Siblings & A Special Needs Diagnosis

By Taryn Lagonigro

One of my prevailing worries after finding out about Rhea’s Down syndrome diagnosis was for my other three girls. We were secure in our decision that WE could handle it, but we also have three other people who rely on us to look out for them. My first thoughts were all the negative things - I imagined people making fun of them for having a sister with special needs, I imagined how much of my time might be pulled away caring for her and I just overall manifested this negative experience for them in those early days of knowing. But what I have shifted my focus on over time is all of things they will gain from having a sibling with special needs, not the occasional negative thing.

Very early after the diagnosis, we made the decision to be very open with our older girls about their new sister. We did not want them to feel for a second that there was something to be ashamed or afraid of. We wanted them to be able to ask questions and for them to be part of the learning experience. I wanted to know what they wanted to know because maybe it would help me navigate things myself.

We read them age-appropriate books about Down syndrome and talked to them about their new sister. I should have realized that they would have a very kid-appropriate reaction to the whole thing. Their reaction made me wish that is how we all approached things in life, because neither of them thought this was a big deal. I know there is a lot more learning and questions to come, but for now they just love their sister for who she is!

Having Rhea join our family has fundamentally changed us all, and it has opened my eyes so much to the world around me. I hope that this all affects my older girls in positive ways, but we navigate everything as a family so that we can all grow and learn together. Here are some of the ways we have helped our girls navigate this new journey, but we would love to hear from some of you who may be further along than me!

1) Create a curious and inclusive household. This is the foundation! Encourage your kids to ask questions about people they are curious about, rather than telling them not to stare. For me personally, I would prefer someone come up and ask about Rhea than rush their child away, and I have encouraged my girls to do the same. Helping your children learn that there are all different kinds of people in the world will help normalize things more. Plus, maybe they will be more likely to pull up a chair next to a child who might be different than them then exclude them. By setting this foundation, having a sibling with special needs won’t seem like such a big deal to them.

2) Find age-appropriate books about inclusion, disabilities, and the specific diagnosis, if possible. I personally would never have known the right way to explain Rhea’s diagnosis to the range of ages that my kids are, so books helped me get there. These books had a way of inviting questions that I was then able to answer, and we always love reading books together!

3) Explain things! Kids are most scared of things that they do not understand. We have explained not only Down syndrome itself to my kids, but also why it is important for us to advocate for Rhea. I also explain why she needs therapy so that they understand why Rhea has all these appointments that they are not used to kids having. We encourage questions anytime and anywhere!

4) Celebrate! Make siblings a part of the celebrations. For us, that has been wearing crazy socks and blue and yellow on World Down Syndrome Day and making it a big party day! But maybe it’s taking everyone out for ice cream if your child hits a milestone that has been worked really hard on. By celebrating the wins and the diagnosis in general, it helps take the fear away from children and also helps them to not associate things in a negative way.

5) Include them in everything that they WANT to be included in! I specifically worded it that way because I never force my girls to partake in Rhea’s therapies, but they always know they can join in if they want to. Our therapists have been great about finding fun ways for them to help with Rhea’s exercises, which makes them part of the process AND the celebration. Plus, maybe they will be inspired to find a similar career someday!

6) Family first, diagnosis second! This is the most important one for me. I try to make sure that Rhea’s therapies and appointments do not take over our lives. I am realistic that there are three other people who need me as much as she does! I do not want the other girls to get resentful, so I make sure that my time is balanced as much as possible. But most importantly, I have let them just get to know and fall in love with Rhea as their little sister and not put a spotlight on things that may or may not be different about her. We have done that by treating Rhea like any other child as much as possible. Around our house, she’s just Rhea, not Rhea With Down Syndrome, and that’s exactly how I want her to be seen!

What has worked for you as you navigate having typical and special siblings? What are your hopes for all your kiddos’ relationships? Connect with us on Instagram and let us know!