Sibling Perspectives on Down Syndrome

Our pregnancy book focuses on how to tell siblings a child with Down syndrome is on the way, how to answer their questions, and how to find resources. The book includes suggestions for wonderful films, books, and support groups to help you through that process.

Our Resources

See also: Preparing Your Other Children chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

More Articles/Resources

There are also a number of blogs that you might find interesting as you explore the feelings of siblings:

“How I Learned Unconditional Love” by Adriana Moniz. Adriana candidly details the shock and sorrow of learning about her new brother’s Down syndrome diagnosis when she was 13. Similar to the growth so many parents experience, Adriana’s perspectives shift, and she reflects on her love for her brother and how that prepared her for motherhood.

“What siblings without Down syndrome are thinking” by Maureen Wallace includes an interview with Dr. Brian Skotko about sibling relationships, most common questions from siblings, and tips for parents.

Parent/Sibling Quotes

Reflections from parents and siblings about growing up with a brother or sister with Down syndrome:

From Sarah, describing the relationships between her three teenagers, including a son, Adam, with Down syndrome:

One of my first concerns when Adam was born and diagnosed with Down syndrome was how this would affect Rachel, who was three at the time. In the short term, I found it didn’t really affect her or their relationship much at all.

Now that Adam is the middle of our three teenagers, I have a clearer picture of the impact. In our house, the impact hasn’t been very big. Occasionally Rachel or John believe that Adam has received special treatment if the consequences he receives for misbehavior are different. What I try to point out is that the consequences are different for each of them because they each learn differently and are motivated by different things.

I have been able to have serious conversations with each of them at times, and they do sometimes have questions or concerns. Most of the time, they act as though Down syndrome isn’t an issue for them, only for me.

Several years ago my husband and I were providing support to new parents who were grieving the fact that their new daughter has Down syndrome. After a few months, the mother told me that they would like to meet our kids, to see what their relationships were like. So, I invited them all over to our house for pizza. When I told my kids about this, they weren’t excited because there wouldn’t be kids old enough to play with. Rachel was probably 12 or 13 at the time, so I explained that they wanted to see if Adam having Down syndrome made a difference in their relationship. She told me, “No, I hate both my brothers equally.” Not the warmest or most pleasant sentiment, but there was a truth in there buried under the feigned animosity. The truth was that the relationships between siblings are complicated and sometimes messy but in our house, Down syndrome isn’t a big factor.

I will be interested to see if or how this changes as our kids grow up. My guess is that it will change in some ways but I am optimistic that they will all appreciate and enjoy one another more once they aren’t under the same room, as seems to happen with most siblings.

From Amy, talking about how her older daughter’s reaction to a sibling with Down syndrome:

One of my first fears when we were diagnosed prenatally was that I wouldn’t have enough time anymore with my older daughter, that our life would be dramatically different, that she would resent her little sister, that my kids wouldn’t have that “normal” sibling relationship.

In fact, my older daughter was such a good sister from day one! She was one of those little “mommies,” and she took care of her little sister with such pride. My girls are 3 years apart (almost to the day), and they are very close. They have sleepovers, bake together, share play dates, watch movies together, etc. They are also their own individual selves, and we do try to let each of them shine on their own. My older daughter is 10 now, and delving into that not-so-wonderful preteen existence that can be marked by feelings of insecurity, adults not understanding them, etc. She’s going through some typical independence-building stuff, but even so, she’s not more resentful of her little sister than I think she would be if she didn’t have Down syndrome. Most times, she’s incredibly patient and caring with her.

From Elizabeth, describing her experience having an older sister with Down syndrome:
My older sister has Down Syndrome. She is the single most influential person in my life. In fact, she inspired my husband and I to adopt a baby with Down Syndrome. I firmly believe that our future childrens’ lives will be forever enhanced and enlightened because of their big sister – just as mine was. I blog about our experiences here:
http://confessionsofthechromosomallyenhanced.blogspot.com/

From Megan, talking about her 60-year-old brother with Down syndrome:

My 60 year old Down Syndrome brother was the first-born in our family. He lives with one of our sisters (also his guardian) a few blocks from me. And other siblings and parents are within about a half-hour drive. (And still others are much farther away).

We seem to experience little of the “sibling” relationship. Even with my sisters and other brother, our relationships might be first due to our family bloodlines, but our interactions are driven by mutual interests, experience, and care.

My brother Andy falls into this category as much as any other siblings.

Of course, there are the additional responsibilities for his care, and his full engagement with family and community. And it IS additional responsibility, particularly for my sister and her husband (his primary caregivers) who make sure that he is not alone for extended periods, and ensure his meals, etc. But he keeps us focused on the important things in life – being together, sharing in chores and shopping and eating out, enjoying family birthday parties and holiday celebrations and going to his annual awards banquets!

They say that “It takes a Village” and indeed Andy has a network of close family who pick him up after a recreational program, bring him to the doctor for a regular checkup, decide to have an upside-down-meal (dessert first!), go jet-skiing at a friend’s house, inflate the tires on his tricycle, etc.

His presence in my life is a gift, as much as any child or other incredibly special person is or could be. I grew up learning to accommodate other people not by going out of my way but by realizing that the norm is a mid-point, not a requirement.

A most humbling moment in my life was when I was talking with a friend of mine who’s right arm was in a sling. I introduced my brother, who reached out to shake hands — with his left hand!

Yes, he is a gift to us, every day, even as we in our 50’s. And I’m fortunate enough that our lives are very connected, and I get to enjoy his presence in my life many times each day!

From Nancy, describing the interactions between her four girls, including the youngest who has Down syndrome — and a letter of support she received from a friend who has an adult brother with Down syndrome:

When we learned of Gabby’s diagnosis, my husband was very worried about our other children. This came as a surprise to me. I had known families with children with Down syndrome, and the kids always seemed fine. It honestly never occurred to me to be worried. After talking with so many expectant parents, I have seen that this is not only a common concern — but a major one.

My husband has quite a different impression now, influenced mostly by the fact that our children fight like cats and dogs with each other, but are uniformly supportive, loving, and delighted when it comes to Gabby. Perhaps influenced by birth order, perhaps by that extra chromosome, their interactions with her have set his mind at ease.

I did receive a wonderful letter when I was pregnant from a dear friend from law school which I will share:

11/04
Dear Nancy,
I just wanted to reach out to you to tell you how much you have been on my mind. . . .

Your new daughter will add a special dimension to your lives . . . . Having my brother in my life made me who I am – it straightens out any question of priorities. You appreciate the smallest of life’s beauty as the miracles they are. You become thankful for every day. Sam, Maria, and Elena will protect their little sister and learn about compassion and loyalty in ways you could not foresee. My brother has been my compass of my behavior my entire life.

I love you dearly and I hope you know that I will be there for you in any way I can.

Love,
Melanie

From Stephanie, describing how her two younger daughters have learned from their older brother who has Down syndrome:

My son with Down syndrome is my oldest, so the evolution of learning about Down syndrome has been more of an awakening for my daughters. It’s actually been pretty wonderful because growing up amidst many different children with disabilities has just been reality for them, and they have learned to be so much more accepting of diversity in all its forms. They see names and faces rather than labels, which is a wonderful life lesson that can take other people much longer to learn.

From Angel, talking about her son with Down syndrome who is the middle child between an older sister and younger brother:

I worried a lot about this at the beginning, but not so much now (I have a typical 7 and 1 year old, and a 3 year old with Down syndrome). My 7-year-old daughter just wishes she had a sister! Otherwise, she really isn’t overly impacted by the Down syndrome. She loves her brothers to pieces.

She does understand her brother with Down syndrome needs extra help sometimes, but she is his biggest cheerleader. We are careful to give her extra attention because our 3-year-old does require a bit more sometimes, but I think you need to balance this in any sibling setting.

I think having a sibling with Down syndrome will impact her life in a good way as long as we continue to keep things balanced! She will have a great understanding of special needs, and that we are all human beings and deserving of respect and love no matter what differences we may have.

We did tell her early on about Down syndrome and continue to explain it to her as she gets older and more aware of what that means. I don’t want her to think of her brother as ‘different’, but I also want her to understand and not to be blindsided when one of her friends asks a question about her brother, etc.

From Karyn, describing the relationships between her four children, including the youngest who has Down syndrome:

My daughter with Down syndrome is now 5, She has siblings aged 12, 14 and 21. We told all of them about her having Down syndrome when we were told, which was during my pregnancy. None of us really knew much about Down syndrome ,so it was quite an abstract concept until she was actually born.

For the first few months it was her heart that all of us focused on because she needed surgery. After that, she was just like any other baby mostly. We have all learned together, but I have to say that the other kids have been the most effective “therapists.” There are times when their baby sister annoys them, but it isn’t because she has Down syndrome. They all love each other and fight with each other like any siblings.

My eldest left home about a year after my youngest was born to work as a riding instructor. She was teaching several kids with Down syndrome and kept telling me how awesome they were. Those kids are some of her favorite students.

All my kids unconditionally adore my youngest, and she adores them. They are fantastic advocates, and my 14 year old has been inspired to become a pediatrician.

The kids have been hounding us to start fostering again (we did this many years ago) and they are all saying “wouldn’t it be cool if we get a kid with Down syndrome!”.

From Patti, talking about her child with Down syndrome in a large family:

Our Lily is the youngest of ten, and she is adored by her older siblings! The initial shock of her diagnosis was very painful. I blogged about it here:
http://babynumber10.blogspot.com/p/birth-story-part-2.html
However, we have found that kids are resilient, and I can say that they have never shed a tear over Lily having Down syndrome since that first day!

From Sherri, describing how she told her older children about their sister’s diagnosis:

We worried a lot about telling our then 12 and 10 year old sons about our daughter’s diagnosis at 5 days old. We were advised to tell them that she would learn things a little slower than other children. There was a Buddy Walk they attended when she was less than two weeks old, which we were worried about because they hadn’t been around many differently-abled people, but they were fine. It seems that because they were older, they were able to process her diagnosis. We had always been a open-minded family who talked through our feelings, which helped. Our third child was 2 when she was born and has been through therapy sessions and doctor’s appointments more than the older two. He treats her like any other big brother treats their little sister and has provided her with a typical sibling experience while providing the best PT possible. We are excited and proud of all our children and believe this road less traveled will make a mark on their lives for the better with experiences that will expand their level of acceptance.

From Sue, discussing how she told her older children about their baby brother’s diagnosis and their relationships years later:

We worried obsessively about how to tell our older children after Jake’s birth. At ages 3 1/2, 8 and 10, our kids weren’t old enough to understand everything but old enough to know that something was different. It turned out that we worried over nothing. We explained it as positively as possible (we were really shook up still) and kids’ reaction was…so? They love him for just who he is, and we really don’t worry about the Ds too much day to day. Their immediate love for Jake was immensely healing for my husband and me.

Now 7, my daughter is probably the most involved sibling as she has watched the therapies and interacts with him the most. She knows about Down syndrome but doesn’t seem to be affected by it. My older boys are now in middle school and are sensitive to others. They respect other people’s differences better than most. They do struggle with some of the middle school issues especially regarding the “r-word.” It takes maturity and courage to confront their peers and tell them how that word makes them feel and to ask them not use it.

We live in a smaller community and everyone has been very accepting of Jake. Kids are over all the time and enjoy playing with him.