I use to document the moments I want to remember.  No sense in preserving the moments I'd rather forget.  3.  Because my children will someday be able to access anything I publish online, I try to be mindful not to write anything that will make them feel like they were a burden.  It's a fine line between keeping it real and keeping the big picture in mind.
But that particular day, I was truly proud of myself because I turned my day around.  How?  I uploaded the photos off of my camera - something I hadn't done in 3 weeks.  Seriously, I used to rush straight to the computer after taking photos so I could see what I came up with because it would bring me such joy.  Somehow, in the chaos of life, I'd just stuck my camera back in the cabinet and forgotten about it.  It was just a little thing but taking the time to do it really reset my perspective in a positive direction.  The question from the Instagram follower challenged me to think about "mom tips" that help me on hard days.

1.  Do Something For You - Motherhood is frequently a sacrificial state.  That's just the reality of it.  But it's amazing how recharging our own batteries in small ways can lead to a better day.  I love writing and taking pictures but I don't always have the time or energy to delve into those pursuits.  One thing I do when I'm starting to feel myself getting stressed is to listen to my own music.  It's kind of funny but as soon as we get in the car, the girls start yelling out song requests.  Generally, I'm happy to oblige.  But some days when I'm in a foul mood, I don't want to listen to Taylor Swift for the 8 millionth time and I tell the girls "Today, we are going to listen to Mommy's music on the way to school."  They may grumble but they accept it.  And it makes me feel a little better.  
2.  Wake Up An Hour Before Everyone - My day always goes better when I've had a chance to drink my coffee in peace, shower, and slap on a little makeup before having to face the demands of motherhood.  Sometimes the idea of getting up early is outrageously unappealing but I always feel better when I do it.  
3.  Focus on What You do Well - I'm not very good at cooking.  It's incredibly stressful for me to try and focus on a reading a recipe, measuring, keeping track of timing, managing multiple burners, and setting the table while my children are executing every single attention seeking ploy they can fathom to try and derail my Martha Stewart ambitions.  So, many nights, I choose to give my children a sandwich and some sliced cucumbers with ranch dip rather than ending up in tears, slumped against the cabinet, drinking wine straight from the bottle while the smoke alarm goes off.  So I stink at cooking, but I'm pretty good at cleaning and keeping the place relatively tidy.  That's the domestic talent I chose to focus on (most days).  Likewise, I'm not creative.  I don't throw Pinterest-worthy parties. I don't make Pinterest-worthy crafts.  But I sit at the table and color with my kids.  We do puzzles and worksheets and we play educational games.  I focus on what I can do.

4.  Go Easy on Yourself - Generally, having an hour to myself before the kids wake up makes me happy.  Having a tidy house makes me happy.  But some days, these things just don't happen.  That's okay.  There's always tomorrow.  
5.  Seek Support and Wisdom From Other Mothers You Respect - My friend, Aleksandra, has two daughters in college and they are the most lovely, poised, intelligent, kind, and well-mannered girls.  Aleksandra is someone I have on speed dial when I need parenting advice.  She always offers exemplary wisdom or she just talks me down from the ledge.  Either way, it's invaluable.  You can't Google that kind of support.  In addition to Aleksandra, I have many other mom friends who are currently in the trenches with small kids and the solidarity we have is often what gets me through the day.  
6.  Find Someone Whose Disposition You Admire and Try to Channel Those Qualities - As us neurotic, type A, frustrated perfectionists tend to do, I get tangled up in the details of the gap between my image of the ideal, and the reality.  I frequently take things to extremes.  One minute, I'm being sassed by a small child and the next thing I know, I'm desperately trying to formulate a plan to keep her out of the juvenile detention center because if she acts this way now, imagine what sort of trouble she'll be at 15!  That's when I think about Travis.  I assure you, for every one thing he worries about, I worry about a thousand.  He's just super laid back.  He doesn't worry.  He doesn't stress.  He's incredibly composed.  Always.  When I get caught up in stressing about Josie's delays, he reminds me of how far she's come and he helps me snap out of it.  He doesn't lose sleep over anything.  I always tell him, in my next life, I want to come back as him.  
7,  Try to Maintain Perspective - This is where it helps to have a mom, mother-in-law, friend, or neighbor with grown kids.  When it's 8am and you're already counting down the minutes to bedtime, they are the people who can remind you that while the days are long, the years are short.  You can read more about this on an old post titled, "Getting Through the Hard Days" .  I also find Pinterest quotes on Motherhood really inspiring - sometimes I even slap them on photos of my own kids.  I especially love Brian Andreas quotes.  And another writer whose motherly wisdom I enjoy is Jen Hatmaker.  Check her out on her blog or read my personal favorite article of hers HERE.  
The bottom line is that I don't know what I'm doing anymore than anyone else does.  We all have our good days and our bad days with this parenting thing.  But I try to keep things positive because I love these funny little people who interrupt every conversation I attempt to have, keep me with an endless supply of laundry and dishes to do, and heck, they even watch me pee.  And when I think about the day that I can run to the grocery store, purchase ingredients, bring them home, and cook in peaceful solitude, that makes me kind of sad. So most of the time, I try to enjoy the chaos and laugh at the ridiculousness of it all.   

Monday, March 28, 2016

Josie's 6th Birthday

Six years!  Would you believe we've been blessed by this little wonder for six years now?!  
The song accompanying the customary birthday slide show is one of her current favorites: "I met a girl" by Sam Hunt.  It's even more special in light of the fact that Travis created custom lyrics for Josie.  He started singing over the song on a recent road trip and I was roaring with laughter and incredibly impressed by his creativity.  If I could have talked him into singing it for the world, I would have.  Something about "I met a girl with velcro shoes and pink glasses..." It mentioned singing animals and seated dancing and all of the signature elements we love about Josie.

Josie, you illuminate our days with your smile and affection.  Our lives are enriched by your perspective on the world.  You are the most joyous of blessings and we are so grateful to celebrate six years with you.  Happy Birthday!

Sunday, March 27, 2016

Happy Easter from Leanne and Merryn

brthday girl

fror herl leanne love



Sunday, March 20, 2016

World Down Syndrome Day 2016: Opportunity Abounds

3/21 is World Down Syndrome Day (chosen for the trisomy of the 21st chromosome).  It's a global campaign to raise awareness about what Down syndrome is, what life with Down syndrome is like, and the important roles people with Down syndrome play in our lives and in our communities.

I truly believe that Josie is growing up in a world with more respect, acceptance, and opportunities.  Today's youth are receiving more chances to get to know individuals with Down syndrome through inclusion efforts in educational and social settings and in this process, they are relieved of the ignorance that results from a lack of exposure.  Instead, this generation of children will gain an appreciation for the idea that different is beautiful and the diversity of the human condition is something to embrace and celebrate.

And because today's generation will have an opportunity to learn from Josie, when they are tomorrow's employers, I believe they will offer more opportunity to Josie and other individuals with special needs.  Today's youth will be raised with a more thorough understanding of the capabilities of individuals with Down syndrome and the contributions that these individuals can make.
 On World Down Syndrome Day, we'd like to highlight a couple of cool campaigns that are actively seeking to advance the perceptions of individuals with Down syndrome and to open up more opportunities for these individuals: 

 1.  Ruby's Rainbow and the 3/21 Pledge -  Ruby's Rainbow is an organization dedicated to providing opportunities for individuals with Down syndrome to pursue higher education through granting scholarships.  On March 21st, they simply ask you to 1.  Donate $21 2. Pledge to be kind and considerate of people of all abilities 3.  Ask 3 friends to do the same.  I did it and I welcome you to join me.  It's an awesome cause.  Learn more about it HERE.

2.  GiGi's Playhouse Generation G Campaign - GiGi's Playhouse asks you to draw a heart on your hand with a "G" on the inside, take a picture, and then post it on social media using the hashtag #generationG.  In doing so, you are pledging join a generation that shows acceptance and respect towards all individuals, regardless of abilities.  So if you want to be part of a generation that actively promotes these values, join us, please.

Lydia says if you find the heart with the "G" a little too understated for your tastes, wait until no one is paying attention and dig into your sister's marker collection and add more pizzazz to your hands as quickly as possible before the Crayola contraband is confiscated.

Happy World Down Syndrome Day!

Tuesday, March 15, 2016

Setting the Tone for the Relationship Between Siblings

The incredible Dr. Brian Skotko has done it again!  For those who don't know, Dr. Skotko is a Boston-based physician who specializes in Down syndrome.  His dedication to the Down syndrome community was inspired by his sister, who has Down syndrome.  For obvious reasons, he and I are sibling soulmates.  I tried telling him so at the National Down Syndrome Congress Convention but that didn't go so well (click HERE).  So I hope I'm not violating the terms of the restraining order he has on me when I tell you about his latest research (totally kidding about the restraining me, Brian!  We'll do lunch!).  

I first read about Dr. Skotko's latest research in my "Disability Scoop" email newsletter.  For those that aren't familiar with this publication, I highly recommend subscribing.  This study serves as a follow-up to three 2011 studies that are discussed under the "Living With Down Syndrome" tab at the top of this blog.
Why is the information provided so important that Dr. Skotko continues to study it?  Why do I place enough emphasis on it to allocate a blog tab to it?  Because too often, the prevailing sentiment among people with minimal exposure to Down syndrome, is that people with Down syndrome and their families experience lives full of suffering.  Dr. Skotko went directly to those individuals affected by Down syndrome and found that the experience was actually a compellingly positive one for the majority of people involved.
His most recent findings go one step further and explore the correlation between parents' attitudes towards their children with Down syndrome and the siblings attitudes towards the siblings with Down syndrome.  While the vast majority of survey respondents expressed feelings of pride and love for the family member with Down syndrome, there was a link between parents whose perspectives contained feelings of embarrassment or regret and negative sentiments being echoed by the individual's siblings.
 Skotko's survey findings made me stop and consider the influence we have, as parents, in setting the tone for the relationship between the siblings.
It calls to mind a blog post I wrote a couple of years ago addressing a question I'm frequently asked:

In an over simplified summary: Leanne is my big sister.  She's terrific.  My parents love both of us.  Leanne has Down syndrome.  It's not a secret but it's not a big deal either.  We're all different but equally worthy of love.  Any questions?  Okay, moving on...
Did my parents experience doubt/concern/stress?  Parenthood is always accompanied by doubts, concerns, and stress regardless of how many chromosomes your kids have.  It's not for the faint of heart.  But the prevailing sentiments communicated by my parents were pride, love, and joy.  
The attitude my parents conveyed about Down syndrome is that Down syndrome is a component of who Leanne is.  We don't love her because of it.  We don't love her in spite of it.  We just love her.

The tone my parents set was one of acceptance: Down syndrome did not change the course of Leanne's life.  Leanne is not the unfulfilled promise of a typically developing child.  She is an individual, created by God, gifted to our family.

Since this blog is called "Confessions of the Chromosomally Enhanced," here's a confession for you: I've a very high strung and neurotic individual.  My brain is a volcanic eruption of stress, concerns, and a desire to solve problems that are beyond my control.  But I do not worry about the dynamic between my daughters and the impact Josie's Down syndrome will have on that dynamic.  Thanks to the experience of being raised with a sibling with Down syndrome, I adopted a baby with Down syndrome feeling very confident that Josie would be a blessing to her siblings as well.  
I have no clue what I'm doing with this parenting thing in general.  Like everyone else, I'm learning as I go.  But thanks to my big sister, I have a lifetime of experience with Down syndrome and that is something I wouldn't trade for the world.  I feel fortunate that my daughters can have this experience as well.

It's powerful to look at Skotko's research, read through the questions, and realize that kids are impressionable and they take their cues from their parents.  So we, as parents, do have the ability to help influence a positive, loving, and accepting relationship between our children.

To read Dr. Skotko's entire research article, click here.

Sunday, March 13, 2016

Reflect on How Far You Have Come

Since Josie was our first child, I took for granted how much effort and energy was invested in teaching her basic skills.  When Merryn came along, I was amazed – things we worked so hard to teach Josie just came naturally to Merryn.  And Lydia seems to pick up on things even faster because she wants to do everything her big sisters do.  
It’s easy to see the contrast between the length of time each child takes to acquire a skill and to get frustrated by Josie’s delayed pace.  I have my moments I wonder if Josie will ever be able to get dressed without assistance, use the restroom without prompts, or master proper pronoun usage. 

 When I get consumed by the frustration, I stop and remind myself that I had moments when I wondered if Josie would ever eat orally.  For YEARS Josie was fed via G-tube.  In the picture below, it appears as though Josie is looking at a book with Aunt Leanne, but look closer.  Do you see the tube hanging beneath her?  She's actually "eating."
As a result of her G-tube feeds, leaving the house with Josie was not as easy as dumping some Cheerios in a zip-lock bag, grabbing a bottle, and darting out the door.  Four times a day, Josie would be perched in her highchair connected to an enteral feeding pump, receiving her nourishment through a Mic-Key button in her abdomen.  Anyone who supervised Josie had to be trained on how to program and connect the pump.  
 As a baby, Josie's wardrobe was determined based on clothes that allowed us easy access to the port in her belly.  As she got older, her wardrobe was determined based on clothes that denied Josie access to the port, because pulling out her Mic-Key button could quickly land her in the operating room having it replaced surgically.  That was a scenario we desperately wanted to avoid so Josie owned onesies in sizes "Newborn" through 4T (I bet you didn't know they came that big, did you?).  
The G-tube was such a huge part of our lives that I had days in which I couldn't envision a future without it.  Even when we embarked upon the path to end Josie's reliance on the G-tube, we had no idea how long and taxing the journey would be (you can read more about that HERE and HERE).  It was difficult.  It was discouraging.  It seemed impossible.

Now, I set food in front of Josie, just like I do with her sisters, and she manages just fine. 
We can even leave the house empty-handed because I know I can get Josie a snack from any given vending machine/gas station/drive thru and she'll eat it.  That enteral feeding pump that once ruled our lives is something that rarely crosses my mind now.  It's in the past.  We've moved on.
I remember the concern I felt when we were building a two-story house and Josie couldn’t climb stairs.  I would wake up in a complete panic with dreams of accidentally leaving the baby gate open and Josie being at the top of the steps.  Living in a two-story house meant that ascending and descending stairs was no longer a gross motor ambition; it was a safety requirement.
 We worked and we worked and we worked at it.  Josie hated every minute of it!  I worried that Josie's lack of motivation would mean that she would never acquire that skill.
 But fast forward a year and Josie descends the stairs independently every morning.  And with each step, she pauses and yells some sort of shameless self praise “Woo Hoo!  Good job smart girl!  Good job independent girl!”  Check out the videos HERE.
In parenting children, especially in parenting children with special needs, it's easy to get hung up on the deficits, gaps, and frustrations.  We're all working to raise our children to be as independent and as self-sufficient as possible and sometimes the contrast between where we are now and where we want to be is so discouraging.  That's why it's important to take a step back and recall past obstacles and to celebrate the progress that we've made.  In reflecting on the journey from "daunting challenge" to "mastered skill," we are reminded that this is, indeed, a journey.  And we are, indeed, moving forward.  Sometimes the pace is slower than we'd like, but we will get there.