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. We suggest some wonderful books, but we have learned about some other inspiring resources.
I had a chance to watch the movie Deedah tonight, a short film narrated by seven year old Charlotte May about her brother Jonathon who has Down syndrome. Without pretense or affectation, Charlotte forthrightly answers questions about Jonathon, including love, bullying, uniqueness, delays, and humor. It may be a useful way to illustrate the future for your other children. It is also perfect for class presentations for Down Syndrome Awareness Month (October) or World Down Syndrome Day (March 21).
If you have teenagers at home, it may be helpful to read “How I Learned Unconditional Love” by blog writer 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.
Please let us know of any other useful sibling resources, or let us know your reflections on sibling relationships. If you are an expectant parent, feel free to share your questions or concerns.
Tags: Adriana Moniz, Brooke May, Charlotte May, Deedah, down syndrome, down syndrome pregnancy, down syndrome siblings, downsyndromepregnancy.org, Jonathan May
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 DS, 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
Thanks for the reference to the Deedah DVD. I watched the trailer on youtube and immediately ordered the full video. I look forward to watching it. I expect my son and my daughter (who happens to have Down syndrome) will get a kick out of it.
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.
http://www.youtube.com/user/downsyndromesibbook
I worried a lot about this before Violette was born, and a bit for a while after she was born. The above videos are made by siblings of people with Down syndrome. I really liked the book that they refer to in the video, and let my 10 year old read it. The authors are fantastic examples of what siblings can do, and how they feel and love their sibling with Down syndrome, but also acknowledge some of the difficult feelings they had and how they and other siblings dealt with similar issues.
My son with Down syndrome is the middle of our three children, so we’ve had the experience of watching and guiding the learning process for both an older and a younger sibling. I, too, worried about sibling effects when Adam was born but so far, these haven’t been big issues at all. The relationships my kids have with each other aren’t smooth or especially sweet, but they’re all adolescents right now so maybe that’s not to be expected! I can tell you that Adam’s Down syndrome hasn’t really been a factor in their relationships at all so far. As my daughter, our oldest, once put it while in a snit, “I hate both my brothers equally. Down syndrome doesn’t have anything to do with it!” Fortunately, she doesn’t really hate them, she was just being a moody teenager. I have found that the best way to help them learn what they need about Down syndrome is to do it a little at a time as things come up.
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 Ds. She loves her brothers to pieces.
She does understand her brother with Ds 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 Ds 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…
My daughter with DS is now 5, She has siblings aged 12, 14 and 21. We told all of them about her having DS when we were told which was during my pregnancy. None of us really knew much about DS 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 but 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 DS. 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 DS and kept telling me how awesome they were. Those kids are some of her favourite 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 DS!”.
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 Lilyhaving ds since that first day!
We worried a lot about telling our then 12 and 10 year old sons about our daughter’s DX 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 and 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 excited and proud our 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.
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 I.
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.
I forgot about this resource! Sue Levine had sent this message out months ago:
Sue Levine and Dr. Brian Skotko’s talk: “What Your Other Children Are Thinking” was recently filmed at Boston Children’s Hospital. The video of our presentation is available for viewing on the Children’s Hospital Boston website as part of the Alan Crocker Lecture Series. Click on this link to watch the talk: http://breezemsprod2.tch.harvard.edu/p74242357/. The talk is an hour in length….an abbreviated version of what we usually do.