Enjoying the Small Things

Enjoying the Small Things

Countdown to 3-21, World Down Syndrome Awareness Day

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Four years ago, I made my first trip with Ruby’s Rainbow to visit two students with Down syndrome who were attending college. Liz and I had met online, talked on the phone briefly and arranged a trip together so she could show me what her little organization was doing–providing post secondary education scholarships to people with Down syndrome who were changing the course of their lives by pursuing more than had ever been offered to them before. More education, more opportunity. The idea of someone with Down syndrome going to college was new to me, and I wanted to see what it looked like before I brought it to you all to ask for help in supporting it.

One of the students we visited on that first trip to Western Carolina University was Ali Hale, and I’ll never forget walking in her dorm and meeting her for the first time–seeing photos of her family framed on her desk, watching her tap away on her computer just like any other student and noticing the newspaper article she had taped to her dorm wall, with her photo on it and the headline–“Dreams Coming True for Hickory Youth.” Her hometown newspaper covered the story of her path to college and knew, like I did, that the story of a person with Down syndrome going to college was special–out of the ordinary–headline worthy.

The goal of Ruby’s Rainbow is to take the headlines away–to make the opportunity of college more accessible, more normal, more possible for more individuals with Down syndrome so that pursuing higher education isn’t extraordinary. I’ve been so lucky to work alongside this organization, visit colleges that are offering programs to people with intellectual disabilities, talk to families and students, watch Liz as she works every day to raise money and support these individuals as they make a better life and see first hand the benefits that more education yields for our friends with Down syndrome who want what everybody else wants–independence and the opportunity for fulfilling work.

At the beginning of the school year this year, Liz and I went back to North Carolina to visit Ali again and see what life is like after college.

Like any other graduate, building a life of independence is complicated and not without challenges. And while Ali is fortunate to have fulfilling jobs and a home she shares with a roommate, she still receives support in some areas.

We wanted to see all of it–to hear the challenges, to understand the hard work behind Ali’s success and to show you all that comes together to create stories like Ali’s. I’ve watched this film five times now, and I cry at the end every time.

Once a year, I ask you to join me, and I’m here again today extending an invitation to be part of this story–to help create more opportunities like the ones Ali’s been given for more individuals. March 21 is World Down Syndrome Awareness Day, and our goal is to make this year the best year ever for Ruby’s Rainbow so they can send more students like Ali to college. We have two weeks, and all we ask is that you take the 3-21 Pledge to help us celebrate.

Here’s how the 3-21 Pledge works.

1. Click here to make a $21 pledge.
2. Pledge to be kind and considerate to people of all abilities (You got this one!).
3. Share your pledge with 3 people (or more!) and ask them to do the same.

The 3-21 Pledge visually tracks your donation and people who donate from your link, so you can see exactly how much your pledge grows, a true testament to the fact that one person can make a huge difference. Social media creates wonderful momentum for missions like Ruby’s Rainbow and the 3-21 Pledge, and they can’t make this happen without you. Make it personal–tell your friends why it matters.

Since Nella was born, this online community has been so gracious and wonderful in supporting our mission to help people with Down syndrome, and I can’t begin to tell you what that means. It takes a village, and we are so grateful that you all are a part of ours.

Helping Your Child With Special Needs Develop Meaningful Friendships

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It was the first major weight I felt when we brought Nella home from the hospital, still reeling from her diagnosis…would she have friends?  Would she be invited to birthday parties and chosen to sit with in the cafeteria at school? Would she have play dates and sleepovers and best friends on speed dial; or would her disability limit her socially, making it challenging for her to find what we are all wired to seek out in life–real, soul-filling connection? Advocacy for inclusion and improvements within our society and education systems have definitely helped change the typical social story for someone with special needs, but still–making and maintaining meaningful friendships and interacting in groups can be a significant challenge for kids with disabilities, especially when you add in communication delays, behavior issues, social quirks and classroom settings with curriculum rigor that doesn’t create the best environment for cultivating friendships and really getting to know kids.

There are so many factors that contribute to beautiful friendships, from parents’ attitudes at home and specific personalities of kids, to teachers who take great efforts to foster connection in their classrooms. In nine years, we’ve learned so much about what works and what doesn’t for helping Nella maintain friendships, and I’m so grateful that I can say Nella’s life is rich with beautiful friends. I want them of course to satisfy Nella’s heart, but I want them just as much for her friends because I believe loving someone with special needs and having close relationships at a young age with other kids who are different is not only deeply fulfilling for them but important for the success of our future workplace and community settings.

Things may change over the years, but we’re committed to doing everything we can as her parents to help her feel fulfilled in this area. I thought I’d share a few things we’ve learned today, and a some tips that have worked for us in building her little network.

Investigate
Just as with typical kids, our children are drawn to different individuals at school based on interests and personalities. We usually find out about these relationships when we ask questions like “Who did you play with at recess?” or “Tell me more about this Abigail you’ve been talking about.” We may then want to meet the parents, reach out for a phone number, set up a play date; but extracting these initial bits of information can be difficult with kids who aren’t as communicative or take longer to open up in group settings. So get in there. Ask the teacher if there are any kids in particular who seem to connect well with your child. Better yet, volunteer in the classroom or chaperone a field trip (I’m tagging along on hers this week!) so you can observe and get to know some of the kids. Some of Nella’s closest friends came from the early days of school when we were tipped off that a couple of little girls were drawn to her like magnets. Volunteering in her classroom allowed me to see these relationships up close, and soon I was reaching out to their moms, simply to let them know how much our family appreciated their daughters’ friendships. To this day, these kids and their moms are part of our village. Every bit of information we receive about Nella when she’s away from us is a tool in helping her move forward. Socializing is just as important as academics if not more, so make sure when you’re asking about academic progress and receiving reports about math and reading, you pursue all the information and stories about friends and social groups as well. Find out a little girl named Julia holds your child’s hand every day and asks to sit by her? Get on that! Introduce yourself to Julia’s mom.

Thank the Parents
It’s not that we think signing up to be Nella’s friend deserves a trophy. Believe me, we’re being thanked as well because the value of friendship goes both ways. But I’ll always be connected in some way to that old me who had so many fears and worries, and I can’t help but feel especially grateful–to the point of wanting to shower every one of her friends with love–when I watch Nella arrive at school and be mobbed with hugs and high fives. There is connective power in honest vulnerability, and every parent loves hearing how wonderful their child is. So I’ve sent texts and still do to Nella’s friends’ parents, even the ones I don’t know very well, to let them know what their child’s friendship means to us. I remember one of the first texts I sent when Nella was in kindergarten–to a mom whose little girl showed a remarkable gift for loving Nella, treating her just like everyone else while subtly helping her when she needed help. “I’m Nella’s mom,” I texted her, “and I just want to tell you how much we appreciate your daughter. When Nella was born, it was one one of my greatest fears–that she wouldn’t have friends–and watching your daughter be such an amazing friend to her has brought me and my husband so much joy and has made this transition to public school so much smoother for us. Thank you for raising such an awesome kid. We look forward to getting to know your family more!” She texted back, “Honey, you say the date, and we’ll be there. We love your Nella so much!”

When kids are little, parents steer the ships, set up the play dates and represent a big part of maintaining relationships. Connect with the parents to further connections with their kids. A simple “Thank you, your kid is so special and we are so grateful for this friendship” is a great way to start.

Think About the Presence of Siblings at Play Dates
This one has been something we change up now and then because there are benefits both to having Lainey and Dash around when Nella’s friends come for a play date as well as giving her an opportunity for a “just Nella” play date. Because Lainey is a kid magnet, kids are often drawn to her which can leave Nella hanging. Lainey’s usually great about pulling Nella in, but we try and schedule play dates sometimes when Lainey and Dash are off on their own adventures too.

Think About the Number of Kids You Invite for a Play Date
When Nella was younger, it was nice to have more than one friend over so there wasn’t too much pressure on Nella to be “on” and to give her friend someone else to play with if Nella needed a break. But she’s kind of matured out of that now and can hang great with friends on her own (yay!). Sometimes having just one friend over at a time is really special and keeps them focused on each other.

Find Common Ground…Get Creative!
I’ve been well aware that the learning and behavior gap between Nella and her friends grows more recognizable the older she gets, and I know finding common ground for play dates might get trickier. It’s easy when everyone loves Barbies. Find out what your child’s friends are into, and try and incorporate those interests in play dates to keep everyone having fun. There are a lot of activities that work for all ages, all interests and all skill levels–it might just take a little creativity exploring them. Things that always work for us: swimming, going to “Bounce” (an indoor trampoline park), karaoke and dancing with microphones (especially if I know what hit songs the kids are loving), sidewalk chalk, crafts, hide-and-seek, scavenger hunts, games (like Pie Face, Don’t Break the Ice, Hungry Hippos, etc.) and anything outside. I try and create an environment for independent play so Nella is socializing without relying on me to help, but sometimes she needs a few catalysts in place to get it rolling.

Talk to Your Child and Model Friendship Building Skills
Even though we make accommodations here and there for social gatherings, we hold high expectations for Nella and have the same conversations with her that we do with all our kids regarding friendships. In kindergarten days, sometimes she’d run off and want to be alone right in the middle of her own birthday party. While we made room for that and learned from it, we still talked to her about what her behavior meant, reminding her of how her actions affect her friends’ feelings and teaching her good manners. We still talk a lot about what it means to be a good friend which sometimes requires modeling conversations and scenarios. One time, I about died at the park when a little girl came up and asked, “Can I play?” and Nella snapped back, “No!” I amended the situation and then ran to Heidi, mortified, muttering, “And there you have it. My kid who I advocate for people to include just totally excluded that little girl. Go figure.” Kids with Down syndrome are not “always angels,” thank you very much. Kids are kids, and many times they need to be taught and shown how to be kind. The bottom line is, I don’t just want kids to play with Nella; I want them to want to play with her which means she needs to be kind and supportive.

Hire a Babysitter
This one has been really helpful for birthday parties. We have a couple teenage babysitters who are magic with kids. When they initiate games, everyone wants to play; and because they’re familiar with Nella, they know just how to keep her involved. When there are big group activities, our babysitters provide just enough support to Nella (and another little girl with Down syndrome at our last party) to keep the activity from becoming overwhelming. Sometimes it’s nice to have someone else who’s not Mom providing a little support–looks more like training wheels on a big bike toward independence rather than Mom who represents more of a tricycle. Did I go wayward with that analogy? Because I can do that sometimes.

Find a Special Needs Extracurricular Class
Last year, for no good reason other than my own instincts, I felt it was important to find something for Nella where she could interact with friends who also have Down syndrome. We joined a little theater group and were immediately reunited with a friend we met when she was a baby. We have lots of friends around the country who have Down syndrome, and we talk and FaceTime with them regularly. We talk about the fact that they have Down syndrome–“just like you, Nella!” to remind her that there are lots of kids who struggle with some of the same things she struggles with. As Nella grows older, I know these friendships are going to become more important, so we invest in them. Lucky us, we benefit as well because we love our community of families and friends. If you’re feeling the need for your child to meet new friends, search out local groups and/or classes for kids with special needs. You can start Special Olympics as early as eight years old which is a great place to begin.

Take Pictures of Their Friends and Talk About Them
I’m passionate about this one because I’ve seen how powerful it is. When your child is together with friends, take pictures. Collect them, save them, display them in their rooms. Print a little book full of nothing but friend photos. That one birthday party we threw when Nella shut down and didn’t want to play much with her friends? I remember feeling frustrated like “Well, that was a wash” until she was sitting on my lap looking at the photos of the party a few days later. Her face lit up, and she wanted to study every image. She pointed to each friend, said their name, talked about them with the biggest smile and asked me to go back to the photos for weeks after the party was over. We hope as she grows, her friendship circles continue to swell and that she always feels rich in that area; but we know that it can become more challenging, especially in middle school and high school. The photos help support the truth we always want her to know in her heart, no matter how many birthday parties she gets invited to–Look at all your friends! Look at all the fun you’ve had with them! My goodness, you are a lucky girl! Even as I’ve type this post, she’s walked in my office and completely lit up when she saw the photos on the screen. “Go back,” she asked, prompting me to scroll up so she can take them all in. In fact, I stopped and put a quick print order in of the photos in this post so we can display a friend board in her room. Here’s another good reason to take these photos: When all these friends show up at her high school graduation open house someday to celebrate her, I want them to be reminded of all the memories and all the years they’ve shared together.

This is what we want for our kids, and this is what they all deserve…connection and love and someone to spill their secrets to.

We hope it all happens naturally and without much effort, but even for our typical kids, sometimes they need a little support. My friend who has a grown daughter with Down syndrome (with a huge circle of friends, by the way) calls it “putting your mitts on.” Get involved.

“I am not ashamed to tell you I rented a bounce house once to get the kids over our house,” another friend laughed and admitted. “The neighborhood kids came, and my son met two new friends who became close buds.”

Whatever the case, we’re here to watch these beautiful friendships grow over the years. Pop the popcorn for the sleepovers. Wait for the first photo to be texted showing what a good time she’s having at the homecoming dance.

How Do You Address People who Make Fun of Intellectual Disabilities and Responding to the R-Word

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Over break, I received this message from a middle school student:

Hi! I was wondering if you had any advice for me. I’m still in middle school, and there are a lot of kids who call things autistic or make fun of kids with Down syndrome. It is NOT okay, and I wanted to know if you have any tips for how to chew them out. Thank you so much!

I wrote her back, commending her on being a leader and thinking her response through and told her I’d sit down and make a list of different ways she can respond. I’ve been asked so many times how I react when I hear someone use the word “retarded,” so I figured this was a good time to tackle that one too. Unfortunately, even though it feels like we are in a more accepting age, people still make insensitive remarks, use offensive language and indirectly make people with intellectual disabilities the brunt of their jokes All. The. Time. But it often depends on who’s saying it and what setting we are in that determines how I respond. Is it a stranger or someone I know? Did I overhear it or was it said to me? Was it meant to be unkind or does someone well meaning truly not understand how it comes across?

I can tell you this though. From the day Nella was born, I’ve bristled every time something was said. Things that used to slide past me in television shows, words that maybe didn’t catch my attention in conversations before–they don’t go unnoticed anymore. If you accidentally said the word “retarded” when I was standing by, and you wondered later if I heard it, know that I did. I always hear it. It’s the rite of passage we inherit when we enter the world of special needs and are given the golden scepter–yeah, that’s what I’m calling it–golden scepter of opportunity. We get to love these people, and then we get to educate the world about that love.

Why are these words offensive? In the case of actually making fun of people with disabilities, I think it’s a given–you’re just an asshole, and it will catch up with you. Deliberately making fun of a marginalized group of people who spend their entire lives fighting for a sliver of the opportunities, friends, jobs and attention that naturally come easy for you simply because of the physiological coincidence that, up to this point (remember, anything can change), the cells in your body and mind have functioned in a way that makes things relatively easy for you–well, that says far more about you than them, and you’ll have to carry that and deal with it throughout life.

In the case of using the word “retard” or “retarded,” I still hear people argue things like,”Oh, come on; you know I don’t mean it like that” or “God, everyone and their politically correct terminology. Relax, it’s just a word.” Let’s talk about that for a moment. The definition of retarded means “less advanced in mental, physical, or social development than is usual for one’s age.” For years (although considered archaic terminology now), it was used to medically define people with intellectual disabilities. So whether you think you’re referring to them or not when you laugh at some absent-minded thing you did and say “how retarded,” you are. And it’s not a bunch of sensitive moms (although I’m proud to be that too) asking you to be politically correct. It’s an international movement backed by hundreds of thousands of people–stop using the R-word.

I didn’t always used to speak up when I heard the R-word or insensitive references to people with intellectual disabilities because I actually worried more about the feelings of the person saying it. “They’re going to feel awful when I say something” or “They didn’t mean it; they’re going to think I’m too sensitive.” But, do you know what? I DON’T CARE ANYMORE! I do not suppress something I feel passionate enough to speak up about for fear of what someone will think about me. And it’s 2019! I give people the benefit of the doubt that they want to be informed, that they’re confident and strong and open to learn ways they can be better. I trust they can handle it. And if they can’t? If their own ego and issues with being confronted or being wrong means they snap back or don’t agree, guess what? NOT MY CIRCUS, NOT MY MONKEYS! I did my part. I used my voice.

Young people, 2019 is a good time to speak up. This new generation has impressed me in so many ways, and more than ever, young people are using their voices and making efforts to make kindness and acceptance cool–to change our culture, to advocate, to include. And it’s working. No matter what someone’s response is, I promise you, you will stand out for someone who is kind and confident and a leader when you speak up for people with intellectual disabilities and make it clear that you don’t approve of intolerant language; and you will be respected for it.

Do I still have people in my life who use the word? Yes. And they’re good people. Most of the time, it slips and they immediately stop and say, “I’m so sorry. I don’t know why I said that. I hate that word.” It was sloppily used in everyday language for a long time, so I understand that it takes time for people to recognize how insensitive it is. Usually, if it’s a friend, I just smile and interject, “Can’t use that word, but go on–what were you saying?” And it works. We have had people we love continue to use it–people who I know are good and loving and care deeply about Nella, yet the word is still thrown around–“I felt so retarded”–like it’s no big deal. Keep speaking up though. Recently I had a deeper conversation about it with a friend who I finally interrupted.

“Can I tell you something?” I said. “You use that word a lot. And I know we’ve talked about it, and I know you say you don’t mean it to make fun. But I’m worried about the day that Nella gets old enough to understand it–and she will; I know she will. She’s going to be confused how someone she loves so much uses that word when she knows it’s hurtful to people like her. I don’t know how I’m going to explain that to her.” There were tears, and a long hug and a “Thank you for continuing to tell me. Thank you for giving me another chance to stop. I don’t ever want to hurt Nella. If you hear me say it again, say something.”

My sister was at a nice restaurant recently and overheard a table of diners use the word several times while they were enjoying their meal. As she was leaving, she walked over to the table and said, “I’m sorry to interrupt. I know you probably meant well, but I couldn’t help but hear the word “retard” used several times. I hear it a mile away. I have a niece with Down syndrome, and it kills me when people use that word as a joke. I just wanted to say something.” One of the men apologized and said he completely understood, one of the wives shooed her away with “Okay thanks, you can leave now,” but I bet they’ll remember the encounter. At least next time they go to drop the R-word, they’ll think about the woman in the restaurant who loved her niece.

All that said, I think it’s helpful to have prepared scripts when you’re advocating. Sometimes we don’t say anything simply because we can’t think of what to say. So I’m giving you some things to say today–a whole repertoire of responses for when you hear someone use the R-word or casually joke about people with intellectual disabilities. Whether it’s a friend or a stranger, said with intention or thrown out in ignorance–address it. Gently, firmly, seriously, with explanation or without. But please, say something. 

Here are a number of ways to address it:

  1. “I know what kind of person you are and I’ve seen how much you care about people, so I know you didn’t mean to hurt anyone. But jokingly using the word “retarded” to refer to your lapse of thinking is so hurtful to people with intellectual disabilities.”
  2. “Dude. It’s 2019, and that word is archaic and offensive. Get a dictionary and find another word.”
  3. “I made a promise to myself to speak up every time I hear that word used. I used to use it too until I realized how offensive it is. Please find a different way to phrase that.”
  4. “Hey, you’re better than what you just said. Maybe don’t make amazing people who work so hard and struggle with being accepted the brunt of your jokes. You’re too good to sink so low.”
  5. “Can I ask you something? Do you know anyone who’s autistic or has Down syndrome? Because if you did, I don’t think you’d joke like that. I have a friend who has an intellectual disability, and he’s really amazing. He doesn’t deserve to be the brunt of jokes.”
  6. “Friends don’t let friends use the R-word, so I’m stopping you right here.”
  7. “Choose a different word.”
  8. “Volunteer with me at one event for people with special needs, and I dare you to talk like that again. They could teach you a few things. You will love them.”
  9. “You sound really ignorant when you say things like that, and I know you’re not. Raise the bar, dude.”
  10. “Have you been living under a rock? We don’t use that word anymore.”
  11. “It surprises me that you’d use that word. You’re always so sensitive about the language you use.”
  12. “Would you say that live on camera if you knew people were going to hear it and judge who you are by it?”
  13. “People with intellectual disabilities have enough challenges they have to face in life to be accepted. Being the brunt of your jokes shouldn’t be one of them.”

Addendum: I forgot one my friend Liz uses when friends forget and say it. She tells them that anyone who uses the R-word has to run a naked lap around her house. Game changer. I’m just sayin.

For me, it’s easy to address because I have a child with an intellectual disability who is my heart. It is easy to explain to people how much I love her and how much it would kill me to watch her hear that word, knowing it’s been used for years as a joke with an underlying punchline that says that an intellectual disability makes you lower than everyone else. Because that’s exactly what you’re saying when you use the R-word or make intellectual disabilities a laughing matter. Because of that, it is easy for me to advocate. To speak up over and over and over. And I only hope that all of you have the privilege of loving someone like Nella too.