Down Syndrome Archives - Enjoying the Small Things

Down Syndrome: Where We Are Now

October 3, 2018 By Kelle

October is Down Syndrome Awareness Month when thousands of families across the globe advocate for the people they love and educate friends on what it is they want them to know about Down syndrome. What I want you all to know has hopefully been woven into every single thing I’ve shared online for the past eight years–yes, in posts specifically about Down syndrome, but more so in what I’ve shared that isn’t–the celebrations, the holidays, the family trips, the everyday stories of hustling kids out the door, attacking neglected piles of laundry, attending to work, exploring hobbies, raising a family and filling in the gaps with the sweet simple pleasures that make life grand. Hopefully through all of that, you’ve read between the lines this subtle yet screaming message–that Nella fits perfectly in this family and that having a child with Down syndrome is not an experience to be pitied, but a joy that very much fits the profile of the American Happy Family dream, especially when you understand what happiness really means.

I have learned that no one is entitled to being part of the 699 in a 1-in-700 odds, and that becoming the “1” can sometimes be a golden ticket to a secret only other ticket holders know. That secret did not reveal itself to me the day Nella was born because I had a lot of fear and expectations of what my family was supposed to look like to chisel through (I skipped the chisel and went for the bulldozer–we had a lot of digging to do), but it came. And here we are.

When Nella was a baby and her diagnosis was still fresh, one of the editors who interviewed me pursuing the possibility of publishing Bloom admitted she saw a memoir about raising a child with Down syndrome more of a compilation of many years, perhaps written when Nella was ten or older and looking back at the lessons we learned over a longer course of time. She wrote again after Bloom was published, shared the sweetest congratulatory words and commented on how she realized the importance of sharing just the first year–because it was hard and raw in the moment and might have been sorted out as no big deal written with the hindsight after ten years. And she’s right. I’m glad I wrote that book when I did because we need first year books for first year moms. We need all the details of grief and acceptance because the process is complex. I wouldn’t be able to tap into those feelings today because mostly Down syndrome is no big deal, and that’s what I’m getting to…that Where We Are Now, 8 ½ years in, is exactly where the other ticket holders told me I’d be when she was born–infinitely happy that we were chosen to be her family. There’s a good chance if we would have waited for an 8-year memoir that I would have turned in a manuscript only to have my editor call me with, “I thought this was going to be about your journey with Down syndrome? I’m confused–you wrote a lot about holidays and celebrations.”

Of course, I don’t want to trivialize the challenges of raising a child with special needs. Let’s just get this out of the way: parenting is harrrrrrrddddd. And parenting a child with Down syndrome does, of course, come with added commitment, especially in laying the groundwork for a fulfilling future and finding resources for that. But it’s a commitment much like marriage. We know marriage gets harder as we get older, and yet people choose life partners every day because we know that love is fulfilling, we know that committing to the challenges makes us grow, and we know that spending life together with someone you love is one of the greatest joys man can ever know.

It is that joy that makes this journey rich. Nella’s presence in our family brings an acute awareness of all that is good in the world–her love for others, what it feels like to celebrate an accomplishment for someone who worked so hard to get there, her laughter, her dancing, her willingness to try things even though they don’t come easy, her radical acceptance of everyone she meets. Nella is a mirror for our family. Every day we see before us the very bones of our existence–what makes a person beautiful, separated from the chaff of the things we mistakenly get caught up in that we think make us impressive–our GPAs, the colleges we went to, our jobs, our promotions, our age-defying bodies, our bank accounts, our accolades, our wardrobes, our home decor, our social media followings. Nella helps guide the standard of purpose in our home and reminds us what’s worth celebrating, and we will always have that. Last weekend, our neighbors stopped by to chat, not intending to stay long. We leaned against counters and talked about our week in a messy kitchen with plans to get back to our cleaning and weekend to-do list when we were done. The lights turned off suddenly in the middle of it though, and we turned to see Nella, smiling in the darkness, as she plugged two disco lights into the outlet on the kitchen island and commanded, “Dance.” She led the celebration that eventually turned into a Conga line as we snaked around tables, laughing and wiping away sweat from our impromptu weekend cardio. Nella yelled for Alexa to play the songs that are perfect for dancing, and we moved our hips through those flashing rainbow lights until we crashed in bed that night. That is what is buried in the golden ticket. That is what I want you to know.

Since it’s Down Syndrome Awareness Month, I’ll tell you a little bit more about where we are now. The answers to these questions change with time, but this is the 8-year-old stop on the journey for us.

Academically
We are working patiently on continued reading and math strategies. Nella can read basic level books with sight words she recognizes and is beginning to show great progress in phonetically deciphering words and writing them. She is in a typical second grade classroom where the community of students love her, support her and cheer for her. She also receives more individualized instruction in a special education classroom. This year, during a presentation about Down syndrome that we request her class receives (she was not present), a little boy wanted to know more about her other classroom. Her wonderful special education teacher invited them all on a field trip to that classroom where they learned more about her instruction there, saw her name on her other desk, celebrated her work taped to the wall. One little boy exclaimed, “Nella’s so lucky. She gets two classrooms.” Slow and steady progress is okay, and we celebrate consistent forward movement and social growth, communicating with her team and committing to the specific learning goals we created together. Learning often comes in peaks and plateaus–things will seem slow and steady for months and then BOOM–everyone will be e-mailing that she’s having a crazy amazing few weeks of vocabulary leaps, social breakthroughs and overall accelerated pace in reaching her goals. Our hope is that Nella will be able to attend one of the many college programs in the country for people with intellectual disabilities someday. If not, that’s okay too, but knowing these programs are available helps give us something to shoot for. We just want Nella to have as many learning opportunities as possible–ones that help prepare her for independent living, teach her important skills she can use for a job someday and mostly, ones that enrich her life, quench her thirst for knowledge and give her a great sense of community. We don’t intend she’ll take her wand to college, but don’t break it to her yet.

Nella’s awareness of her disability
Once Nella was in school and we knew she’d have more opportunities to naturally compare her abilities with others, we made a conscious decision to talk about Down syndrome with her at a basic level, mainly with the purpose of her understanding there was a great reason why she wasn’t able to complete the same work and shifting our perspective to celebration. One way we help achieve that is introducing her to other kids that have Down syndrome, pointing Down syndrome out when we see kids who have it in advertising or on T.V. and getting all excited as a family with her for the fact that she has this awesome little thing that makes her unique. While she doesn’t articulately communicate that she understands what it means to have Down syndrome, I know she’s aware of it in the same way other kids are aware that they have short or long hair, brown or tan skin or were adopted at birth. She knows it takes her a little longer to learn things, but given the resources she has and the incredible people at school that are privileged to work with her because of it, I think she’s okay with it. One of our biggest areas of advocacy for Nella is making sure her awareness of her disability is always equivalent with celebration, self love and capability.

Something we’ve celebrated lately…
Nella is beginning to own her voice in a crowd. Her teachers have reported that she’s being more vocal in her classrooms, sharing answers out loud among peers. Last week, in an after school musical production class she’s taking, I peered around the corner to spy and was shocked when Nella agreed to participate in a song game where she says her name out loud to the group and everyone sings back to her.

A mantra I live by in raising a child with Down syndrome…
Just today. Yes, a lot of what we do with Nella subconsciously incorporates our hopes for her future, but all that is every required of us at one time is today. We don’t have to have it all figured out. We wake up every morning and be the very best parents we can be to all of our kids, just today. I’m also motivated by the mantra, “If Nella shows up, so can you.” She faces more challenges because of her disability than most kids and yet she shows up every day–walks in her classroom, pencils in her worksheets, listens to her teachers, sits in the group even though she might not understand everything, talks to friends on the playground, pushes through her shyness, tries things again when she’s previously failed. Knowing that keeps my flame burning when I’m running and want to quit, when I want to back down from something that scares me, when I’m feeling tired or unmotivated or burnt out by naysayers. If my daughter can do it, so can I.

A worry for the future…
I won’t deny that we are in a beautiful window right now. Our kids are all still in our home, Dash and Nella’s favorite companion is each other, our school feels close and homey and shares our visions of inclusion, support and high standards for Nella. Sometimes I worry for the other shoe to drop. I also worry about our job industry drastically changing in the next ten years with computers taking over so many of the kinds of jobs that Nella will be able to do. Here’s where the kryptonite to my worries lies though…creativity. I believe in the creativity of good people and know that it solves problems. I trust my own creativity and know that my love for my daughter will keep me fighting to fit a square peg in a round hole until death us do part. Astronauts brought Apollo 13 home. We got this.

A dream for the future…
A house for me and Brett with a little carriage house (with twinkle lights–duh) in the back where Nella can live independently someday, maybe even with someone she loves. We will check up on her and she will, of course, roll her eyes and complain about her overbearing mother. Friday game nights at our house. Siblings who visit her often and beg for her to come be with their families because The World’s Best Aunt makes every home better. A job she loves, whatever that may be. Good friends she can socialize with. Catching her eye when she’s 40 years old and being able to spiritually connect with her like I’ve done since the day she was born…”I’m happy,” those eyes will tell me.

One thing friends do that is so helpful on this journey…
Request playdates. More than anything right now, as her awareness of second grade social lives develops, I want Nella to know she has friends. Heidi does this more than anyone, and her commitment to always making sure Nella has a vibrant social life makes me love her even more. Once, when Heidi found out that Nella was sad after Lainey went off to a sleepover with friends, she called me and said, “I’m already in the car. I’m coming to get Nella. My kids are all excited. Pack a bag, it’s a sleepover, tell her her presence is requested for a party. A big party.”

My stomach lurches when I…
…hear the word retarded. From the moment she was born, I’ll bet I’ve noticed every. single. time. it was said in my presence, and I wince…for Nella. No matter how you use it or choose to define it, no matter what you feel about politically correct terminology, no matter how many “friends with disabilities” you have…the use of the word embodies shame for people who don’t learn as quickly. It’s hurtful, and carelessly throwing out that word when there are a number of different words to express what you really mean to say is ignorant, lazy and makes a distinct statement about your level of compassion.

Want in on some golden ticket secrets?
In the past, people with Down syndrome have been patronizingly generalized to one personality–precious angels, always happy, who exude love. I’ll get to the love part in a moment because–yes, there’s a lot of love; but I think it’s first so very important that people understand individuals with Down syndrome are complex individuals with varying interests and abilities. They’re funny and witty and love particular books and movies and restaurants just like you, and they get pissed off at the same kind of things that piss you off. They develop crushes, fall in love and break up. They drink beer, celebrate accomplishments with champagne toasts, and develop awareness for what constitutes appropriate drinking. I have a friend in AA who recently revealed one of his AA meeting buddies is a girl with Down syndrome. She leads the group occasionally and has found great community in helping others face their addiction. Perhaps that’s not something to be celebrated, but I admit I cheer a little every time I discover something someone with Down syndrome does that people would normally think their disability limits them from, even if it’s attend AA meetings. Full inclusion. So to generalize people with Down syndrome as sweet and loving and happy is to trivialize their real dynamic personalities. We are living in a new age of awareness. We’re seeing models with Down syndrome included in regular advertising for everything from children’s toys to women’s bras (Yay, Aerie!) and reading headlines about young adults with Down syndrome launching business ventures, graduating college and starting movements. I want you to know that Nella is funny, understands jokes, does her homework, gets mad at her brother, defends her territory, organizes her siblings’ belongings by the door before we run out to school (seriously, she keeps my head on straight), problem solves sometimes better than everyone else in the family; and now that I’ve told you that, let me tell you about her love. It isn’t cute or precious and is far above what can be summarized in a syruply-uttered, “Those kids with Down syndrome–they’re so loving.” Her love is spiritual and connected to the deepest parts of people that need to be seen. She knows things. She knows people’s feelings–can sense when they’re hurting. She will try and fix it.

A few weeks ago, I got sick after a long run without water or proper food fuel. I ran to the bathroom and curled over the toilet to throw up, shooing everyone away and assuring them I was fine. Everyone ran but Nella. She stayed in the bathroom with me, pulling my hair aside, rubbing my back, whispering “It’s okay, Mommy. It’s okay.” She brought me a towel, stroked my hair like a mother, held my hand and waited for me to finish. The depth of her awareness and her desire to love me through that little moment brought me to tears.

“You just tired?” she asked. “You want water? You’re okay, Mommy. You’re okay.”

This is just a little bit of the behind-the-scenes magic that we experience every day. We pour love on our children with no expectation of affection back, and yet the boomerang effect of our nurturing is fierce with this one. Sometimes I fall asleep with her stroking my face, listening to her whisper, “I love you, Mommy.”

So if you’re still reading after all that…that’s where we are now. We feel pretty damn lucky.

Happy Down Syndrome Awareness Month. Thank you for celebrating with us.

8 Things I’ve Learned from Having a Child with Down Syndrome

March 20, 2018 By Kelle

Tomorrow is World Down Syndrome Day, a day globally recognized (and officially observed by the United Nations) to raise awareness and celebrate individuals with Down syndrome and chosen on the 21st of the third month to represent three copies of the 21st chromosome. We cannot imagine life without Nella, and although we weren’t expecting that extra chromosome with her arrival eight years ago, we’ve learned so much about ourselves, the world around us and what really matters in life because of its presence in our family. In celebrating the lives of these incredible individuals on World Down Syndrome Day this year, here are 8 Things I’ve Learned from Having a Child With Down Syndrome.

#1: Life is hard. Just accept that.
So much of my devastation receiving Nella’s diagnosis was due to the fact that I got swept up in how comfortable and according-to-plan life was going that I expected it to stay on that path. We are not entitled to a life free of challenges, and clinging to a dream of ideal/easy/comfortable sets us up for incredible disappointment when the inevitable unexpected happens. In those first weeks after Nella was born, I read the words of Scott Peck and actually felt relieved—like I was given permission to stop fighting/grieving/analyzing what had happened and just accept that it was part of life. “Life is difficult,” he wrote. “Once we truly know that life is difficult—once we truly understand and accept it—then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” When I dream of the future now, I try to focus less on specifics I can’t control and more on the greater picture: I expect a life of love and fullness, and when I encounter the hard unexpected things in life, I will overcome them and use what I’ve learned to be better.

#2: Down syndrome isn’t what makes life hard.
Now that #1 is out of the way, here’s a surprise: That big life-changing diagnosis we thought would make life hard? Turns out the harder things in life have had little or nothing to do with Down syndrome. As for the future, we cannot be sad or stressed about a chapter that hasn’t even been written yet. And when it comes time to write that chapter, we will be ready. The tenth chapter of a math book looks entirely overwhelming on the first day of school, but when you arrive at it when you’re supposed to—after you’ve completed chapters 1 through 9—it’s just another math lesson.

#3: Love the child you were given.
Having Nella has helped me understand this more deeply for all of my kids. Our children will surprise us numerous times in their lives, both in ways that make us feel happy and proud and in ways that hurt and are hard to grasp (don’t worry—we did the same to our parents). But the child you get is the child you get. They might not like the sports you like or the clothes you pick out. They might not learn to read as fast as you did or take an interest in ballet like you had hoped. They might vote differently than you someday or join causes you don’t support. But we are going to have to let go of all of that, because we only have one job…to love them. More than anything, our children need overwhelming, no-strings-attached love as the unshakable foundation on which they will build and rebuild their experiences.

#4: There’s more to communication than words.
“What if I can’t understand my child?” is an overwhelming fear when, as a parent, you want nothing more than to deeply know your child and meet her needs. While Nella can speak very well now, her vocabulary developed at a slower rate, and her communication is different than her peers. Through these past eight years, we’ve understood more how words are only a small part of communication. I have only felt the most intimate connection with Nella through her touch, her expressions, her behaviors, her humor, her tone and her heart. Her messages are intentional and meaningful, and we listen well when she communicates. And the best part? I’ve sharpened these communication skills and recognize and use them with people wherever I go now.

#5: Enough of the metrics!
At seven months, your baby should be combining syllables. Near 12 months, your baby will likely be practicing taking a few steps. Your toddler should be gripping a crayon now. Your kindergartener should know these sight words. Your third grader should pass this test. Your fifth grader should ace that test. Your high schooler should have this GPA. ENOUGH OF THE MARKERS AND METRICS FOR MEASURING A CHILD’S SUCCESS! Having Nella and celebrating the different ways and pace at which she learns has inspired us to let go of numbers, tests and comparisons for all of our kids and instead applaud interest, effort and expression. We put less weight on report cards and test data and focus more on communication with our teachers and evidence that shows our children are exploring the world, making art, pursuing interests, utilizing resources, fostering connections and contributing their unique gifts. Numbers can sometimes be a helpful tool to point out what our kids need, but will never be used to represent my children’s potential and value.

#6: Be a microphone for those whose voice needs more volume.
Having a daughter who is part of a group of people that have been marginalized in society for years has made me more aware of how I can use my voice and my vote for groups of people who don’t have the same opportunities as I do. Our family is more attentive to the needs of others. more sensitive in recognizing inequality and more motivated to support those who have to fight harder for things. Advocacy brings purpose to our lives and a greater connection in our community. Find causes to represent, find people to support, find friends who are marching for something and show up with a poster to march with them. You will be better for it. In the great words of Martin Luther King, Jr., “Life’s most persistent and urgent question is, ‘What are you doing for others?”

#7: YES YOU CAN.
My child works harder than anyone to accomplish things when the decks are stacked against her, and she proves again and again that she can do things that were once considered impossible accomplishments for kids with Down syndrome. This community is hearty and headstrong, and our advocate ancestors paved the road by refuting a whole lot of “Can’t”s with “Watch me”s. I’ve had lunch with a woman with Down syndrome who had just received her driver’s license, helped organize a dorm space for another who settled into college, and sipped wine with a mom who complained her son with Down syndrome never calls her anymore because he’s too busy socializing with his friends–all things that were unthinkable for people with Down syndrome 30 years ago. My daughter’s quality of life has drastically been made better because of three simple words: “Yes. She. Can.” Bonus: It works for moms too. Ever see a mom in a tough parenting situation and said to yourself, “I could never do that”? She probably thought that once too, and yet she’s doing it. Yes you can.

#8: Enjoy the Moment.
More than anything, raising a child with Down syndrome has taught me to sit back and enjoy the moments. So much of parenting is spent anticipating the next phase: When will he start walking? When will she write her name? When can I sign him up to play soccer? Each phase is quickly followed by another so that cherished moments flash by in a blur, and we often recognize how wonderful they were only once they are gone. We discovered early on that many of Nella’s phases last longer than usual. She didn’t walk until she was two, so we didn’t stress about the milestone and rather used her delay as an opportunity to sit back and soak up the smooshy baby phase–so many days of her snuggled in our arms or her head pressed against our chest all nestled in the baby carrier. And learning to read now? It’s so beautiful to watch it slowly unfold, and our entire family gets to be part of it, pulling out sight words games at dinner, pointing out letter sounds on signs, celebrating new word recognition with family cheers and clapping. Time has slowed down for the very best things in life, giving us the chance to recognize that these moments–this learning about the world–is what life’s all about, and it’s something to be savored and celebrated.

We are thrilled to celebrate unique abilities this week and are so grateful for our girl and the vibrant contribution she is making to our family, our community and this world that needs more colorful variety and compassion. If you love someone with Down syndrome and want to share what you’ve learned from them, leave a note in the comments.

Pros and Cons of College Life with Kirsta Graf

February 23, 2018 By Kelle

You know how I know it’s going to be a good day? Because my intern is taking over this space today. I’m so happy to have Kirsta Graf back here today (she’s been busy at school!) talking about some pros and cons of college life and what she’s learning. If you’re new here, Kirsta has Down syndrome and is a first year student at Bethel University as part of their BUILD program. Bethel is one of the 267 universities in this country that offers inclusive higher education programs for people with intellectual disabilities. I had the opportunity last year to travel with Ruby’s Rainbow to witness Kirsta’s family drop her off at college (you’ll get to see all this next month, and you won’t want to miss it–tear jerker!), and now I’m so thrilled to have Kirsta share about her college experience here on the blog.

As Kirsta’s mom says, “It isn’t nothing” meaning it’s not like she dropped her off at college, waved goodbye and booked a cruise for Italy. There are a number of extra challenges, both for students and parents, that come with being a part of these programs, but Kirsta, her family and the university staff are committed to facing those challenges and finding creative ways to overcome them because they know that Kirsta’s future will benefit.

Kirsta’s mom shared, “A lot of the challenges that have come up at school are things we never thought to address with Kirsta. You don’t know what she doesn’t know until you find out that she doesn’t know it, if you know what I mean”–which is true of any child, but sometimes with intellectual disabilities, some of the secondary lessons you expect kids to pick up without having to literally lay them out need to be specified.

The wonderful thing about Kirsta’s college experience is that these life lessons are bubbling to the surface, giving everyone the opportunity to live through and learn them together, and the product is beautiful growth–sometimes in baby steps, sometimes in noticeable leaps. I’ve visited four colleges that offer these programs now, and I am so impressed with the staff that make them come to life. Expectations are high, and while all the resources these students need are provided, it can be challenging for parents to remove themselves as one of those resources to help their kids lean on the other ones they’re encouraged to use. Ultimate goal? More independence.

One of my favorite phone calls from Kirsta’s mom last year was when she called to tell me that Kirsta spent her monthly coffee shop budget in one week.

“Alicia,” I told her, “This is awesome. This means her college experience is just like everyone else’s because you do realize, thousands of other college freshman called their parents this year asking for more money because they were broke after the first week.”

And my favorite thing to hear about is how Kirsta, her family, peers and college staff work together to come up with creative strategies and accommodations to learn these lessons. I’ve tucked away many ideas, written things down and have been so encouraged by the lessons Kirsta is sharing. I know that we too will face these challenges in the future, and we will overcome them.

Today, Kirsta is sharing some pros and cons of college life and some of the things she’s learning.

Take it away Kirsta.

COLLEGE LESSONS I’VE LEARNED

Lesson 1:

College life is great because I get to go to a coffee shop called Royal Grounds a lot. I like to get Turtle Mocha or a Chai Tea or a Pumpkin Latte. BUT…
…sometimes I buy too much fancy coffee and I’m getting in trouble. I’ve had three in one day!

Lesson 2:

I love having fun and kind roommates. I have awesome girls on first floor Nelson Dorm! BUT…
…I missed my home and mom and dad and sisters. They miss me too, but they’re ok.

Lesson 3:

It’s awesome to climb a ladder into my cozy built-in bunk bed with a curtain. BUT…
it’s not fun to get the stomach flu away from home and throw up all over your bed (not so cozy then).

* Kirsta’s mom said she never thought about teaching Kirsta how to take care of herself when she’s sick, so they learned so many lessons this year!

Lesson 4:

I am proud because I have learned to do a Google calendar and I am good at it. I add things like, “Clean your glasses.” (my mom makes me.) BUT…
…sometimes I don’t check the Google calendar and I miss fun nighttime activities, like a Target run or a movie. And I have to clean my glasses!

Lesson 5:

It’ pretty cool that I get to make my own choices about a lot of things I want to do. My mom and dad could not tell me (ha!) BUT…
I had to learn to get up and be on time to class on my own. That’s been going ok. Now I’m an early bird. I always make it to breakfast.

Lesson 6:

My favorite is hanging out with friends from high school that go to Bethel. Especially “the guys”. BUT…
Learning to keep in my own space as a roommate is hard sometimes when you’ve had your own room.

Lesson 7:

It is helpful that my teachers really care and try to help me with my studies and learning to be independent. BUT…
My teachers don’t mess around. If we do something wrong or against the rules they are honest and we have consequences.

Lesson 8:

I had to do finals in my classes. I could Facetime my mom and dad and family if I was worried about finals, and I did fine. My sisters came to help me study too. BUT…
I was very nervous about finals. And I had a lot of tears about them. I sent A LOT of texts that said, “I’m nerves about finils.”

Lesson 9:

I live in a cool suite where I can watch movies and we have a coffee maker too. BUT…
It’s not my favorite to clean our room. We have to empty trash and vacuum and clean the bathrooms.

Lesson 10:

I love chapel and vespers and all the kind, loving, understanding students that Bethel has. AND…
I’m learning that I need also to be growing in love and kindness and thinking of others, not just myself.

I’m so grateful to have Kirsta in this space and can’t wait to share more of her journey with you. If you missed her first post, you can find it here. And it is my great pleasure to send Kirsta a check for every post she writes here. You can find out more about colleges that offer programs for people with intellectual disabilities at thinkcollege.net and more about Ruby’s Rainbow scholarship opportunities for people with Down syndrome here. Kirsta reads your feedback, and your words are encouraging and helpful. Tell us–what lessons do you remember learning in college and what challenges were particularly difficult?