Enjoying the Small Things

Enjoying the Small Things

Nella and Dash Now: The Changing Roles of Siblings in Special Needs Relationships

By

On Dash’s first day of preschool four years ago, Nella led the way. She buckled his seat belt, tucked his lunch box in his tote bag and guided him to his classroom, kitty-corner from hers. He was the freshman, she was the senior, and she took great pride in knowing the ropes. He needed her, and she loved that he needed her.

For six years, we’ve coasted in this wonderland of perfect sibling roles–of Knowing Older Sister leads Learning Younger Brother and everything good that comes with it. Dash likes to be the knowing one and has no problem trying to take boss status from Lainey, but Nella? He lets her lead.

This year, Nella again led Dash into his new school, into the same kindergarten classroom where she once had a seat sack with her name on it. She’s known every rhyme in the poetry notebook he’s brought home every Friday because she learned the same ones, and she’s quizzed him on sight words from the same chart she learned from.

But now that we are rounding the end of the year, it’s different. At some point this year, things began to shift as he sped through lessons and quickly mastered skills that she is still grasping. He’s a full-blown reader now and doesn’t need her help. He corrects her when she doesn’t pronounce a word right and jumps to finish a sentence she’s reading if it’s taking her longer than “Dash Time” which, frankly, isn’t a fair standard for anyone. Dash sees Nella as nothing more than his sister and playmate and, as every good brother should do, pushes her, believes in her and calls her out when she’s not performing to the level of his expectations for her. We love that and think it’s good for Nella, but there are holes in this method–like when he chastised her for her handwriting last week when they were comparing sentences they wrote together. “Nella, that’s so bad. Why do you write sloppy?” I saw her little pride bubble deflate a little as she quickly tucked her notebook away. From the rear view mirror on another day last week, I watched as Dash and Nella both pulled their art projects from their backpacks after they climbed in the back seat, so proud to show me; and I winced as Nella quickly pushed hers back into her bag once she saw Dash’s.

We’ve never minded the patient approach to supporting her beautiful slow and steady, deliberate path to academic learning; but we have admitted that the hardest thing about this path would be if she is discouraged in recognizing that it takes her a little longer or that her work looks a little different. For nine years, we’ve helped her build strong emotional muscles, stacked her with confidence, praised her uniqueness, cushioned the reality of “It takes you longer, and that’s okay!” with so many spoken examples of our own slower pace or delayed mastery of a skill coupled with great acceptance of ourselves: “Mommy takes a long time to read a book, and that’s okay–I don’t want to rush!” “Daddy has messy handwriting, but he keeps writing! It’s his trademark and he’s proud of it!” We subconsciously eat, sleep and breathe self acceptance and love for what makes us different in this home, hoping our kids–especially Nella–will absorb it by osmosis.

Nella has proven she can hold her own. It takes such grace and confidence to keep learning, keep reading, keep showing up in a classroom when you’re working on skills your peers have mastered long ago; but she does it, and she does it well. The one person’s compatibility that has meant the most to her though, is her brother’s; and as he surpasses her in math and reading skills, I’ll be honest in admitting that it’s sad to see their roles shift.

Here’s what I know though: We are good at creatively embracing a parenting challenge. We’ve been so fortunate to coast through the past couple of years without any major challenges with Nella. We got this! The other night, Brett and I talked about some of the things we are noticing lately, and I love how quickly our conversation shifted from “that’s sad” to “I have an idea!” We are naturally equipped with instincts to swoop in with solutions. Within ten minutes, we had a game plan for how we are going to support our family through these changes–how we can educate Dash to understand Nella’s needs more, how we can help Nella lean in to Dash’s growth and use it to her advantage, and how we can be better about identifying Nella’s unique strengths that her siblings don’t have and letting her shine in those moments. We are motivated and thankful for this nudge and are already noticing things getting better.

In a well-timed moment at the end of the week last week, right after Brett and I had talked about some of the changes we are noticing and how we basically wanted Nella to have some glorious moment of well-earned success recognized (you know–podium, trophy, cheering), we sat on our lanai at sunset, watching the kids play in the pool. I was snapping a few pictures, cautioning them to calm down a little because “someone’s going to lose an eye” when sure enough, Dash got hurt. His cries are a bat signal for Nella, and our superhero did what she does best–she ran to comfort. She is better at this than anyone. She is the senior, we are her freshmen. She scooped him right off his feet and held him like a baby, knowing he’d be weightless in the water.

He milked it, and she loved it, staying close to him and whispering things we couldn’t hear in his ear until he decided he had his fill of her love and attention. I asked him if he needed a Band-Aid, and he ignored me. He wanted her, not me.

She will always be his big sister and teach him the things she does better than anyone else. He doesn’t know yet how lucky he is to have a golden ticket into the course she’s teaching, but he will soon.

It’s been a rough weekend. Our sweet Latte is suddenly dwindling fast, and we may have to put her down. There have been so many tears the past few days. The other night, Nella climbed in bed with Lainey and patted her back as she cried. Over and over, she repeated, “I love you, Lainey.” She’s bringing so much light and compassion to this whole situation, and we all recognize how important her special gifts are.

Oh, and that art project she did? It’s perfect.

Countdown to 3-21, World Down Syndrome Awareness Day

By

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.

6 New Picture Books We’re Loving: Themes of Inclusion, Valuing Differences and Dealing with Hard Emotions

By

It is no secret that kids books send my my heart racing–the illustrations, the covers, the carefully chosen words woven together to help make big beautiful things in life make sense for kids.

I collect kids books like art and have great admiration for the authors and illustrators who use their words and pictures to entertain, delight and inspire children. We have whittled down our collection over the years to fit our shelves, and because we have little space and so many books (publishers send them to me as well), I find myself getting choosier about what new kids books stay in our home and what books I buy for the kids.

The good ones find a way to get in though because I cannot resist beautiful children’s literature, and there are so many new wonderful books being published. I posted this list of 50 of our favorite picture books, but we’ve added several to it since. Especially of note are some new books that deal with important issues for kids–inclusion, acceptance, understanding hard emotions and recognizing, loving and valuing the way we are different from others. These six new books spark needed conversations with kids around these topics and all received the golden ticket to join our favorites collection.

Everybody’s Welcome – A beautiful message of inclusion, this book tells the story of a group of forest animals who all come together to build a home where everyone is welcome and everyone belongs. The illustrations have a beautiful vintage feel to them with a warm and woodsy color palette.

All the Ways to Be Smart – a little hard to get your hands on in the US right now (UK publisher, I believe), but it’s worth the extra shipping. When I heard about this book before Christmas, I went on a wild goose chase to get it–that’s how bad I wanted it. It’s pertinent for every child who has ever compared how smart they are to someone else or how good they are at something compared with how good someone else is. I’m pretty sure that’s EVERY CHILD. And it has a whole other layer of depth for those of us raising a child with an intellectual disability. The message woven through this book is one I feel so passionate that children understand, especially in this day and age of standardized testing being used so heavily to define a child’s ability. That is, there are SO many ways to be smart, and all of them are important. Books and tests are one tiny way, but there’s understanding people, and being a good storyteller, and playing music, and entertaining a crowd, and asking good questions, and caring for others, and making creative fashion choices…the list goes on and on and on. Every child who reads this book will know that their kind of smart is so valuable. Darling illustrations, fun rhyming, and a concept with such depth presented in the most easy-to-understand way for kids.

The Big Umbrella – Similar to the theme of Everybody’s Welcome, this book prompts conversations about kindness and inclusion through the story of an umbrella where everyone is welcome to stand under when it rains, no matter what you look like or how different you are. The underlying theme: Don’t worry that there won’t be enough room under the umbrella. Because there will always be room.

When Charlie Met Emma – This forthcoming book (March 12–can be preordered) is by my friend Amy Webb, the perfect person to write a children’s book about inclusion. Amy has a daughter with limb differences just like the main character in this book who helps a new friend understand how to treat her–just like everyone else. “Different is just different, and different is great.” If you’ve ever wondered how to teach your child how to “react” when meeting someone who looks different or has an obvious disability, this book is a great way to talk about it and remind kids that behind the disability we see is an interesting person–much like you and me–who makes a great friend.

Remarkably You – I want to memorize every word of this book to sing to my children in their sleep — such an empowering message packed in the beautifully illustrated pages of this book. OWN WHO YOU ARE and know your potential. Whether you’re loud or shy, the quiet bookworm, the funny one always making people laugh, the fast one, the one taking her time, the one who easily receives attention or the quiet unnoticed one…DO NOT CHANGE WHO YOU ARE to be like everyone else. Know that you make an impact, just as you are. I love this line: “No matter your volume, your age, or your size, YOU have the power to be a surprise. …You could change the world. Are you willing to start?

When Sadness is at Your Door – An emotionally brilliant book for kids. We have lots of kids books about happy emotions, but we need more books that help kids understand, accept and deal with the other emotions that are every bit as much a part of childhood as all the feel good stuff–sadness, anger, anxiety, etc. This brand new book helps kids understand Sadness and welcome it as a visitor–to give it a name and face and understand that it’s not some haunting cloud that’s part of them but a normal passing guest. The author also give kids some ideas of things they can do with their visitor–draw, sit quietly, take a walk, etc. This book reminds me of the brilliant message about emotions in Pixar’s movie Inside Out and is a good emotion refresher course for adults too.

Any new favorite children’s books you are loving? You know I love to hear about them!