Tuesday, September 21, 2010

Raising Your Other Children: Siblings of a Child with Special Needs

I think one of the many difficult things in having a child ... or, ahem, children ... with special needs is appropriately discussing their differences with their siblings. I remember wondering, "When is the right time to discuss Down syndrome with Mason?" I mean, we have always just talked openly about how the girls learn slower than he does, but as far as really getting to the core of the subject ... well, I just wasn't sure how to approach it.


So then, one day ... I just asked him, "Mason, do you know what Down syndrome is? Do you know that both of the girls have Down syndrome?" I was all feeling empowered, like we were going to have this big heart to heart ... and quite frankly, he could have cared less ... he was mostly interested in knowing when he could get back to his video game. This really was a lesson to me that it really doesn't matter what it is called ... he still loves his sisters the same. We still talk about it openly and I guess he will ask more questions when he is ready.

Last year I attended a conference in which I was able to hear Dr. Brian Skotko do a sibling workshop. I just came across this list of great tips to remember when dealing with siblings of a child with special needs, as written by Sue Levine and Dr. Skotko ...

1. Be open and honest, explaining Down syndrome as early as
possible. Encourage other children to ask questions; answer them on
their level as honestly as possible. But don’t wait for siblings to ask
questions. Bring up the topic routinely in conversation.

2. Allow brothers and sisters to express negative feelings.
Acknowledge the fact that sometimes it is hard to be a brother or sister to
someone with a disability And don’t expect siblings to be saints.

3. Recognize the difficult moments that brothers and sisters may be
experiencing. As brothers and sisters grow up, they often begin to
realize that not everyone in society shares their family’s beliefs and
values. Recognize situations that may be potentially embarrassing or
stressful and do what you can to help minimize the difficulty.

4. Limit caregiving responsibilities. Children need to be children. Allow
them to be brothers and sisters, rather than becoming an extra parent.
Your children with disabilities also benefit from having siblings rather than
a family full of parents.

5. Recognize the individuality and uniqueness of each child in the
family. Be sure to point out what makes your children special; they want
to know that you notice them, too. Celebrate their accomplishments and
schedule special time with each of your children.

6. Be fair. Listen to both sides of the story and be certain to make sure
each child has responsibilities appropriate to their level of ability

7. Take advantage of supports for siblings. Both local and national
groups have opportunities for siblings to meet each other. Such
experiences are often validating.

8. Encourage parents to access support for themselves. When parents
seek out support systems for themselves, they tend to be better equipped
for the journey.


  1. It's so funny that you posted this. I've been thinking a lot about this over the last day or two, mostly b/c our Buddy Walk is this Saturday and I'm curious how the boys (siblings ages 4&5) will be, so far their innocence hasn't let then notice Kaitlyn's disability. We've decided to answer their questions as they come. We are signing with KT and just pointing out the importance of giving her a way to communicate with us until she can talk. I've been thinking about what we will say when they ask about Ds, or when we explain to them what it is. Will they make a connection this Saturday? I'm just going to pray God gives me the words, and that I keep it age appropriate, one question at a time!

  2. i have been thinking a lot about it too, we dont have more kids, but we have many friends with kids, and also kids frm church who i know some day they will start asking questions, and i hope they come to me and ask me and hope they still care and love Elias.

    One of his best friends who is 8 has been wonderging why in our blog says too much down syndrome, and why Elias' picture is at a DS brochure, but she hasnt asked it to me, just to her mom

  3. My 4 yr old was looking through a box of old baby shower cards. In the box was also her hospital ID bracelet. She has seen several of Max's laying around the house, so she knew what it was, but was suprised it was hers. She said, "Oh, cause I was Down syndrome too?" Yeah - she doesn't quite get it yet!

  4. What a great post! I try to bring it up often for my older boys (6 and 4) and my oldest one gets it more, but even though he knows Brooke needs more help with the therapist and we have to work extra hard, he loves her just the same as his other siblings. And it's a hard balance, I want it known and out there for us to talk about, but at the same time for the DS not to be a big deal, after all-she's just the same as us...
    I guess I haven't really figured it out yet..

  5. Interesting list. Reading it is bringing out some guilty feelings in me. #8 is the most important, because without it things like #4 can be very hard. I have 4 kids and sometimes they just have to look after each other.

  6. Thanks so much for sharing! I was just thinking about this the other day as well. Like I want our older daughter to be familiar with other kids with Ds- but I also don't necessarily want to single out the trait as the most important thing about Abby. When I read number 5 it had me thinking that I also want to be sure to note things about Abby that are special that don't have anything to do with the Ds too.

  7. This is an awesome post. Thank you very much for sharing!

  8. These are really great tips -- thanks for sharing. Our kids know all about Ds and talk about it to their classmates whenever it comes up. They're very comfortable talking about it, even Greta at age 5, and the 2 oldest want to go to the NDSC brother sister conference next year. #4 is one that I try to make sure they have lots of fun time with John Michael and only occasionally have to watch him for me so I can get something done or tend to the baby. I love the photo. Mason really is a character and the girls are GORGEOUS!

  9. I wonder about this also! When I first received the news of our Elijah's diagnosis, I first worried about how it would (negatively??) affect our firstborn. Luckily, I found a lot of great, reassuring and uplifting information about how siblings fare. Thanks for the tips- they are GREAT reminders!!