Sharing a Special Needs Diagnosis with Siblings

As the mom of two girls born just 20 months apart, they are sharing many of life’s first experiences together.

When my youngest daughter Molly was born with Down syndrome, we were overcome with learning everything we could about this disorder and the challenges that were in her future.  It wasn’t until much later that I began to think about how we might explain Molly’s diagnosis to her older sister.

Maggie-and-Molly-McLaren-400x320

At three and a half years old, we haven’t told Maggie that her sister has a disability.  It is something that my husband and I talk about on a regular basis.  When do we tell her?  How?  It’s not that we are ashamed to tell her – because we certainly are not, but in our eyes… what’s the rush?

We want Molly to be included in as much as possible and for others to accept her, no matter the differences. Maggie knows her sister goes to a therapy sessions once a week, but around our house it’s just known as “Molly’s school”.  In fact, during the summer Maggie is included in the sessions too.  She loves going to her sister’s “school”.

I’m not sure how or when we will tell Maggie about her sister’s diagnosis.   We’ll cross the road of sharing Molly’s diagnosis when the time is right. Right now, I’m enjoying watching my girls grow up alongside one another. And at the moment, that’s what works for our family.

Whenever we decide to share the news, I don’t think it will change the way Maggie feels about her sister.  They share a bond that goes much deeper than the number of chromosomes.

 Are you a special needs parent?  How did you share the news of a diagnosis with other siblings?

Comments

  1. says

    First of all, your daughters are adorable! I think that is something a lot of people must struggle with. My older son has a congenital heart defect and my younger son just grew up hearing about it. At one point, he wanted to have heart surgery so we could celebrate his “Heart Day” too!

  2. says

    I think you’re doing a wonderful job teaching Maggie that it’s what’s inside a person that counts. She’ll probably bring it up on her own one day, but she’ll already know her sister is perfect just the way she is. <3

  3. says

    Carrie, you and are amazing! I hope you know that!

    When my Aunt Lisa was growing up with the rest of her nieces and nephews, (Only 5-7 years older, than some of us) we never once talked about what Down Syndrome was. She was included in everything we did, played right along side of us, and was one of the whole group! It wasnt until I was in my teen years, that she sat me down, and said “Do you know something? I look different than everyone else, but my heart is bigger than most, I just have more room to love.” So, it was never about telling the world Lisa had Down Syndrome, it was about inclusion and acceptance of who she was!

    I love this series, and thank you for spreading the love and awareness for Down Syndrome.

  4. Jessica says

    My sons are 5 years apart and my oldest has Autism. I struggle with when and how to tell my younger son about Autism. Right now he is only 19 months old so he just worships his older brother (I hope he always will!). I wonder if he will just understand about his big brother or will he need more? I worry about treating them both the same even though the oldest needs much more support. And will my little one (who shows no signs of autism at this point) feel left out or vice versa. Oh the joys of parenting. :)

  5. says

    At Maggie’s age, I don’t think she could comprehend what you say about Down Syndrome. She loves Molly and knows they’re sisters and that’s all that matters!

  6. says

    I’m sure you’ll find just the right time. Perhaps one day she’ll ask you a question which lends itself to the conversation. I can see why you’ve never felt the need to say a thing up until this point. Regardless, they’ll be pals forever! (Well, they may go through some sister strife in the teen years…don’t we all?) lol

  7. says

    Carrie as a parent I agree with you 100%, let them be kids. There is no need to rush growing up right. I also agree with Liz, one day Molly might just ask and then you will know it is the right time.

    As a sibling of someone who had a disability, I can not tell you when I found out. I don’t remember but I can tell you my mom did exactly what you are doing, she let us be sisters. While Nicole’s physical disability limited her in certain ways it did not limit us from being kids, we just sometimes had to do it a little differently. But I will say when Molly knows she will go into a very protective mode for her sister that is hard to explain. It is one that only us siblings know and understand. I assure you she will be an awesome sister even after but you already know that.

  8. says

    Hi there! Seems we have quite a lot in common, Carrie! I have two little guys, 15 months apart, 4 year-old is NT & 3 year-old has ASD. At the moment my boys are best friends, occasional fight over the iPad, but that’s about it, lol! I’m proud of how my oldest takes care of his little bro… speaking for him when people ask him questions, taking his hand and showing him where to go, teaching him how to play made-up games, and never complaining about waiting in the therapy lobby three times a week! I know he has no idea what Autism is, but one day he did ask, “Momma, why can’t him talk?” I started to tell him your brother has Autism & that everyone is special in their own way… just then his brother started to stare off & do his stimming movements to which my 4 year-old told me, “He sees stars!”… funny how I was trying to explain Autism to him while he was able to tell me in three words how special his little brother is! My boys make me so proud! 😀

  9. says

    Wow, I had never considered the explaining to siblings situation. I think your idea of waiting is fine, I know my oldest wouldn’t quite understand the situation even at 4 1/2 plus I don’t think he would need that explanation at this point if we were in the same situation. Brothers love each other, sisters love each other and at this age that is all that matters.

  10. says

    Carrie, I think this is SUCH a smart parenting move. What’s the rush in telling her? At this young age, there is nothing she needs to know about her sister’s disability. Like Karen said, loving each other & playing with each other at this age is all that matters. :)

  11. says

    Wow, you’re taking me back. I had an around 4 year old daughter when I told her her baby brother had Down syndrome. I can remember getting all worked up about it for weeks before I got the courage to tell her. I wondered how upset and disappointed she might be but I still felt the need to tell her. We read We’ll Paint the Octopus Red together and I told her. She just looked at me smiled and said “Okay, mom” and just kept playing. I’ll never forget it. I still get emotional thinking about it. My precious boy just turned twelve. Now I’m thinking about how I tell him he has Down syndrome.

  12. Beth says

    I always enjoy reading what you right. Thanks for sharing your journey!

    Our son who is 11 and has DS is 6-9 years younger than his sibs, so we had the conversation from day one. It worked out great for us, as they were never afraid to ask questions. We also made it clear that our expectations for him were no different than for them. Well, one day our daughter asked us when we would start punishing him for doing bad things like she had been punished. Well, that was a good call us on the carpet moment!

    Brian Skotko and Sue Levine have written and done workshops on the sibling issues. I went to one workshop and was very impressed with their use of research, psychology and plain common sense. They talked a lot about how our kids get their clues from us. If we seem uncomfortable with it, they will pick up on that. Open, natural conversation in teachable moments is best. For more info go to http://www.brianskotko.com/index.php/workshops?limitstart=0

    I’m confident you’ll find the right way and timing to talk with BOTH your daughters. It dawned on me when we were talking to our son’s first grade class and they asked if he knew he had Down syndrome that it was so much a normal part of our lives I never thought to ask him if he understood it. So I told them to ask him and he said “YES! And the Buddy Walk!” After that we became more intentional about giving him meaning to those words (“It may take you longer to learn something since you have Down syndrome, but you CAN do it, even if it takes twice as long!” and “Yep, sometimes you have to take a rest because you have Down syndrome and your muscles get tired more easily.”) Eventually it won’t be a big topic of discussion or concern. It just is part of what makes your daughter who she is. And part of what makes being her sibling wonderful too (it shapes all our lives)!

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