Enjoying the Small Things

Enjoying the Small Things

  • ABOUT
    • KELLE HAMPTON + ETST BLOG
    • Our Down Syndrome Journey
    • Down Syndrome: Our Family Today
    • PRESS
  • the book
  • The Blog
    • Make Stuff
    • Family
    • Favorites
    • Parenting
    • Parties
    • Style
    • Travel
  • Once Upon A Summer PDF
  • Printables
  • CONTACT

How to Be a Grandparent

October 16, 2017 By Kelle

Of all the things I’m grateful that my kids get to experience, I don’t think anything compares to the moments they share with their grandparents. There isn’t a family dinner that goes by–a package of handmade goodies my mom sends, a story Brett’s dad tells Lainey, a sleepover at Brett’s mom’s house, a moon walk with my dad–that I don’t make mental note how lucky we are to have meaningful relationships with grandparents and so many memories stashed away. I have one living grandparent and she means more to me every day–and the memories of the ones who have passed have become comforting reassurances that often lead me home when I’ve wandered away from what’s important and what I want in life.

Each of my kids’ grandparents (we have 8 thanks to the blessings of remarriage and the beauty of family complexities) holds a special place and fills a unique role in our lives, but today I’m thrilled to be sharing a few of my dad’s words on what grandparenting means to him and his tips for maintaining a meaningful bond with the littles…no matter how old they are.

 photo poppa 2_zpsdv7ietha.jpg

On Being Poppa
by Rik Cryderman

I’ve been introduced with titles I’ve been proud to hold, taken my place on the dais in the company of greatness, heard kind tributes that stirred my heart and made my eyes pool with tears, but there’s one word that melts me and finally tells me I’ve climbed to the summit of all I’ve longed to ever be…That word is Poppa.

 photo poppa 1_zpsvxigrlwl.jpg

It begins every sentence their little lips launch or their teenage fingers text. It heralds each announcement they share in my presence. It’s their personal password for plans they propose, “Poppa, maybe we could build a tree fort, you and me”…and, years later, “Poppa, can I bring my boyfriend to dinner on Thursday?”

 photo poppa 5_zps4qirjbzd.jpg

“Daddy” was good—I thought nothing could be better, but “Poppa” tops it all, letting us do it all again, with a heart tendered by time, a mind enlightened by experience and a spirit humbled by age. And since my retirement, loving my grandchildren has become even more intentional, inspiring, invigorating. Listening to their uninterrupted narrative, attempting sound answers for their unending questions and accepting their sweet invitations to play, pretend, create and be amused—this trumps every greyhound tempting rabbit I ever chased in my career.

 photo poppa 3_zpsupeufztr.jpg

I have few memories of my own grandparents. Being the youngest in my family, I said goodbye to mine as a little boy, cherishing the few clear memories as treasures. The privilege to imprint my babies’ babies with some stories that will echo when I’m gone, some lessons that will teach when I’ve left, some love that will warm when I can no longer hold them close—that is a blessing sacred and strong. To know them, really know them, and to let them know you—therein is the precious and powerful passing of the baton, firmly in the hands of the tomorrow you cannot enter, except through the hearts of your grandchildren.

 photo poppa 4_zpswtom0mrd.jpg

If I were to offer advice to one new to grand-parenting, I would tell them:

Bring your grandchildren home. Just them. Without their parents. Make them your focus. Listen. With your heart. Make them feel their words are wise and wonderful. Let them teach you. Let them try things. Let them fail. Let them try again. Be playful. Be silly. Don’t always be the wisest, the corrector, the one with the last word. Value their dreams, their differences, their dedication to the passions they pursue and the positions they hold. (It’s easier when they’re 10 and a Taylor Swift fan but more important when they’re 17, and at a Bernie Sanders rally). Be a safe listener. This is critical with the older grandchildren. While the toddlers’ antics and anecdotes are fun to share, the teen’s issues and queries should be guarded as treasures. Be a vault not a voice box—and they will continue to trust…and talk—sometimes sharing things with you they bring to no others. Learn their language, know their loves, plot the latitude of their life. I’ve got Toca Boca on my IPhone and Shawn the Sheep on my Firestick, but I also know what Coachella is and can decipher the cryptic captions on my cool teen granddaughter’s Instagram feed.

Tell them they’re wonderful, the brightest, most beautiful, the bestest of all (making up superlative words is perfectly acceptable). Read them bookshelves of stories, but employ bold volume and exaggerated cadence to bring them along. Change your voice, use an accent, falsetto, deep bass.  And make up stories, with drama and details where they have the lead. If you scare them, hold them close and make the ending just perfect. If you want them to laugh, break the dyke on the silly—let it flow ‘til they shake! Decorum’s forgettable, but the ridiculous is remembered forever. Tell them stories where they are the champions, the winners, the greatest around. Let them know of your life—your strengths AND your struggles, your big moments AND your bumbled mistakes. Share your faith, without preaching, persuading or projecting. Share it as an anchor in storms, an ally in lonely times, a comfort in crisis. If it’s part of you, show them, let them know you.

 photo poppa 8_zpskifsm4v2.jpg

Create rituals, like simple repeated activities you can almost hear them someday tell their children, “Poppa always let me make pancakes all by myself.” Keep their things in your home like you’re hoping they’ll come, and when they do, they’ll see—you’ve been expecting their visit, there’s room for them here. Buy a step stool to help them work beside you in the kitchen, reach the Oreos in your pantry, brush their teeth by themselves. Take their messes in stride, their fears as quite normal, and an occasional tantrum as a compliment—you’re family, you’re home. Hold them, hug them, give them a kiss. Tell them you love them, with eyes locked and voice sure. Be unexpected, spontaneous, serendipitous too—taking moon walks with flashlights, hearing bird songs before breakfast, sitting down on the curb with your knees on your chin, because the little boy beside you loves big garbage trucks and you’ve heard a distant roar that tells you it’s coming your way. These are the things that will set your heart’s rhythm and carve deeply your profile on the hearts of your grands. These are the things that, long after you’re gone, will make the sound of your name bring a far away gaze and a sweet settled smile to the face of the little who stood on a stool right beside you and made “the best pancakes I’ve ever, ever tasted, and I’m telling the truth.”

 photo poppa 9_zpseabyq5eg.jpg

Filed Under: Family 61 Comments

A Potter Party Family Night

October 9, 2017 By Kelle

I’ve been looking forward to Harry Potter Movie Night pretty much since I gave birth to a child ten years ago. I’ve read a lot of books in my life and can’t tell you where I was for most of them, but the Potter books? I think everyone remembers where they were for those–in my case, going to college, living with my grandparents, studying Wordsworth and Keats by day and J.K. Rowling by night. I drove two hours home on weekends to work in the hospital blood lab, a job that required me to man the phones and take tubes of blood sent from patient floors to their respective specialty rooms to be spun and analyzed. It was quiet on weekends, so Harry Potter came with me, and I vividly remember sitting hunched over the desk in my lab coat, turning page after page, stopping only to answer a phone or input a blood test when it arrived on the dumb waiter–sometimes unnoticed during a particularly harrowing event in the book.

Phlebotomist: “Ah, Kelle. You gonna get that? The dumb waiter alarm is going off.”

Me: “Would you shut up? Syrius Black just died! Have some respect! Jesus.”

It was amazing how quickly eight hour work days sped by when Harry Potter was with me. The elaborate imagination and detailed descriptions of that magical world transformed me, and I’ve waited over fifteen years to pass that on. And then came Lainey: “Dear God, please keep this baby healthy…and help her to love Harry Potter. Amen.”

Here’s the thing. We attempted to read the books together earlier this year, and even with the help of the Audible narrator’s British accent, Lainey was–oh, this is hard. She was….wait for it. She was like, “Meh.”

MIC DROP.

I repeat, I introduced my kid to Harry Potter, and I GOT APATHY.

Aw, hell naw. We’re doing this again. THIS TIME WITH FEELING.

We’re goin’ straight for the jugular. Jump to the movie. Add bells and whistles. Which brings me to our fall bucket list and that little unchecked box next to “Watch Harry Potter with Candles, Butterbeer and Bertie Bott’s Beans.” We took care of it this past weekend.

So here’s how we’re going to do this: I will bring this movie to life. I will make you feel the magic. I will lure you with Honeyduke’s candy and hook you with butterbeer.

Truth is, I love family nights and movies and end-of-the-year holidays, and this little party is less about forcing my kids to love Harry Potter and more about celebrating October in a fun, special way. And before I show you a peek at our little Potter party, let me also tell you that when you see stuff like this–fun parties for kids or holiday crafts and celebrations, for example–on my site or in my social media feeds, this isn’t about attempting to be a good mom. I don’t associate being a good mom with celebrations and details and parties. But I do associate being a good mom with doing things that make me happy and inviting my kids to witness my happiness and be part of it. This is more about me than my kids. Because I like creating things and celebrating parties and making space for the 10-year-old girl inside who never died. It makes me happy. And I think the best way to be a good mom is to do things that make you happy. For you, that might be Crossfit or home decorating or cooking or tending to your garden. For me, it’s planning little celebrations and making them come to life. I loved this little family night so much, and more than wanting my kids to remember any of the details I planned, I hope they recall someday, “Remember that Harry Potter party we did when we were little? Mom was so happy. She was doing what she loved.”

And it was simpler than it sounds. The family activity planned was simply to watch Harry Potter together as a family on a Saturday night. What I added? Four things:

1. Floating Candles. I hung twelve “floating candles” in the air with fish line. I didn’t get as elaborate as this D.I.Y., but I followed a similar method, tucking flameless flickering tea lights into cardstock paper that I rolled around the tea light and taped in place. I then taped two strands of fishing line on the candle and strung them to the ceiling. It took me 30 minutes to make and hang twelve of them.

 photo print 26_zpsnoluvqxo.jpg

2. We made a candy bar to model the Honeyduke’s shop in the book.

 photo print 13_zpsicwgd8kq.jpg

I poured melted Wilton chocolate melts in this frog mold for the chocolate frogs, and for the fizzing whizzbies, I poured chocolate melts into this bee mold but layered pop rocks in the middle. The fizzing whizzbies were definitely the favorite.

3. We made butterbeer.

I looked at several recipes, but a lot of them were just too rich (butterscotch PLUS brown sugar PLUS whipping cream PLUS condensed milk PLUS cream soda–whoa). Ours was pretty simple–I mixed vanilla ice cream with a tiny bit of milk and butterscotch topping in the blender. I poured cold cream soda in a frosted glass leaving room at the top for our butterscotch “foam” and then spooned the ice cream mixture over top. For the adults, we added some rum and butterscotch Shnapps. Totally delicious.

 photo print 16_zpsefglvvcl.jpg

4. We dressed the part. 

 photo print 8_zpstxqpxv9p.jpg

I dug up some witch hats from last year’s Halloween party, found Harry Potter glasses and drew Harry’s forehead scar with eye liner. Dash dug up a cape from the dress up basket.

 photo print 14_zpszor7n6vd.jpg

And I love that just when I wonder, “Is Lainey growing out of this? Am I too extra for her?,” she comes out of her room with a wad of black pipe cleaners and hands them to my dad. “Poppa, can you turn these into a witch hat for Latte to wear?” because she believes, like I do, that my dad can make anything. Later, when Lainey’s friend arrived for a sleepover, she came to me and asked if I could make a Harry Potter scar on her too and if we had another witch hat. Be still my heart, I thought you’d never ask.

 photo print 11_zpsulipx87s.jpg

And that’s it. That’s all you need to make it special. Candy, candles, a good drink and a hat. The rest, as they say, was…magic.

 photo print 6_zpsx5f48zpb.jpg

We’ve rekindled a love for Harry Potter, and I couldn’t be happier about it. While Nella and Dash eventually fell asleep, Lainey was all in. And for at least a good hour, it was everyone…huddled together by candlelight, sipping butterbeer, entranced by the magic of Hogwarts…making one special memory.

 photo print 4_zpsyr4s1fzn.jpg

 photo print 21_zpsy5ods3ec.jpg

Honeyduke’s Intermission:

 photo print 24_zpsboa0ozjf.jpg

 photo print 20_zpsyk9vjt7j.jpg

And Brett got to bust out his new popcorn maker, so he’s happy.

 photo print 27_zpshhyrin7r.jpg

 photo print 10_zpsk6ug38wx.jpg

 photo print 19_zps0oppd7ru.jpg

 photo print 22_zpsbfbls3hd.jpg

 photo print 9_zpsdzmvbhpk.jpg

 photo print 12_zpsaoh2hx4u.jpg

This scene at the end of the night:

 photo print 3_zpsskfqxszu.jpg

Top night. I love these last months of the year and the little celebrations they hold.

 photo print 2_zpskdoqnpce.jpg

Filed Under: Family, Holiday, Parties 28 Comments

Am I Doing It Right?: Special Needs and Siblings

January 12, 2017 By Kelle

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.

 photo print 60_zps17ue50dl.jpg

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.

 photo print 58_zpsxld2hwfr.jpg

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!”

 photo siblings liz_zpskn47hj9h.jpg

“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.

 photo print 28_zpsj7gfntph.jpg

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

 photo sibings heather_zpssuc7gfzk.jpeg

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. 😮)

 photo print 16_zps1e5wvsp6.jpg

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.”

 photo siblings heather 3_zpsgozzpuee.jpeg

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.

 photo lids_zpsykjncdm3.jpg

 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.

 photo print 30_zpsjq5tejy2.jpg

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.

 photo print 20_zpsxqiyfwuv.jpg

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.

 photo print 23_zpshthkuney.jpg

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.

 photo print 57_zpszzrzbikr.jpg

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.

 photo print 69_zpsqxwl84gq.jpg

Filed Under: Down Syndrome, Family, Uncategorized 34 Comments

  • « Previous Page
  • 1
  • …
  • 8
  • 9
  • 10
  • 11
  • 12
  • …
  • 26
  • Next Page »
  • Facebook
  • Instagram
  • Pinterest
  • RSS
  • Twitter

Popular Posts

Shop My Favorites

Keep In Touch

Bucket Lists

ARCHIVES

Archives


“One of the most emotionally stirring books I’ve ever read….a reminder that a mother’s love for her child is a powerful, eternal, unshakable force.”
Ree Drummond, The Pioneer Woman
  • Home
  • About this Blog
  • BLOG
  • BLOOM
  • Favorites
  • Parties
  • PRESS
  • CONTACT

Copyright © 2026 · Kelle Hampton & Enjoying the Small Things · All Rights Reserved