Did you know that by their 60's, 50% of adults with Down syndrome will develop Alzheimer's disease (source)? Dr. Brian Skotko is a medical geneticist at Massachusetts General Hospital who is leading a clinical trial for a vaccination that would prevent the development of Alzheimer's in the Down syndrome population. According to Dr. Skotko, "Right now we believe that people with Down syndrome might have the key to unlock the mysteries of Alzheimer's for all of us. The pathology of their brains resemble Alzheimer's at an earlier age and can be studied." (source)
In July, Dr. Skotko issued a "Down Syndrome Brain Train Summer Challenge." It was an email series that included some research-based recommendations for boosting brain health in individuals with Down syndrome.
1. Socialization - Research shows that individuals with strong social connections have a lower risk for developing Alzheimers disease. Dr. Skotko challenged families to have a 5 minute long conversation with their loved one with Down syndrome every day, featuring open-ended questions.
2. Exercise - Research shows that exercise can enhance neuroplasticity and delay Alzheimer's disease. The American Heart Association recommends a minimum of 150 minutes of physical activity per week.
3. Play Memory Games - Research shows improvement that lasted for 10 years in neurotypical adults who participated in memory training. The Dollar Tree has memory match cards for - you guessed it - $1. We made our own cards featuring photos of family members.
4. Reduce Sugar Intake - Research shows that dementia risk increased dramatically with sugar intake. Children and adult females are advised to consume no more than 25 grams per day. Adult males should keep their intake at no more than 38 grams per day.
5. Improve Sleep Hygiene - Research linked Obstructive Sleep Apnea Syndrome with increased cognitive deficits in Down syndrome. Dr. Skotko recommends learning the signs of sleep apnea, having a sleep study if symptomatic, and wearing the CPAP mask as prescribed. Click here for some tips for making that happen.
To learn more on how you can help prevent Alzheimer's disease from developing in your loved one with Down syndrome, check out Dr. Brian Skotko's on demand video series "Down Syndrome Brain Train".
Summer is so crazy. It's a good crazy; you can't help but love it. We're talking camps, softball, tee ball, tae kwon do, speech therapy, occupational therapy, tutoring, "intellectual development" (because Merryn doesn't like to call hers 'tutoring'), swimming lessons, ballet...
We celebrated two major birthdays (Lydia and Leanne) and two major holidays (Father's Day and Independence Day).
To celebrate turning 5, Biddy (Lydia) had a "Princess Party" hosted by Anna and Elsa. We assumed she'd only want to invite the girls from her preschool class but she couldn't omit her beloved first crush, Edward, so it ended up being lots of kids and lots of fun.
A week later, we turned our attention to everyone's favorite aunt. Leanne had been planning her Applebee's 42nd birthday extravaganza since January. We all wore Leanne's favorite color as a tribute to her.
We were touched by how many friends and neighbors from back home sent Leanne cards and Starbucks gift cards.
Leanne's vociferous birthday planning starts six months in advance and anyone who encounters her during that period is going to hear all about it. One year, the priest even announced it at mass, per Leanne's insistence. She proudly waves her "Over the hill" flag and holds up four fingers on one hand and two on the other so everyone knows exactly how many years this earth has been blessed by her presence. But hey, when you look this good, why not tell everyone?!
Speaking of adorable faces, we had to capture this monumental smile with its conspicuous vacancy. Josie is showcasing her toothless summer grin daily and we can't get enough.
The five of us girls (Man, that seems like a lot when I see it in writing - poor Travis) enjoyed a fun-filled week at Vacation Bible School.
After her enthusiastic performances last year, Leanne has solidified a permanent spot on the music crew. It's the perfect job for her.
I fell into my role as the official VBS photographer. Every night, I was scouring the neighborhood for props that I could use the following day, assaulting my neighbors with strange texts inquiring if they had any bricks, plastic swords, googles, or pharaoh costumes I could borrow.
And Biddy Boo closed out her introduction to ballet and tap dancing with an epic performance. Travis' parents even crossed time zones to attend her recital! The costume and stage makeup made it worth all of those arduous Monday night dance classes, as far as Biddy was concerned. She shined on stage!
And that, my friends, is just a brief photo update. Daily adventures are documented on Instagram @CatfishWithKetchup. Stay tuned because we want to share some more Down syndrome specific content. Games, Flash Cards, and Social Stories - oh my!
Sunday, April 28th at 9:30am mass, Josie and Merryn both received their First Communion. But this wasn't just an event that happened on that day. A year (arguably a lifetime) of preparation went into this monumental occasion. I remember the day I got the folder revealing the date of the girls' First Communion. A lump lodged in my throat. It's primary source was grief. Of all of the moments for Mama Hop to miss...this one was a punch in the gut.
The secondary source of my anxiety resulted from Josie's history with food refusals resulting from G-tube dependency (You can read more HERE and HERE). The host doesn't exactly taste like an Olive Garden bread stick. But we had time and a wealth of wonderful clergy, staff, and volunteers to help us figure it out.
Every Wednesday night, the girls, Leanne, and I load up and head to church for Faith Formation classes. Well, the girls go to class, Leanne volunteers in the nursery, and I man my prestigious bathroom post as hall monitor. That's right, Folks: they don't let just anyone sit on a chair outside the bathrooms and bark commands like "I think that's enough soap!" "Pick up that paper towel and throw it in the trash!" and "Stop loitering and get back to class!" This is how I serve the Lord.
During Faith Formation, Josie is in class with the other second graders, aided by a wonderful associate named Brenda. Brenda is an OT by day and a loving mother of two lovely teenage girls: Allison and Nicole. These three have volunteered countless hours in our special needs ministry to help Josie and other children with special needs grow in their faith.
Josie learned the protocol quickly: Bow, "AMEN!" (perhaps the most enthusiastic one the walls of this stoic Catholic church have ever heard), and the sign of the cross. And with a little incentive like a mini Oreo, Josie even consumed the host. Hooray!!! Things were going well!
...Until one day Josie decided she was done eating that host. In fact, it was during a dress rehearsal at our home that she gagged, coughed, and spit out the unconsecrated practice host!
Just as Christ broke bread, gave it to his apostles and said, "Take this, all of you, and eat it: this is my body which will be given up for you," we celebrate communion because it nourishes God's life within us. WE DON'T SPIT JESUS OUT!
In that moment, the grief, coupled with the g-tube PTSD, compounded by the pressure of the importance of this sacrament, left me paralyzed under the weight of crushing anxiety. I spoke to our incredible special needs ministry coordinator and she encouraged me to have faith. I tried. But it was SO hard when they brought in a Board Certified Behavior Analyst who is pursuing her PhD, who pulled out all the stops, and Josie still REFUSED to consume the host.
But like I said, this was IMPORTANT. And too many beautiful souls worked too hard to facilitate Josie's faith journey to let it be betrayed over the rejection of a dry Styrofoam-tasting cracker. I asked if the priest could consecrate a Cheez It instead.
That was a negative.
So, I brought the girls home and drew from the most powerful weapon in my arsenal (besides God/faith, of course): STUBBORN. Yes, I know "stubborn" is an adjective but just go with it. Josie may have a whole extra chromosome full of STUBBORN, but Leanne does, too. And she just happened to leave a little extra in the womb for me to utilize on occasions like this. I was born for this!
So we prayed. We read Josie's First Communion social story. We practiced. A lot. And I reflected back on those long days at the feeding clinic with Josie, excavated every technique stored in the dark corners of my memory, and I went to work.
I got Josie to consume a piece of the host for me at the kitchen table using the same methods we employed to get her to learn to eat all food. But in Applied Behavioral Analysis, there's a concept called "generalization" in which a skill learned in one setting can be applied in other settings. Could we get Josie to generalize this skill?
Josie successfully practiced with her sisters. She practiced with Aunt Leanne. She practiced with two different caretakers. And then it was time to practice with the priest.
Sweet Father Ray set aside some time on Saturday morning just for Josie. Jess, the incredible special needs ministry coordinator joined us with her adorable daughter. This was the moment of truth: would Josie consume the host in the church for the priest?
She did it! And we celebrated with Oreo's.
Sunday morning, we got out of bed and adorned Josie and Merryn in their traditional First Communion gowns and veils. My dear friend, Erin, came over and fixed their hair.
They looked downright angelic. We headed off to church and met with the other first communicants, preparing to celebrate this holy sacrament. We took the customary aunt-gets-niece-in-a-headlock photo and then found our reserved seats in the pew.
That morning was one of the most difficult mornings of my life, and it wasn't just because my Spanx were squeezing the life out of me. Josie was in a foul mood. She refused to stand up, sit down, and kneel, with the rest of the parishoners during mass. She even defiantly kicked the kneeler, somehow injuring her shin, and dissolved into tears. This wasn't looking good. The cheerful, compliant Josie that had shown up to practice with the priest just the day before, was replaced by a combative little diva in a white veil perched precariously on her blond head, where Dad had awkwardly shoved in back in after the 20th time Josie had yanked it out. I knelt in the pew with my hands clasped in white-knuckled prayer.
JESUS TAKE THE WHEEL!
Communion time arrived and Merryn went first. She was beautiful. The moment was perfect. She beamed.
Then, it was Josie's turn. The special needs ministry director knelt next to the priest who held out a small piece of the host and said "Body of Christ."
Josie paused. The seconds felt like an eternity from where I stood behind her. But that's not what Jess experienced from her vantage point. She said Josie gazed at the priest, she gazed at the host, then she gazed up at Jesus on the cross. Jess said an aura of light flanked Josie's head as the silent pause was pierced by a smile and an enthusiastic "AMEN!" Josie put the host in her mouth and took off.
I took my communion, looked up, and saw Josie bolting for the exit, all the while crossing herself and faithfully saying "In the name of the father, son, and holy spirit..." I chased her down in front of a sea of amused faces and led her back to our pew. Then I cried.
The tears wouldn't stop. I cried for my mom. I cried for the weight of the pressure. I cried for the gift of faith. I cried in thanks to God.
I don't know if this is "normal" (I can't stand that word) or not, but one of my biggest emotional triggers in the wake of my mother's death has been the kindness of others. The reminders that I may be motherless but I am surrounded by loving people whose kindness humbles me beyond words.
People like my mom's friend, Gale, who sent me a birthday card and a Starbucks gift certificate, which landed me in a heap of sobs on the floor. People like my mom's childhood friend, Karen, who sent Christmas gifts for the girls, knowing my mom wouldn't be there to do it. Church members like Brenda, Nicole, Allison, and Father Ray, who have walked this sacramental journey with us. People like this phenomenal woman:
For Jess, the special needs ministry position isn't just a job; it's a calling. She has a passion for facilitating opportunities for children with special needs to experience Christ. She adapts her approach to meet each child on his or her own faith journey. I'll never forget the first time she called me an invited us to attend Faith Formation. We had just moved and I was barely getting by on the last frayed nerve I had left. I explained to her that I was utterly overwhelmed with these little ones and could not commit to one more thing. She empathized in the most beautiful way and told me she would be there when we were ready. She kept in touch and made us feel like a part of the church in a way that no one else ever has. The church is a family and the magnitude of that is amplified beyond measure when you've lost very significant members of your own family.
After mass, neighbors, friends, and complete strangers congratulated us. The benevolence was awe-inspiring. God's people were unified in His Love. Christ's light shown upon us. Mama Hop definitely joined in the celebration.
I've always had a minimalist decorating style. I'm not big on trinkets/knick knacks/tchotchkes. My home has even been referred to as "sterile" and I'm okay with that. This spills over to the exterior of our home. My friends have tried to convince me to paint our front door a fun and funky color but I won't do it. My neighbors have colorful chairs and planters on their porches. Ours is bare. I err on the side of neutral tones and "less is more."
So when Leanne came home talking about this angel she'd seen at a local garden center, I cringed a little. She said that since mom is an angel and since Saturday is her birthday, she wanted to buy it for her as a birthday gift. "Do we really buy birthday gifts for people who have passed away?" I asked. She insisted that we do, in fact, need to buy a birthday gift for mom.
I somehow convinced myself that it would be a small, flat paver with an angel carved on it and I figured we could probably hide it somewhere in a rock bed and I took her back so that she could show me.
Lo and behold, Leanne walked straight to the largest concrete angel in the display. This was not an obscure, flat paver, but rather a big, upright carving of an angel with elaborate butterfly wings, holding some sort of a bowl. I could easily picture it in a 90 year-old lady's garden but for the life of me, I couldn't imagine a way that it would fit in with the aesthetic of my home.
I suggested Leanne find a paver with a nice little quote that reminded her of mom. She refused. I pleaded for her to pick one of the smaller, daintier angels. Her response: "No. Mom was big. She needs a BIG angel." (For the record, Mama Hop was quite petite, but anyone who stands next to Leanne is "big" by comparison).
Then, I glanced at the price tag and almost lost my lunch: $110! One hundred and ten dollars for an enormous concrete angel to give to a deceased person for her birthday!
Not knowing where in the heck we were going to put this thing, I conceded, "Okay. Fine. Bring it over to the cash register so we can pay for it." She tried to lift it and made this face:
Thankfully, the nice man at the garden center wrapped it in burlap and shoved it in the back of my vehicle. When I got home, the expression on Travis' face basically echoed mine when I first laid eyes on it and he said "That is what she's been talking about all this time?" I said, "Yep." He said, "Couldn't she choose something smaller?" I said, "Apparently not." So he hauled it around the back of the house, per Leanne's directive.
She wanted it placed outside her bedroom window so that she could open her blinds and admire it daily. She showed him exactly what she had in mind and he adjusted it until it met her approval.
Then, it was time to sing:
My mom shared her birthday with her best friend's husband, Jay, and they always celebrated together. So Leanne sang to Mom and Jay. I sent the video to her best friend and he responded, "Your mom is either crying or cussing because you wasted $110. LOL!" Truer words have never been spoken. Then, Leanne knelt down and embraced the angel, whispering words of love to Mama Hop. In that moment, I knew the angel was worth every penny.
I quickly warned her that purchasing concrete monuments cannot be an ongoing birthday tradition or else my backyard will resemble a cemetery within a decade. Leanne agreed to planting flowers going forward.
She went inside to admire the view from her room and she seemed rather pleased.
Then, we added one final touch and she grinned from ear to ear...
Happy Birthday, Mama Hop.
We will continue to celebrate you and the loving memories that you left with us.
March 28th may not be a national holiday but it's a VERY special occasion at our house. It's the day we celebrate Josie's entrance into the world. It's hard to believe that we've been celebrating that day for nine years now. Our sweet and sassy little JoJo is growing up quickly and her maturity is becoming more and more apparent all the time.
My mom always said that the first eight years are the most difficult with Down syndrome. She assured me that after that, health problems would start to subside and maturity would start to kick in and we'd be hitting our stride. Well, I've seen evidence of that already. Josie handled her winter health battles (Influenza A and walking pneumonia) without oxygen and hospitalization. Her chronic runny nose was not nearly as bad this year. And what I like to call her "get it quotient" is on the rise. She is coming up with new things constantly that demonstrate that she's tuned in and understanding more.
Yesterday, Josie was celebrated both at home and at school. Her sweet second grade teacher sent me precious photos of Josie passing out cupcakes to her classmates. Josie came home with a backpack full of notes containing sweet birthday wishes from her friends. After school, we headed straight to the Mexican restaurant that Josie chose and we had dinner together.
Upon arriving home, YaYa and Papa called us on Facetime so that they could join in the celebration from their home in another state. Isn't technology wonderful?!
When we asked Josie what she wanted for her birthday, she offered only one response: cake! Girlfriend loves cake so Mama happily paid a visit to our local Dairy Queen and got Josie a delicious ice cream cake.
Josie also loves being serenaded; perhaps as much as she loves cake. Her face just lights up when we sing to her!
Several years ago, Josie reached out and touched the lit candle on her birthday cake and mildly burned herself. Merryn was more traumatized than Josie was. Ever since, Merryn keeps a snug embrace on Josie whenever she's in the presence of lit candles. That's why we call her "Mother Hen."
The close monitoring of an overprotective little sister is superfluous in light of Josie's aforementioned "get it quotient;" she knew exactly what to do!
She took a deep breath and blew hard until each and every candle was extinguished!
The next photo is a little blurry but the expression of exhilaration on Josie's face is too contagious not to share.
We got started opening gifts. YaYa and Papa gave Josie some snap together letters so that she can practice both fine motor skills and spelling (and activity that she loves and excels in).
Leanne selected a singing hen from Hallmark that sings "It's springtime and I know it" to the tune of LMFAO's "Sexy and I know it" while laying eggs. Josie became instantly obsessed. Way to go, Aunt Leanne!
There were more fun and educational gifts to come thanks to Mom's Lakeshore Learning haul. We can't wait to dive in and explore!
Special thanks to everyone who offered up birthday wishes to Josie via social media. We're glad that you appreciate watching her grow into the feisty and independent little girl who makes us so proud.
Down syndrome is a condition characterized by a third copy of the 21st chromosome so it only makes sense that on the 21st day of the 3rd month of the year, we celebrate World Down Syndrome Day. It is a global day of awareness, observed by the United Nations. It's a day in which we celebrate our loved ones with Down syndrome. We advocate for their rights to education, healthcare, and inclusion.
Today (and every day) we celebrate Leanne and Josie and the profound impact that they have had on our lives. They have enriched our world with sincerity and love. They have taught us valuable lessons far beyond what we can learn in school. They have made us better people and for that, we are eternally grateful.
