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.
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 favourite 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.
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 in 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 honour 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!”
“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.
Help Siblings Understand the Importance of Modeling Good Behaviour and Ignoring Bad Behaviour.
“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 behaviour, 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.
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.”
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.
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.
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.
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.
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.
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.
