Am I Doing It Right?: Special Needs and Siblings

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In the far corner of the girls’ room, there’s a heap of Barbies–15 of them maybe–most of them naked, their hair a tangled mess. Nella sits cross-legged beside them, picking two at a time to “talk to each other,” a practice we’re very familiar with now that involves shaking of the Barbie who is speaking (“Wanna go to Target? Let’s go! We can get coffee.“) followed by shaking of the Barbie who responds (“Oh yeah, Target. I love Target.“). It is her happy place–imaginative play that can keep her busy for hours–but a space she guards, many times chiding anyone who tries to join her in play. I know the holler well now, an agitated “Nooooooo!” followed by a defeated sibling who leaves the room–or, in Dash’s case, high-tails it, laughing, with a kidnapped Barbie he purposely stole and ran off with just to piss her off. For Lainey, the defeat has been harder to accept, another communication barrier in a relationship she wants so badly and one we passionately attempt to foster and celebrate–close-knit siblings. Do all siblings protect their toys and ward off any who dare get in their space? Of course. But in Nella’s case, interactive play with siblings and engaging communication that helps deepen sibling bonds is definitely more of a challenge and one that’s become more recognizable this year, especially between her and Lainey. It requires our family’s attention and support in creatively nurturing what we know is there–loyalty and a love so deep, you can’t even describe it. I see it in the way they look at each other, and it still catches me off guard at times and makes me cry.

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I started to compile some ideas and things that have worked for us in cultivating close sibling relationships and addressing some of the specific needs we face with special needs and siblings, but it takes a village, and so much of what we are learning comes from sharing this journey with other families. So, I reached out to some of my mom friends in the special needs community who also have large families and asked for some sibling stories to add to this post, and I love what they contributed.

As with raising kids in general, recognizing and meeting your kids’ needs is a constant process that changes with time. Spreading attention across a family and meeting unique demands of each child is a balance act. Sometimes we do things the wrong way a few times before figuring out the right way. Sometimes we’re trying our very best and giving it all we got, and it still doesn’t seem enough. These are some things that have been helpful to our family in addressing sibling relationships, and some from my favorite mamas who make this journey a whole lot easier. I hope you find them helpful too.

Meaningful Interaction and Engaging Play Might Need Training Wheels

I try and keep an eye out for attempts at play that don’t go over well, especially between Lainey and Nella (I keep referring to Lainey and Nella because Dash and Nella, for the most part, play together pretty good on their own) and intervene a bit when I can to help them along. For instance, yesterday Lainey tried to play Barbies with Nella, but Nella stayed in her own little world, uninterested in including Lainey. Lainey came to me, frustrated. “I wish she’d play with me. I keep trying, but she won’t let me.”

“I have an idea,” I told her, remembering a new Barbie I picked up on clearance that I was saving for Nella’s birthday. I pulled the new blue-haired Barbie from my closet shelf and gave it to Lainey. “Why don’t you be the one to give this to her. I bet she’ll be really excited to play with it.” I watched as Lainey lit up, taking the Barbie and running to give it to her sister, and smiled listening to Nella’s overjoyed reaction. The new blue-haired Barbie joined the circle and my sister girls played together for a solid half hour.

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While new toys aren’t always the answer, sometimes a creative little nudge is needed. That can be as simple as jumping in to model play, making a shared activity look exciting or sometimes, giving direction to Nella and explaining to her that when she doesn’t let people play with her, it hurts their feelings. When I find activities that work well in creating bonding moments between my kids, I invest them. Another that works really well for all three of my kids is grocery store. All I have to do is pull out our play cash register, a few paper bags for bagging groceries and line up a bunch of canned goods across the living room, and all the kids come running to play. I can walk away and let them take over and, without fail, they will all interact and take turns being the cashier and the shoppers.

Beware of Treating Your Child With Special Needs as the “Darling of the Family.”

This can be tough in families with kids with special needs because extra attention often happens whether you like it or not. When we are out and about, people often go out of their way to say hi to Nella or to tell us she’s beautiful, and I love the gesture, but I love even more when they make a point to give the same attention to Lainey and Dash if they’re with us. At home, we do our best to expect the same out of all our kids. As my friend Katie put it, “Grace (who has Down syndrome) is required to do everything that everyone else does. She gets in trouble just like the boys do, and if she doesn’t, they call me out on it. We have tried to not treat her any different than any “baby” of the family is treated. ” My friend Liz who founded Ruby’s Rainbow–an organization that gives scholarships to people with Down syndrome–in honor of her daughter Ruby, expressed the challenge of making sure her other daughter feels just as celebrated. “I often feel like I need to work on being certain that Ella Mae feels just as special and important to us as Ruby,” she told me. “Ella asked me once, ‘Will we ever have an Ella’s Rainbow?’ and oh, my mama’s heart just broke a little at the thought of her not feeling important enough to have her own organization!”

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“My first thought was, ‘Holy shitballs! I have to start another organization!’ but I have since reconsidered. Not that isn’t an option–we would want to foster any kind of endeavor Ella would want to put out into the world to make it a better place–but instead we have been working on her starting her own business, something she loves and something that is hers. We have a few ideas we have played around with and have really invited her involvement, talking about what it would entail, how to start it, etc. So this summer she will open up “Ella Mae’s Play and Stay”, a dog sitting business. She LOVES all living creatures, but super-duper loves dogs, and we have a huge back yard and lots of love to give, so we are going to let her take the reigns and go for it.”

See why I love my friends? Liz’s heart, man. I love her so much.

For me, I’m always looking for little ways to let my kids know how unique and special they are, and while Down syndrome does bring some extra attention to Nella, it also brings opportunities for our other two to shine their unique gifts. Bloom might be the story of Nella’s first year, but it was important for me to dedicate the book to Lainey to let her know how important her role is in our story too. Her example of love without limits and pure acceptance of her sister at the ripe age of two is what paved the way for mine. This story is all of ours because we are family, and we belong to each other. Each of us offers a valued part in this unique journey we are lucky to experience, and communicating that truth to my family is so important.

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I love this tip from my friend Heather, whose daughter Morgan is a teenager now:

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Help Siblings Understand the Importance of Modeling Good Behavior and Ignoring Bad Behavior.

“For some reason this just didn’t click with Morgan’s older brothers.  It didn’t matter how many times we asked them to not laugh or repeat inappropriate things, they still did it.  They couldn’t understand how this only reinforced the negative behavior, and even though it was funny when she would accuse people by saying “You farted!” at 6 years old, it just isn’t funny anymore at 14 years old; but it’s a habit she can’t break.  Teach siblings that some things that are easy for them to outgrew or change are not so easy for someone with DS.  It can take years and many times, never go away after it has been reinforced.”

One thing I’ve learned a lot lately is…

Recognize Kids Will Be Kids. Make Room for Normal Sibling Reactions (Like Embarrassment or Frustration)

Now that Lainey and Nella go to the same school, there are more opportunities for Nella’s needs and/or differences to be on display. For the most part, she fits right in and everyone loves her. But there have been a couple of incidences where she’s drawn some attention (ahem…not getting off the playground when she’s supposed to), and Lainey’s class happened to be walking by during one of these times. Lainey got pretty upset about the whole situation and expressed it one evening in tears and some free expression about some other challanges we face, and I wish I could go back and respond differently. I blew it that night. My instincts to advocate for Nella got out of balance, and I let them overshadow my more important responsibility to mother all of my children, one of whom really needed me to listen and validate her very real feelings that night. I said some things that suggested her reaction wasn’t compassionate and went on to lecture her about how much harder Nella has to work and what challenges she has to overcome. Basically, I shamed her for feeling the way she did. Instead of validating and helping her deal with her feelings, I told her her feelings were wrong. I’ve since apologized for my overbearing reaction and have realized what a gift it is that my daughter felt free to communicate with me that night. I know having a sister with Down syndrome might present some unique challenges for her over the years, and I want to know all about those challenges and be a safe place for her to talk about them. If I take her reaching out as an invitation to launch a lecture, she might quit telling me and face them alone, and that’s the worse thing that can happen. Communication and understanding is what keeps this family together and strong. I remember a mom visiting me in the hospital after Nella was born and sharing some wonderful advice that’s stuck. She has four daughters, one of whom has autism and is non-verbal. “Sometimes my girls get embarrassed when their sister makes loud noises or acts in a certain way around their friends, and I make room for that. Of course I know they love her and would do anything for her, but they’re still kids.” We’ve all been embarrassed by our siblings or disappointed by things they do. I want to approach all sibling conversations regarding Down syndrome with the foundation of “I know how much you love Nella. I’m proud of the advocate you are. Now, talk to me. Tell me anything, and I will listen.” Create opportunities to listen to siblings and communicate often–let them vent, say anything, NO SHAME. (And be kind to yourself–I’m sure the conversation I had with Lainey isn’t the last time I’ll say the wrong thing, and I’m okay with that. We make up for it in love. 😮)

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Involve Siblings in Advocacy

The best way to truly understand something and become passionate about it is to find opportunities to teach and share with others. Allowing siblings to be part of advocacy–helping to raise funds, walking in Buddy Walks, telling their friends about it, helping with therapies, etc.–gives them the satisfaction of ownership. Down syndrome isn’t just “Nella’s thing.” It’s a part of our world, a part of our community, a part of our family, and how lucky we are to know so much about it so that we can help others know about it too. I love to talk to Lainey about things we do to advocate, share blog posts with her, tell her about Ruby’s Rainbow trips, ask her if she has any ideas, invite her to cheer with us when we are watching 3-21 Pledge donations come in, etc. And she is well aware that Nella needs extra time and help learning things and loves to be a big part of Nella’s learning team–helping her with guided reading books, practicing writing with her, playing counting games, etc. Liz from Ruby’s Rainbow adds, “We try and let Ella Mae take some ownership in Ruby’s Rainbow. We show her all the videos of the recipients to really let her see who we work so hard to help. And when we involve her in helping Ruby with homework or therapy, it’s not just about Ruby. She takes more pride in the accomplishments of her sister knowing she helped her get there.”

My friend Heather’s daughter Morgan has a sister who is 18 months older and, as Heather says, “She has always been her biggest advocate. She always set up the DS Awareness classroom presentations with her teachers without me knowing because she wanted her friends to understand Down syndrome and accept and love Morgan like she does.  When she was in 6th grade all of the students in her classroom were given an assignment with the topic “I have a dream.”  Hadley wrote about her dream of International Down Syndrome Acceptance and that everyone would be given the perspective of seeing those with Down syndrome the same way she did as she looked at her baby sister.  She had a dream that there would be no more  newborn babies being abandoned by their parents in orphanages out of ignorance and fear of the unknown.  I had no idea she had written about this topic until I received this email from her teacher: ‘A lot of times, students her age are focused on what they can get out of something.  But to me, I can see Hadley doing things and learning things not only for herself, but so that she can help all she comes in contact with.  You have an amazing daughter and I truly feel it a privilege to work with her.’ When parents worry and question how a child with special needs will affect their other children, this message from my daughter’s teacher says it all. They will learn to find beauty and acceptance for all people.  They will stand out as a person who focuses on others needs more than their own.  They will have a desire to help those around them.  When they are 11 years old they may dream of a more loving and accepting world for their brother or sister because they can’t imagine how someone could not see the same beauty and light that they see. And just for fun: When Morgan’s little sister was about 5 years old we took a neighborhood friend with us to a playdate with some other DS siblings her age.  When we got in the car to go home, she asked her friend (without a DS sibling) if she had a brother or sister with Down syndrome.  Her friend asked, “What does that mean?” and Mia responded, “Down syndrome means they rip your favorite drawings and kick or push you when they walk past you.”  It’s not always easy to have a sibling with Down syndrome.  Siblings learn patience and compassion at a younger age.  They learn that sometimes things happen that may seem spiteful or mean but really it was because their brother or sister lacks impulse control and not because they want to make their sibling sad.  This understanding requires patience, love, forgiveness and understanding.  All qualities that we want our children to learn and understand.”

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Remember Your Other Children Have Special Needs Too

My friend Lisa adopted Archie from Bulgaria when her daughter Ace was three. “Ace and Archie have always had an incredibly strong and unique bond,” Lisa explains. “She has been fiercely protective over him since the day he came home. She was instantly a little mama bear. But it quickly became too much and she developed anxiety. She constantly worried about Archie and whether he was okay. She worried about him feeling sad or left out. She needed to know where he was at all times. We had daily talks with her about how she was just a kid and didn’t need to worry about Archie or take care of him, that that was our job. We made sure she knew we were proud of her for what an amazing sister she was and that we loved how much she loved him, but that we didn’t want her to worry about him so much. Those talks did not help.

As the years went on, the anxiety continued, and even grew. When she was at school, if he was late to the carpool line, or she didn’t see him with his class, she would have a little panic attack and I would get a call from the counselor. We continued to talk to her about it, walking a fine line between desperately wanting to take away those anxious feelings, and feeling a need to allow her to be the protective sister that she was clearly born to be.

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 I decided it was important to get their school on the same page and really understanding her issues. So between the principals, counselor, and their teachers, everyone knew how to handle it. For instance if Archie was going to be at speech while the rest of his class was at lunch when Ace would normally see them, the teachers would let her know ahead of time. If he was going to be working late on something and wouldn’t be at the carpool line at the usual time, someone would let her know.
What I realized was that she has needs just like Archie. Clearly they are different from his and they aren’t as obvious, but they are real. And far from trivial. I realized that us telling her that she didn’t need to worry about him wasn’t going to ever change a thing. Once we had everyone on board and really understanding her anxiety, it started to get better. We have endless conversations about the same things over and over. It can get tiresome, but it eases her mind so we continue to have them. Since the very first day of school this year, she’s been anxious about next year when he goes to middle. Almost daily, we discuss the path of the next few years. “So I will be without him for two years, then we will be back together for one…. then what again?”
And we will continue to answer her million questions, and reassure her as often and for as long as she needs.”

Remember You Don’t Have to Have All the Answers Right Now…The Kids Will Be Alright

 When Nella was born, thinking about what kind of relationship she’d have with siblings and how Down syndrome would affect their lives completely overwhelmed me. In almost seven years though, I can tell you that everything I worried about has turned out to be either non-existent or easily managed situations. Are there challenges? Yes. But we take one day at time. We’ve managed to get from Day 1 to Year 7 just fine; we’ll manage to get through the rest, with resources, with love.
Every family has their thing. This is ours. I like our thing. And I have a feeling Lainey and Dash will too. I’ve talked to a lot of adults who have siblings with special needs–some of whom have more stories of challenges than others, but the bottom line is always…they wouldn’t change their situation for the world.

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I know how lucky my kids are to have the opportunity of a life course that isn’t available to everyone–one that will teach them things about compassion, commitment and capabilities that will equip them all to be better contributors to their communities.

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No matter where Lainey and Dash go in life, they have the admiration and love of a sister who thinks they can do no wrong.

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And whatever Nella chooses to do in life, she has a family of cheerleaders who support her and believe in her. The most valuable resource we have? Each other.

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We will continue to find ways for these kids to make memories together, problem solve together, play together, help each other, celebrate each other and store the love they have for each other into a reserve that will fuel them for all of life’s hardest moments. They are each in their own way the best thing that ever happened to each other.

The kids will be alright.

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Dream Planning and Future Opportunities for Special Needs

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This post is sponsored by Daymark Living.

I grew up in a family of people who pray. While those prayers were rooted in deep faith and accompanied with a history of tradition and church, the premise of the prayers were to let our thoughts be known–to speak our gratitude out loud and to unleash the deepest desires of our heart and give them wings; transform them from hidden thoughts to something bigger–spoken words empowered with the belief that what we asked could be granted. I remember countless prayers for babies, my grandpa adding “our grandchild on the way” to the line-up of other grandkids’ names in his prayers before they were even born. Intentions for these little lives were spoken out loud: “Please give them health, protect them, let them grow up to be kind,” and later continued into more specific prayers: “Let her find the right college, please help him do well on his test, keep him safe on this trip.”

I believe in the power of making our wishes known and unleashing dreams into spoken words. In parenting, it’s often what saves us from worrying too much but also what fuels us for the future and excites us for what’s possible. We talk about dreams as our children pull stethoscopes from their plastic doctor kits and we hint, “Maybe you’ll be a doctor someday!” Or when they swaddle their dolls and we tell them, “You’re going to make the best mama.”

When Nella was born, it took me a little while to figure out what those prayers look like–how to speak dreams out loud. I’d watch her gently nestle babies into her arms, patting them softly, and go to say, “You’re going to make the best mama someday” but stop myself, knowing it was highly unlikely.

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I believe in dreaming big and “nothing’s impossible,” but I also want to be responsibly realistic. Sometimes that’s hard with Down syndrome when we understand legitimate limitations that will impact her future and yet are also living in a time when people with Down syndrome are accomplishing things they never have before.

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And so how do we dream? How do we speak intentions out loud, get excited about opportunities that will be available to her and follow a path toward real goals?

I’ve found three things that help me:

1. I focus on this: I want Nella to be happy, to contribute and to feel fulfilled in life. Period.
And what makes her happy and how she contributes or feels fulfilled might be different than what I think should fulfill her and make her happy. Brett used to love the possibility that Nella would live with us forever, and I frequently remind him, “She probably isn’t going to want to live with us.” She might want to live with other people who have Down syndrome. She might want to live alone. All I know is that whatever makes her happy and whatever she dreams of doing, we will work hard to support her in achieving that.

2. Knowledge is power.
There didn’t used to be very many options for the future. In fact institution and living at home were about it fifty years ago. But there are so many different ways to dream about the future for our kids now, thanks to new programs, opportunities and creative minds that are forging new paths. We know now that college is an option from working with Ruby’s Rainbow and that there are nearly 250 different college programs around the country for people with intellectual disabilities.

And there are new options. Daymark Living is one of them–an entire community dedicated to helping the developmentally disabled thrive.

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Daymark Living will be breaking ground soon in Waxahachie, Texas–a growing town (near Dallas/Ft. Worth) of 40,000 people that offers a historic walkable downtown, a welcoming community and something critical to people with disabilities–employment opportunities. And while Daymark Living might not be a “forever” option for many families, it can be a great fit for a specific time period and a perfect “away from home” college experience.

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Residents will increase independence while living at Daymark while having a huge support group of friends and staff along the journey. Daymark’s beautiful homes come with numerous amenities from daily resident programming and on-site healthcare to transportation into town, social events, pools, fire pits and monitored fitness rooms–all to increase quality of life and encourage greater independence and meaningful relationships.

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The Daymark Living dream started from a dad who has a son with Down syndrome and, like us, believes in the power of saying his dreams out loud. (I’m so glad he did)

Thinking about Nella’s future can sometimes be daunting, but knowing new opportunities like Daymark Living exist and clicking through their website? It gives me so much peace and direction toward realistic possibilities.

Which brings me to my third thing that helps me:

3. Plan for Greatness.
When we think about the future of our kids and plan for college and opportunities, we plan for ALL of them. Nella’s future isn’t exempt in that big dream pile for our kids. They will each find ways to fly away from the nest and experience the beauty the world offers, and we want to support all of them in their dreams.

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With that said, I have a little dream for Nella’s future. It might not be what she wants, and if that’s the case, we’ll follow her lead, but I believe in saying these dreams out loud. If just for me. I’ll throw it into the universe, like my grandpa did in those long prayers he made every single morning, pouring out the deepest desires of his heart for the grand kids he loved.

I dream of our house in the mountains–it’s small and charming with ivy crawling up the face of it, and there’s a red front door, but my favorite thing about it is the little mother-in-law house behind it, far enough away that it has its own space. That’s Nella’s house. She’s close enough to us that she can borrow a cup of sugar or ask for some help if she needs it, but she runs that precious space on her own…with her husband, of course. There are wildflowers in their front yard–Black-eyed Susans by the hundreds, and they don’t mind when I run over to cut some for my vases before dinner parties. I invite them to all my dinner parties and love when they come, but most of the time they are having fun with their own friends–and that makes me happy. I own a children’s bookstore in our little downtown, and Nella works there part time. She runs story hour every weekday at 10 a.m. for all the little kids, and they love to hear her read stories but mostly love the hugs she gives them after. She has another part time job–with benefits–in town and loves her work friends–and being a beloved aunt to her nieces and nephews. We’ve watched our kids grow up and follow their passions, and we’ve supported Nella as she’s tried new things, went to school, lived on her own and eventually fell in love and moved in to the little house out back. She is surrounded by love and people who will help support her when we are gone. We have worked hard, experienced challenges, overcome them together and learned a lot over the years. But we are here…and she is happy. And all those who know her are better for it. 

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I don’t know what the future holds, but I am grateful for more opportunities. Thank you Daymark Living for being one more star in the sky for our dreamers. If you are a parent who’s dreaming of more for your child, follow Daymark Living’s growth and feel free to inquire about the possibilities they hold.

If You Could Take Her Down Syndrome Away, Would You?

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I took the kids downtown this past weekend, an impromptu decision brought on by taking the dogs out early Sunday morning to be met by what us Florida folk call “a chill”–a drop in temps I’ll liberally define as “comparable to a northern fall.” Regardless, it was the kind of weather that begged us to be outside, so I dress the kids in long sleeves, throw Dash’s trike in the trunk, text Heidi with an invite to meet us and head south toward the fancy part of town we go to window shop and play at the good park.

“I’m doing this every weekend,” I always tell myself at the sight of so many people out and about, enjoying Fifth Avenue–mostly spry well-dressed rich people walking their dogs, but there are a few regular folk who help us blend in–that is, if you don’t count Dash ramming his tricycle into the front window displays of stores we have no business walking into. Or Nella, investigating the nether regions of street statues to see if their privates are showing.

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But the dogs–so many dogs, and my kids want to stop and make friends with every one of them.

What’s his name?
Is he nice?
Can we pet him?

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We pet Boomer and Kiki and Reba while their owners wait patiently and smile at my kids.

Heidi talks to a woman who’s sitting in the sunshine, enjoying a coffee. I’m distracted, making sure Dash is gentle with the dog he’s petting, but look up when Heidi calls me. “Kelle!” She smiles. “She has a son with Down syndrome,” she says, pointing to the older woman who’s intently watching Nella play.

“You do?” I say, “How old is he?”

There’s a pause that prepares me for what I know follows. “He passed away,” she answers. “Thirty-two years ago.”

“I’m sorry,” I say. “I bet you miss him every day.”

We talk a little bit about how things have changed for people with Down syndrome these past several years before I gather the kids to keep walking, and then Heidi grabs my arm.

“I’m sorry, Kell. Is that hard to hear?” she asks.

“I’m used to it,” I smile. “I guess I’m just thankful that so much has changed.”

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For one, how did word travel thirty-two years ago? How could a mother tell the world the secret story she discovered when she took that baby home? That the joy and love her child radiated and his will to learn and contribute was far more powerful than the narrative she had been told to believe about him. How could she spread word of the powers of human connection she was discovering–the way she saw things differently, the way all her investments in a life of comfort and convenience had crumbled only to give way to something new she didn’t realize existed–an understanding that allowed her to love better, fight harder, and appreciate people for every ounce of spirit that beams from their very existence.

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Do you know what the life expectancy was for a person with Down syndrome in 1983? 25.
And today? 60, with many people with Down syndrome living into their 70s. And while much of this is due to the end of inhumanely institutionalizing individuals, I believe so many of the actions that have changed the outlooks for our children’s future are due to the power of story–moms and dads and grandmas and grandpas, brothers and sisters and friends shouting to the world, “She is worthy, she is smart, she is beautiful, she is happy, she is funny, she is capable, and you know what? She’s a lot like your kid.” Now that we have more tools to be heard, seen and to tell our stories, the world is expanding.

This month, for Down Syndrome Awareness month, I’ve read countless stories from families of a child with Down syndrome–how much these kids are loved, how much their families can’t imagine life without them, how they believe in them, advocate for them and continue to discover–alongside their children–what life is truly about. Based on the algorithms of who I follow on Instagram, my entire Explore page is full of babies of Down syndrome, so I frequently pop in to see these new families beginning. Behind the rawness of the uncertainty of those first few months, the love is palpable, and that’s the most powerful foundation a story can have.

Last month I spoke at the annual conference for the Utah Down Syndrome Foundation, the theme of which celebrated the power of storytelling in advocacy. Yes, things have changed and yes, raising a child with Down syndrome in 2016 is so much easier than it was in 1983, but there’s still an outdated narrative that our stories need to flood out–that this isn’t some sad thing that happened to us that burdens our everyday life. Someone in the crowd raised her hand and asked a question I hadn’t been asked in a long time–“If you could take her Down syndrome away, would you?”

It’s a hard question to answer. We try and separate Down syndrome from who Nella is and often compare her challenges to that of asthma or allergies in that it’s just something she has, not something she is. And yet if you asked any mama if they would take away asthma from their child, I’m sure they’d jump at the chance. No one likes to see their child go through physical struggles, especially ones that affect the opportunities they’re presented with.

But I can’t imagine Nella without Down syndrome, and in a way it is part of who she is. There’s a love, a vibrancy, a compassion, an awareness of people’s need to be seen, and a determination to take in the world that is just…well, Nella, and I don’t know how much of it may be wrapped up in the mystery of that extra chromosome.

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Would I change her? Not her spirit, not her face, not her will, not her heart. Not the way she’s taught me to slow down and stop expecting life to roll out exactly how I planned. Not her crescent moon eyes that squint into tiny slits every time she smiles or the way, when her hand is in mine, I don’t worry so much about tomorrow because this moment right now demands all the emotion I can muster…and that’s happiness. She exudes it. So I will attempt to change what I can–the world around her. To value her, offer opportunities, expand its definition of beauty and success, and to celebrate the many things that make us different.

As for quality of life, I’ve got six years on this now. Our cuddly baby with the big blue eyes and milky skin grew into a girl, and we entered realms I used to worry about–public education, IEP meetings, bigger social settings and opportunities where her challenges are more prevalent and less cushioned by the bliss that is babyhood. But you know what? Life continues to get more beautiful, stretching my perspective, demanding growth and yet, without fail, offering more–more beauty, more love.

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I am so grateful to be living this story as her mom in an age where I can watch, listen and learn from the many others who share it with us.

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If you haven’t seen these, three online mama friends shared their stories in beautiful ways this month, and they made some incredible impact in the media: Amanda Booth and her little Micah, Oakley Peterson’s video of Welles’ story and little Sofia, self advocating like a boss. Your voice, your stories…the world needs them. It’s the most powerful advocacy tool we possess.

Happy Down Syndrome Awareness Month.