DownSyn Forum

[rachelann888]

Hi All! hope you are all doing well.

sorry i still don't have a picture on my posts. I just haven't taken the time to figure it out...

any way I was just wondering when you have or plan to tell your child's siblings about Down syndrome etc. I have talked with my husband about this a couple of times and I just wonder what you all have done. Hayden's brother is 3.

We don't avoid the topic, but I don't feel he can understand a lot of it right now. Mainly (because his brother is present for all Hayden's therapies) we talk about why he needs therapy and the extra attention from the therapists because Hayden needs extra help learning. Kyler loves to help Hayden "learn" and is a great helper.

I have also came across some children's books about down syndrome and considered getting those at some point..
anyway what have you done or what do you plan to do?

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[elizasmom]

My oldest son was three when Eliza was born and we started out by mentioning Ds when Eliza started having therapies like "Eliza goes to Carrie to help her learn to walk. She needs extra help because she has Down syndrome." At the same time we have become friends with several families with kids with Ds around his age or siblings around his age and we pointed that out "Tommy's brother has Ds just like Eliza". We've also continuely told him "If you have any questions about Down syndrome feel free to ask." I bought "Paint the Octopus Red" but found it a little too sorrowful, as i don't think he felt our sadness in the beginning. He really liked "My Friend Isabelle" though. But i think knowing other families is what has made Walker proud of having a sister with DS. Good luck!

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

[ellenstumbo]

Ellie is 3 1/2. We have tried to explain it, but to her, Nichole is just her baby sister. We have told her that things take Nichole longer. She is also at most therapy times, and we tell her those are Nichole's special teachers to help her because Nichole has to try harder.

Now, there is an older girl with Ds that we know well. She asked one time why if she is a big girl, she can't talk well. explained to Ellie that it is because she has Down syndrome. That kids with Ds have a hard time talking because their hearts are big and full of love. Ellie also has a best friend her age with Ds. She has never even hinted that there is something wrong with her, not even with her speech.

The other day however, she announced that her sister has Down syndrome, her friend has Down syndrome, the older girl has Ds. But then she went on to say all these other people had Ds. I asked her why, and she said because they can't talk well So now she is convinced anyone that cannot talk well has Ds, and she said all babies have Ds because they cannot talk at all. I guess she will eventually get it, but not yet.

Okay, I did not help you at all did I. I just think at this age their siblings are just their siblings. There is nothing different about them.

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

[Ditta]

I've started talking to Matilda (3,5) about DS, because we will adopt a baby/child with DS, and Matilda has been saying that her mummy and daddy couldn't look after her because they were poor! Well, since there will likely be contact with the birth-parents, we need a different explanation! So we mention in passing (several different times) that her little sister will have something called Down Syndrome, and it's called that because the doctor who found out about it is called Doctor Down. And that in her body, she has instructions that tell it how to work, just like we do, but her instructions are a bit different, and that she will take longer to learn to walk, talk etc -but she is lucky, because Matilda knows how to do all these things, and she will help her. Anyway, we emphasise different bits of the speech at different times. We haven't started pointing out other people with DS yet (since she doesn't have a mental image of her new sister, since we haven't found her yet ) but we will do that when we get our baby placed -we'd likely be meeting a lot more children with DS then too, in groups etc.

Anna

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Matilda (2005,) Philip (2007,) Teddy (DS, 2009) & Ramona (2012)
Blog: http://www.ab8matilda.blogspot.com

[kzmom]

Zach was three as well when Katelyn was born. Before we even mentioned Down syndrome, I spent a while (maybe a week) talking about other disabilities- that are easier for a child to understand. Like some people can't hear, or see, or their legs don't work...Then we brought up the DS and how it just means that she needs help learning because she learns at a slow speed. Some people are fast and some are slow and both are wonderful!

We still talk about it and Zach knows that it means that Katelyn learns more slowly, but to him she is just baby sister!

We plan on just always keeping it in the open and talking about it as things come up.

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Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

[zachsmom]

Ditta wrote:

And that in her body, she has instructions that tell it how to work, just like we do, but her instructions are a bit different, and that she will take longer to learn to walk, talk etc . Anna

The way you wrote that is awesome. I love the whole instructions part. I have explained it to my two girls (4,5) by telling them that h will take a little bit longer to learn to do things and with extra love he can do everything and anything he wants just like them. To them they don't care he is their baby brother.

[dharmatia]

Dharma is 3.5 and has no idea that Callie's different. We talk about DS in the house like we talk about laundry....it just IS. No sit-down serious speeches, no make believe scenarios to act out feelings, no picture books showing people with DS. Callie is Dharma's little sister, and that's really all Dharma knows/cares about right now.

As the girls get older, we plan to address any questions as they arrive. But, for now there is really no need for us to explain anything. Dharma is around for Callie's therapy, and also likes to help Callie 'practice' learning things like rolling over or sitting up. Dharma also gets a kick out of talking with her hands to Callie since Callie doesn't 'have any words yet'. So cute.

I guess my advice would be to follow your oldest's cues. If he needs more information, provide it. If he doesn't, then don't. Encourage love and support because they are siblings, not necessary because Hayden has DS. Good Luck.

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Tia
Wife to my AMAZING husband, Clint (10-22-05)
Mom to Dharma (7-26-05) and Callie (7-11-08 DS)

[violettesmom]

We talk in these terms: Vivianne is left handed. Lilianne has curly hair. and Violette has Down syndrome. Mommy is the only one with brown eyes. Daddy is the only boy.

Lilianne was 3 when Violette was born as well. She knows Down syndrome, and like the others who have posted it just is. We talk about it, we aren't weird about it.

If you address it as just another something, your child will get it, I think!

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[Sophsmum]

Our son is nealy 4 and I have been wondering how to approach it all with him. At the moment I haven't hidden anything and talk openly about Soph in front of him. He hasn't had a baby sibiling before so he doesn't know any different for now, she's just his little sister. I am expecting him to ask questions though, he takes everything in and normally doesn't miss a thing, I have caught him looking curious at some points though.

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[QuinnsMom]

Our son Riley (who is knew even when we had the prenatal dx. He is pretty bright and sensitive to the needs of others so we felt he could handle it right away. He has become an advocate and talks to kids at his school about DS. His message is getting out because I just heard from a friend of mine who has a daughter around Riley's age that her daughter heard about DS and Riley's sister. My friend's daughter attends Sunday school with a girl in Riley's class. This girl started talking about her friend Riley at school and what he shared about his sister with DS. That is so awesome!!! What we did when we told Riley was talk to him about another family we knew who had a daughter with DS. We told him that his sister will be similar to Grace (the girl from the other family). We have some books too.

My son Aidan is 4 and although could understand it, he is not so much into serious conversation We bring up here and there that Quinny gets help to learn how to walk, talk, etc. We go to a lot of activities for DS and do mention over time that this event is for DS or we are going to walk for Quinny and raise money for DS so I think over time it will all come together for him.

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Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

[rachelann888]

Thanks for all your great stories and advice.
I think the siblings to our kids are great. It is so wonderful to see how they interact with their siblings with DS and how they do see them as just their brother or sister.
Kyler does do really well with Hayden and I don't have any huge concerns. I guess I was afraid of an older child pointing out Haydens differences (like his nystagmus etc) and thinking it was weird and Kyler not having an appropriate answer... but hello he is 3 I need to remember that

but you are right as parents we do set the example in how we talk about it.

I think I am just getting ahead of myself. and I am a weirdo and like to have a plan and be prepared for things... I am still learning to take one day at a time!

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