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Am I Doing It Right?: Special Needs and Siblings

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.

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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.

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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!”

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“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.

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

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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. 😮)

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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.”

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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.

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 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.

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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.

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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.

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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.

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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.

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Comments

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  1. This is a beautiful post.

  2. Thank you for writing this! I am a sibling of someone with autism (as well as 2 typical sibs) and it means a lot to see this addressed. There are unique challenges that come with special needs sibs and it’s a complicated topic. It sounds like you are doing the right stuff! And it is an ongoing, life-long challenge. Siblings are the ones carrying the torch even past parents so it’s important to make sure we all feel loved and valued! Also you should check out SibShops. It’s a national organization that caters specifically to siblings of people with disabilities. I’m active in the adult support group SibNet but sibshops is catered to kids and teens. They do workshops and just fun activities and give kids a connection to other sibs which is so important!

  3. Great post! From what I can see, it looks like you are doing a great job. My oldest was born with spina bifida and uses a wheelchair. While we only have 2 daughters we always wanted to make sure they both felt equally loved. That meant always treating them fairly, but not equally. For me, whether you have children with special needs or not, they should all be treated fairly. Playing favorites is NEVER ok. Meeting children at their level, yet being aware of their limitations is a great gift to them. My daughters are 31 and 26 now and have always had a great relationship which I’m so proud and thankful for.

  4. Beautiful and encouraging. Thank you.

  5. Such a lovely post. Thank you for being so frank with your struggles, and successes. My husband and I have not started having kids yet but I know when we do, no matter the dynamics of our family, your family will be a source of inspiration.

  6. Laura snyder says:

    This is so helpful! I often wonder how I can make Eden feel just as loved and cherished as michael

    • Laura snyder says:

      I posted that before I was finished. Both of my children are small. I advocate for Mikey a lot and even though Eden is an infant, I’m always trying to think of ways that I can include her in the future. Thank you for this!

  7. Love this so much! 💕

  8. Hi Kelle,
    Your timing is everything! My oldest is 13 and she loves her little sister Maggie (ds) who is 10 like no other sister can. Recently though some challenges have kicked in. Maggie wants to be with her sister all the time and do whatever her sister is doing. Sometimes it works, but lately patience has been tested and attitudes have emerged. When my oldest has friends over Maggie wants to be right in the middle of it. They will let her hangout for awhile, but then boot her out and tears start coming! Maggie finds other things to do, but she becomes mad and then turns to annoying her sister and maybe even find some inappropriate behaviors that leave my oldest embarrassed. Some of my oldest daughters friends see Maggie as their own little sister, but a new middle school and new friends my oldest now feels a little embarrassed, not by the Down syndrome, but things Maggie will say (although learned from older sister) and she might throw things or spit her drink. It was easier when they were younger. My oldest is busy, lots of sleepovers and hangouts, things Maggie doesn’t have. It’s just a new chapter and we will figure it out, but sometimes it’s hard to find the right balance.

    • As a sibling of a sister with Ds, I’d like to offer an insiders perspective: as a parent, you lived a decent portion of your life and then were invited into this world. Myself and your older daughter were born into it. For as long as I can remember I’ve had a Sister With Down syndrome. I do love her unconditionally, but growing up I realized that so much of my life was consumed with my sister and advocating for her that I didn’t have an identity outside of being a Downs Sister. Essentially, I felt as though I was living in her shadow and needed to distance myself for a little while to carve out my own identity. In my experience, what your daughter is going through is pretty normal.

  9. Lovely as always!❤️

  10. My 7 year old daughter passed the computer screen while I had this blog post up. “What is a birth story? That looks cute! Is Nella the baby or the mom?” I am pregnant and her interest in babies is piqued. I told her a bit about your birth story with Nella and Down syndrome. A few minutes later, while eating lunch Norah asked me “In heaven, will she have Down syndrome?”
    This gave me an opportunity to explain that it isn’t like cancer. Cancer is something nobody wants – it is a disease that attacks your body. Down syndrome is a part of who you are. Something you are born with. I told her that I believe in heaven, God will reveal to us how He created us to be. The most perfect and beautiful version of ourselves. We talked about how it makes Nella different, but also thanks to reading Ruby’s Rainbows posts – I was able to tell her how people with Down syndrome are thriving and living lives accomplishing goals I know my daughter would admire.
    I return to your blog for many reasons – one of which is this – you weave challenges with beauty and that makes life less scary. Your photos and words are like a balm to the hurts that we all face. Thank you for writing!
    (And if you have any insight in how I could add to the discussion with my daughter, I’d be happy to receive it.)

  11. I remember following Archie’s adoption story – thanks for a great article and beautiful picture of him & his sister!

  12. thanks for this Kelle. I have a twin sister with cerebal palsy, epilepsy and who is on the autism spectrum. So much of what you have said here resonates with me. In fact I burst into tears when I read ‘siblings have special needs too’ which brought up feelings I didn’t realise I had. I love her fiercely but have often felt overwhelmed with the burden of guilt, both at being the ‘lucky’ one and for resenting the parenting I missed out on. The way you continue to approach parenting your three beautiful, unique children has been inspirational to me for a long time as I work out the best path for my two daughters. Thank you x

  13. Oh man, this is lovely. Your whole family is doing a great job. Keep on keeping on, and take no prisoners.

  14. My kiddos (in particular, my 3 year old terror middle child) really needed me to read this today. Thank you for sharing

  15. Lovely. You’re all amazing!

  16. This is beautiful Kelle. You have such a gift for mothering and knowing the right way to handle certain situations. I love your wording for future discussions regarding Nella and Lainey. Letting her know that her struggles or concerns don’t diminish her love that she feels for her sister. I know there are times when Morgan’s siblings feel embarrassed about her random noises or socially inappropriate behavior and should know that it’s okay to feel those feelings and that doesn’t mean they love Morgan less. There are times I feel those same feelings even though I love Morgan to the moon and back. I just wish she didn’t have to deal with certain behaviors that can isolate her or make her the attention of everyone in the room.

    Also I learned at a DS convention that “play” for our children many times is not play at all but processing. When Morgan “plays” with her dolls and barbies she isn’t really playing with them the way her siblings may want to play. She is using the dolls as a vehicle to process her thoughts and day and when someone else wants to be involved that processing has to stop. It’s like how we can get lost in daydreaming or our thoughts and it takes us awhile to leave that thought and interact with an actual conversation. Not sure if that makes sense but it might help Lainey if she understands that Nella is thinking out loud and uses her barbies to help her process her thoughts and isn’t able to do that when others are involved.

    Thanks for letting us be a part of this blog post. I know I am still learning as I go but somehow it all seems to work itself out even when I make big mistakes and things don’t go as I planned.

    xo

    • I never really thought of “play” as processing but you nailed it. My daughters have had this same issue recently and my older daughter gets upset and cries that her sister doesn’t love her because she doesn’t want to play with her. I need to explain this to her, this will make her feel better! Thanks!

  17. This post was beautiful, so often your words make me cry in a good way. I love Hadley’s essay about her dream. I dream of a world that is inclusive for the elderly, rather than institutionalizing them. I read a book entitled the Age of Dignity by Ai-Jen Poo and I loved the creative ideas other countries are adopting to form inclusive communities that respect the older and wiser generations. It’s something I think we’ve lost in the culture of this country. When you talk about DS and how awareness has led to a lack of inhumanely institutionalizing these individuals it gives me such hope. It gives me hope when you talk about siblings who care and value and see the light those around them. And I even loved your comment about “be kind to yourself”… I’m a momma in need of that reminder because I am in some challenging stages with my kids and don’t always have the right words to say. Thanks for this post, Kelle.

  18. I admire your honesty in this post. I particularly identified with the validation of feelings point. My mother is/was a fiercely loyal person, but she was hard to approach sometimes, she didn’t usually validate my feelings and it did make me not tell her anything for fear she would dismiss or (worse) overreact to my worries, looking for someone or something to blame instead of just saying, at least initially: “I hear you… that must have been hard”.

  19. In the beginning, I never thought about my other kids and their needs too with having a child with DS in our family. I get it now, and I SO appreciate this post and all the excellent advice! 😊

  20. Thank you so much for this! It’s so what I needed right now. I have 4 kids. My youngest has autism and is non verbal and this was so helpful for me in the stage we are at right now.

  21. Almost 8 months ago, we adopted our spunky, spirited, affectionate, amazing 5-year-old daughter from Armenia. Guyana has many special needs, and our oldest (Jack, age 9) has really bonded with her. I started a Facebook page called Guyana’s Groupies to keep everyone updated on her medical care and progress. Jack was watching me post an update and wanted to know what a groupie was. I told him it was like having fans or cheerleaders. He got very quiet and in a timid voice said, “So, Mom, do I have any? Do you have a group called Jack’s Groupies?”

    This is hard.

  22. Thank you for these ideas… especially those related to giving our kids space to have feelings about having and loving a sibling with special needs and empowering them to advocate for them.

    My son has autism but I struggle to know how to tell him- and know when he’s ready. This prevents me from having conversations that I think will help his younger siblings understand him though. I know autism can be different from other special needs because it is often diagnosed later. Do you or any of your contributors have any suggestions?

    Thanks so much for your thoughtful and always loving insight. :)

  23. thank you so much for this post. this has been on my heart a lot lately. we adopted our son a little over a year ago. he was almost three when we brought him home. he has medical special needs, is another race than everyone else in our home, and is a “twin” with my biological daughter who is 10 days younger than him. we have had so many challenges, lots of overnights in the hospital, helping the “twins” form a bond (which they have amazingly!), and also helping our older two adjust. there are days where it is just SO HARD and i feel like i am doing everything wrong. and then there are days when i hear my kids tell the story of how their brother was adopted and i realize they are so much wiser and more compassionate than i give them credit for.

  24. Hello Kelle

    As always I love your writing , and I think more and more about being inclusive when I read your blog posts. Today I took my toddler to a park called “magical bridge” the whole concept of which is “where everyone can play”. One thing I do feel so you should include the sibling relationships with your step children and Nella in this – they are also her siblings…and love her so much from what I remember in the beginning when you did write about them a lot.thanks!

  25. Thank you so much for this post and all the reminders in it! Eloquent as usual :-)

  26. I have a family member with DS and I have a point I’d like to make. I really hope you approve this comment because I feel like it’s a valuable point of view about siblings and DS.

    This family member is now an adult and low-mild functioning. She is in her 30s and has an older brother who is married with children. She is very possessive over him and jealous of his wife and children. This causes familial strife because (like the story mentioned about about people with DS getting stuck on some bad behaviors) she tends to be very disrespectful to the wife especially, glares at her, insists that her brother belongs to her, ect. She has to be reassured repeatedly that he loves her (actually, she does this with everyone) and when he says yes she attempts to “rub it in the wife’s face” even though there is no issue on the wife’s part. It is an unpleasant situation and no amount of talking, reprimanding, ignoring, has changed a thing. So what has happened is that they just do not visit with her often anymore. Also, what is strange is she also adores the wife and trusts her with information and secrets (made up secrets) that she doesn’t share with anyone else. So it’s an odd thing they’ve got going.

    Anyway, the point is that she is obsessive over him because his mother allowed him to do most of her care growing up. She became overly dependent upon him so when he grew up, got married, and she stayed behind…I can only imagine it was hurtful and it’s what lead to her jealousy issues. I guess what I’m getting at is while sibling relationships are SUPER special and important…please be careful not to force them together in such a way that Nella becomes unhealthily attached. One day Lainey and Dash may move out and get married and move far away, and Nella may very well not(not that she COULDN’T…she could! But it seems more likely for those with DS to not do those things).

    Just something to think about, and please don’t think I’m insinuating that you are making Nella too attached…just sharing something that COULD happen that would hurt everyone down the line. <3

  27. To answer your question…YES, you are doing it right!

  28. I have 3 boys…one with autism.
    While I do my best to help them when situations get out of hand, I try to let them figure out how to problem solve themselves. I also try not to force their relationships either. Like your children, my two youngest get along far better than the oldest and youngest. I try to be cognizant that they have different personalities and may never get along and play together like I’d like them to. Like me, I have a far closer and better relationship with my younger sister than I do my older sister.
    I don’t think there is a right and wrong.

  29. This is such a wonderful post with great information / ideas. I have an 8 year old boy with DS (Ashton) and he has 3 sisters (11,10 and 6) They all have a unique way of listening to Ashton and helping him. They don’t go to the same school due to his program but they help him at home and in social settings. They are extremely patient with him, but they do sometimes get frustrated with him and they express this a lot. I love that they can talk with me about it and ask questions. They enjoy the Buddy Walks and they even do an art sale of their own art work (they are quite the artists) and sell it to raise money for Special Olympics.

  30. Your story is so inspiring Kelle, and you have a lovely family. You’re doing a great job in raising your beautiful kids. Keep up the great work.

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