Enjoying the Small Things

Enjoying the Small Things

Nella’s Supports for a Successful School Year

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With the beginning of a new school year, we’ve reestablished our systems to stay organized at home, as well as make sure we start the year equipped with everything the kids need. All kids, of course, need support for a successful school year; but for Nella, it’s even more important. Learning and keeping up with school procedures requires more accommodations and support, and we want to set her up for the greatest success this year. Independence is our ultimate goal for her, and we are always thinking of ways we not only can help her learn and achieve success academically but also manage life skills on her own including home routines, getting ready for school, communicating with others and understanding her schedule and what’s required of her. Fortunately, routine is her super power. She loves consistency and embraces tasks and responsibility. There are a few things we’ve found to be helpful in supporting Nella through the school year I thought I’d share–some special needs parenting “hacks,” if you will.

Hire a Tutor
Any extra help Nella receives to practice basic reading, writing and math skills is helpful; and it’s nice to have someone other than family helping her (she’s less likely to whine or ask to go do something else). This year, we hired one of Nella’s favorite high school students to tutor her after school. Nella loves going, and it’s a great way for our high school friend to make some extra money as well as expand her experience as she prepares for college. I put together a tutoring box with resources for them to work on together and reached out to Nella’s teachers to send home any classwork that needed reinforcement.

What’s in our tutoring box?

– Handwriting Without Tears workbook
– Bob books
– Basic Addition & Subtraction workbooks
– Sight word Bingo
– Math manipulatives
– Handwriting white board and white board markers
– flash cards
– ideas for activities
– stickers, treasure box prizes to use as incentives for listening and working hard

The Target Dollar Spot also has some great inexpensive classroom and learning materials that make great tutoring box additions.

Glasses Hooks
I tell any parent of kids who wear glasses about these–they were life changers for us. We slide stay puts on Nella’s glasses to help her keep them from sliding down. Kids with Down syndrome don’t have the same nasal bone structure as other kids which can make keeping glasses on challenging. Stay puts are silicone soft hooks that slide over the bows of the glasses and hook over your child’s ears–keeps them secure on their face and prevents them from sliding down their nose.

Calendar Display with Related Arts Schedule
We are always working towards independence with Nella which includes basic school routines and not relying on us to know where she’s going every day or how she should be prepared. One of the great things about traveling with my friend Liz for Ruby’s Rainbow is getting to see up close what life is like for adults with Down syndrome who are going to college. We’ve tagged along so many different college students, giving us the opportunity to take a closer look at how they are succeeding–don’t think I haven’t taken notes on what we can start doing at home now! Visual displays, calendars, charts–these are all imperative for anyone’s success, but especially for people with Down syndrome. We keep a school calendar display, including a chart of Nella’s related arts schedule, in the central area of our home. Every morning, she asks “What do I have today?” so she knows how to dress, and we never answer for her. We take her to the calendar and make her figure it out. She loves this part of her morning routine now, and has figured out on her own how to find the day of the week, moving her little finger over until she finds the corresponding related arts. “Oh, I have music.”

Backpack Center
We laugh that Nella is the most responsible one in our home and that we all rely on her to keep us organized. She loves consistency and knowing where to put things. Last year, we had no “system” for backpacks, so the kids would drop them wherever they fell which made us scramble later when we were pulling homework folders out or looking for the dirty lunchbox to wash. Finally, at the end of the year, I couldn’t take it. We don’t really have a mudroom space, but we did have a laundry room closet we were using to store winter coats (that we only wear when we travel north in the winter) and old Halloween costumes–a total waste of a much needed closet. I removed the door, painted the closet, added a plank of wood with hooks and some basic storage shelving (temporary), and now we have a designated place for backpacks, lunch boxes and water bottles. This has been so great for Nella–she makes sure everyone hangs their backpacks and puts their lunch boxes away, and she heads right to the backpack cubby in the morning to pull everything we need to get ready.

Educating the Classroom about Special Needs
At the beginning of every school year, we ask that Nella’s class be educated about Down syndrome. Knowledge is power, and if we aren’t talking about obvious differences kids notice, they’ll make their own assumptions or think that disability is something to be ashamed of. Inviting the kids to ask questions and giving them specific tools they can use to communicate with and support Nella has created the most beautiful community of friends and cheerleaders for her. We give the staff this script to use as a guide and invite them to make it their own. This list of children’s books about specific disabilities and differences is also helpful when talking to classes.

Next on our list? Helping Nella learn how to tie her own shoes! (any tips?)

Yes You Can – Oxford Pennant Collaboration

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Early this year, I reached out to one of my favorite companies with an idea for a custom piece for Nella’s room and the possibility of turning it into something bigger I could share with you. It was fueled by my love for clean, colorful design but more so the message I want Nella to hear over and over–that she is not limited by a disability, and that her dreams in life are answered by the anthem of three powerful words: Yes. You. Can.

The company I approached is Oxford Pennant, a Buffalo shop I’ve been following for a few years now–obsessed with their aesthetic, products (made in the U.S.!), and creative passion behind their marketing. I also knew the owner had a niece with Down syndrome.

One banner snowballed into an entire collaboration–the first product collaboration I’ve ever done, and I could not be more thrilled with everything it turned out to be. A portion of the proceeds of every sale in this collaboration will benefit Ruby’s Rainbow, but the inclusive empowering messages are for us all…

Yes You Can.

Everyone’s Invited…

…and I Like You Just the Way You Are.

I was in Buffalo this past weekend for a fun launch event at the Oxford Pennant Shop, and can I just say, BUFFALO! You SLAYED me! What a fun, creative city with the warmest people. Buffalo’s 21 Connect also came to celebrate with us–a portion of the evening’s sales benefitting their continued mission to provide education about Down syndrome and support to families in the Buffalo community.

I brought home the banner that started it all and wasted no time in getting it hung in Nella’s room.

In a little over 24 hours in Buffalo, I got the full behind-the-scenes tour of Oxford Pennant and learned more about the story behind their company and the wonderful creative people who are part of it–all which made me even more proud to have my name next to theirs in these products I cannot wait to see out in the world.

There’s something for everyone in this collaboration…which is exactly what these products are about: Celebrating everything, everyone.

Shop the entire Kelle Hampton x Oxford Pennant collaboration, and when your banners and pennants and sweatshirts and patches are out there in the world, tag me in the pictures!

I love seeing these messages in your homes, knowing you’re loving something we made.
Can you buy everything in the collaboration online? YES YOU CAN!
Can you buy kid sizes AND adult sizes? YES YOU CAN!
Can you buy from another country? YES YOU CAN!
Can you help a passionate young adult with Down syndrome achieve their college dreams by shopping? YES YOU CAN!

So many yeses. xo

And the hugest thanks to my wonderful friends at Oxford Pennant for making these so beautiful.

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

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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.