When to share DS diagnosis—S/O

amother

Sun, May 12 2019, 7:14 am

Another thread got me thinking...

If you had a baby who was born with Down Syndrome, when would you tell your other children about the diagnosis? When the child was a baby, or when the child was older and the differences became more apparent? Would the ages of the siblings affect this decision? If so, would you tell some of your children, but not others?

amother

Orange

Sun, May 12 2019, 11:19 am

We told out other children shortly after we received confirmation, at about a week and a half old. I didn't think it was necessary to make a big deal of it, emphasize delays or 'looking different' but it is something to that others will notice and may comment on. We very strongly felt it was important for children to hear it from their parents first rather than a friend or someone in the neighborhood. It is important for my kids to know that of there is something important they will hear about it from their parents as a matter of trust. Different features, delays etc my kids can learn about as they happen or come into their awareness. until then, and now still, they just love my daughter as their adorable baby. As they come into awareness of differences I am very matter of fact about it. I find that they take my vibes, if I make it 'thats just the way they are just like you are just the way you are' then it's not such a big deal to them.
It may make a difference if there are medical concerns right away or an extended hospital stay....

amother

Blue

Sun, May 12 2019, 12:12 pm

amother [ Orange ] wrote:

We very strongly felt it was important for children to hear it from their parents first rather than a friend or someone in the neighborhood. It is important for my kids to know that of there is something important they will hear about it from their parents as a matter of trust.

I find that they take my vibes, if I make it 'thats just the way they are just like you are just the way you are' then it's not such a big deal to them.
It may make a difference if there are medical concerns right away or an extended hospital stay....

I have a lot of experience with this and agree with the quoted.
Depends on kids ages, but in general, telling the kids right away with a positive and upbeat attitude is the way to go.
G-d does not make mistakes. He gave this child to YOU as parents and to your kids as siblings. They are uniquely suited to this job. He knows.

Kiwi13

Sun, May 12 2019, 12:38 pm

Like others already said, so much of how the other kids will take it has to do with how it is presented, including tone and body language and facial expressions (kids are perceptive).

This isn’t the same, but I have a young child who is in a preschool classroom with several kids with varying levels of disabilities. He came home last week telling me about meeting a new girl in his school and he said, “Kayla (name changed) doesn’t talk, even though she’s still a big girl.” He went on to tell me that she’s four and she’s his friend and even though she doesn’t know how to talk they can still play. We had a talk where I basically just encouraged these ideas and we talked about how Hashem makes everybody different because we all have a different job to do here, but we can all still find ways to be friends. I thought it was so beautiful. I love that he is exposed to differences so young and that his school handles it so well.

It’s probably different with siblings, but I’m not sure of the specifics. I have a younger child who is in the process of diagnosis for significant delays. We haven’t spoken with our older child about it yet, other than to teach empathy that his little brother doesn’t understand the rules yet, and everyone learns at their own pace.

Kiwi13

Sun, May 12 2019, 1:51 pm

seeker wrote:

I would love to know what preschool your kid is in, Kiwi13. That is so beautiful.

He’s in an integrated program through our local school district. He started on an IEP himself, and he made immense progress. He will be mainstreamed next year, B”H. I love the real-life education he got in his current program about relating to friends who are different than him.

cbsp

Sun, May 12 2019, 8:18 pm

I would say something if they're of the age where people would be talking to them about it (so Chaim Yankel, how does it feel to have a special brother) or if this baby will need a different level of care from the start (NICU and mommy's not home, heart condition which may necessitate extra attention and surgery, EI therapists invading the home, etc).

I wouldn't deliberately tell some and not others specifically - why put an onus of secrecy on the children?

amother

Orange

Sun, May 12 2019, 9:23 pm

Just some food for thought, some of us with children with down syndrome know before the baby is born but many of us don't know until afterwards (yes, despite ultrasounds and hard to believe in 2019 but true)
The parents acceptance and reaction to the diagnosis plays a big role in when the ey are ready to share and even more, to how they give the news over to others. Some may find answering older siblings question difficult when they are grappling with acceptance themselves.
Hashem should help us all accept and love all our children exactly the way they are because they are perfect, the way he wanted them to be. Their journey in life may or may not be different than ours but it is the right one for them!!

amother

Coffee

Mon, May 13 2019, 12:14 am

As a sibling to a DS girl, born when I was 8 years old, heres my advice:
If they are old enough to sense that something is different, tell them right away preferably the first time they see her (if its already been confirmed by then)
I still remember this so vividly and it was 21 years ago! When my sister was born we went to visit her and my mom in the hospital the next day. My parents didnt say anything to me about her being DS, I remember my older sister whos 4 years older than me was holding her and I looked at her and im like why does the baby look different? So shes like oh shes down syndrome. Ill never forget the feeling of “oh, why didnt my parents tell me that? Is it a secret? Is it a bad thing? Do they think im too immature to understand?” I remember the whole thing being very confusing for me. I wished my parents would have told me hey your sister has downs syndrome so she looks a little different, might act a little different but shes healthy and we love her etc in a totally accepting and positive way and it would have felt less confusing for me at that age.
P.s. I don't think my parents struggled with feeling accepting towards it, I think they just didnt think about having the conversation with me, an 8 year old, to make sure I felt accepting towards it as well and explaining it to me etc. that being said, if the parents are still struggling with feeling accepting and positive towards it I would imagine the whole scenario would be a little different)
Sorry if im rambling but I guess my point is that you the parent should be the one to tell them, and the sooner the better- before they start to feel confused about it!