How To Talk With Siblings About Down Syndrome
How do I tell my children their sibling has Down syndrome?
How do I explain Down syndrome in a way they can understand?
Hey Mama Bears, full disclosure here. There are affiliate links in this post so if you click on the link and buy the product I will earn a small commission. Now that we’re clear on that let’s get back to rocking life with special needs!
Many parents of children with Down syndrome wrestle with these questions and sometimes delay having important conversations.
Before we dive deeper remember Mama Bears, as with anything on Twenty One Dandelions you have to decide what’s best for you, your child, and your family.
I’m going to share with you my thoughts and tips on how to go about it. You can decide if it resonates.
Why It’s Important To Talk About Down Syndrome To Siblings
Why It’s Important To Talk About Down Syndrome To Siblings Reason #1: Trust
Trust is an important foundation in any healthy relationship, including a relationship between a parent and a child. It’s crucial our children trust us and that we maintain that trust. And remember, children are perceptive at any age.
Bringing home a baby with Down syndrome is a big change and eventually, if not right away, they’re going to sense something is different.
They may notice the baby has a lot of doctor’s appointments, therapy visits, or hospitalizations. They may take note of how others respond to their baby brother or sister. They may notice their sibling isn’t doing things other babies are doing and wonder why. They may even pick up on your own grief and stress over the diagnosis.
Pretending nothing is different isn’t a good strategy.
Being open and honest about their sibling having Down syndrome maintains trust between you and your children which is a good parental strategy.
It doesn’t have to be some big monumental discussion. You could choose a bedtime book with a main character who has Down syndrome and say you’re going to read a book about Hannah who has Down syndrome just like their little brother or sister. This may lead to more discussion or it may not.
If this sounds like a great idea you’ll want to check out my post Children’s Books About Down Syndrome where you’ll find plenty of good books!
Why It’s Important To Talk About Down Syndrome To Siblings Reason #2: Understanding
Talking about Down syndrome improves a sibling's understanding and the challenges kids with Down syndrome face on a daily basis. It facilitates empathy and compassion and an understanding that people can be different and that’s not something to be scared of.
Why It’s Important To Talk About Down Syndrome To Siblings Reason #3: The Sibling Relationship
I think it’s safe to say we want our families to be close and supportive. We strive for our homes to be a safe place to land at the end of the day where love and kindness prevail.
Being open and honest about a sibling being born with Down syndrome can help strengthen the relationship. They’ll know why their brother or sister may struggle with certain tasks and be more patient. When a parent is gone all day taking their brother or sister to various doctor and therapy appointments they understand why that parent is spending so much time with them. Knowing their sibling has Down syndrome will help develop their capacity for empathy, kindness, and resilience.
Tips When Talking About Down Syndrome To Siblings
Tip #1: Don’t Wait.
Max is our oldest child so his brother and sister have never known a life that hasn’t included a brother with Down syndrome. I don’t know if that has made things easier or not.
I do know we’ve always been very open and honest about Max’s diagnosis. It was never made out to be a big thing. We approached it as something that made Max…well Max. He has blue eyes, straight hair, and Down syndrome.
I do feel if Max would have been the youngest rather than the oldest we would have told his siblings right away because of the reasons I discussed previously…trust, understanding, and the sibling relationship.
If I had to imagine how we would have gone about it I think when they first met Max we’d say something like “Come meet your new brother Max. He’s so tiny huh? Look at how much hair he has (Max was born with a full head of hair), see how small his fingernails are, and he was born with Down syndrome.”
If they asked what Down syndrome is I hope I’d say something like “Did you know that everyone is made up of these tiny things called cells and inside each cell are chromosomes which are basically instructions of how we’re going to be made. Think of them like a recipe of how to make a person. Most people have 23 pairs of chromosomes in each cell but people with Down syndrome have an extra chromosome.”
Tip #2: Be Calm And Be Positive
When telling typically developing siblings their brother or sister was born with Down syndrome it’s important to remember your children are going to take their cues from you so it’s important to be calm and positive.
I understand there are a lot of emotions surrounding having a new child with Down syndrome. I have been very open about grieving Max’s diagnosis. In this moment though try not to cry. You don’t want your other children to be scared by the fact their brother or sister was born with Ds and you don’t want them to think it’s a bad thing.
Tip #3: Be Open And Use Appropriate Terminology
Be open and honest about the diagnosis and use appropriate terminology based on their age. Let them know that Down syndrome is something you are born with and you cannot “catch it” like a cold.
If they're of school age you could talk about chromosomes. There are several books you can read together that help explain Ds and chromosomes in a way that is easy to understand and I would recommend this. It’s important to acknowledge their brother or sister will do a lot of the same things they do but it may take them a bit longer to learn how to do them.
Likely this is not a one and done conversation. Conversations around having a family member with Ds will evolve as they become older and they have life experiences that bring it into focus such as classmates asking why their sibling is different.
Tip #4: Acknowledge Their Feelings
There are a whole lot of emotions surrounding having a sibling with Down syndrome, both positive and not so positive. All are valid. All need to be acknowledged because it’s important to feel seen and heard…even if it’s hard.
Once again, this is not a one and done kind of thing. Over time feelings and worries will change. When siblings are young they may worry about other kids making fun of their brother or sister with Down syndrome. As they become older their worries may shift to the responsibility of taking care of an adult sibling with a disability.
These are important conversations to have as often as needed. Come up with a game plan! Brainstorm ideas or things that they can say if a classmate asks about their sibling with Ds or if someone is staring at them in the grocery store. Have a game plan for what’s going to happen when their sibling is an adult that may include an ABLE account, a special needs trust, etc.
Books For Siblings Of A Person With Down Syndrome
In this book we meet Angela who tells us about the great and not so great things about having a brother with Down Syndrome.
In this book Emma and her dad talk about all the things Emma will do with her little brother and how they have to adjust their expectations once they find out he’ll be born with Down Syndrome.
This book is written for teens who have a sibling with Down Syndrome. It’s a question & answer format tackling a broad range of their most common issues and concerns.
The Benefits Of Having A Sibling With Down Syndrome
In general, most siblings of a person with Down syndrome regard it in a positive manner. A study titled Living an Adult Life with a Sibling with Down Syndrome: Examining Siblings’ Personal and Professional Choices found that having a sibling with Ds had a generally positive impact on people’s values and personal and professional choices. Siblings of people with Down syndrome tend to have increased empathy, compassion, maturity, and resilience. I would also argue they have better advocacy skills.
I do see these findings reflected in our own lives.
My two younger kids are the ones who are asked to become “student helpers” and they’re not afraid to advocate for others or themselves. They each have a good idea of who they are and what they stand for. Typically they don’t “sweat the small stuff” like their peers because when you have a family member with special needs it changes your perspective.
So there you have it Mama Bears! I hope you found this post on how to talk to siblings about Down Syndrome helpful.
If you liked this post you may want to check out…
How To Talk To Your Child’s Class About Down Syndrome
Children’s Books About Down Syndrome
5 Tips To Manage Burn Out For The Mom Of A Child With Down Syndrome
Let’s rock this special life!
If you're looking for ways to connect then be sure to find me on Facebook and Pinterest! You can also become part of the Mama Bear Crew and join my email list. I’ll send you an email at least once a month AND you’ll get exclusive access to the Mama Bear Crew page which has an IEP goal bank, IEP glossary, and an About Me Medical page.
