I have a child with Down syndrome AMA

613mitzvahgirl

Sun, Oct 15 2023, 2:07 pm

I don’t have any questions for you. I think you and your husband are true heroes. You should just enjoy every minute and every second with your cutie pie. HaShem chose you both as shlichim to having the Zechus to raise your Tzaddik or Tzaddekis- I’m sorry I don’t know of your cutie is a boy or girl.
I also have kids who are part of HaShems army and we stand proud and tall that we are raising Tzaddikim and Tzidkunios.
Remember when the others look down at us we look up. We have HaShem on our side. They’re jealous bc we are higher and closer to HaShem on a different level.
I stand tall and proud snd especially proud to be your sister and so should you.

amother

Orange

Sun, Oct 15 2023, 2:14 pm

amother Dustypink wrote:

I personally got yelled at by Chaim Medical, Dor Yesharim and a very prominent medical rav, that the NIPT is a test you DO. NOT. TAKE!! so so so many ppl have gotten false diagnosis with that test. I personally cried for 9 months straight due to a diagnosis of a severe genetic disorder the NIPT picked up on and in the end my baby was bh bh bh totally healthy!!

the medical experts like nuchal translucency ultrasound that detects the folds and fluid behind the babys neck to indicate whether there are any genetic abnormalties

Interesting Bec my doctor told me specifically for ds there’s a 99% accuracy for nips test…

amother

Orchid

Sun, Oct 15 2023, 10:44 pm

I did not do the NIPT test, and in reviewing the many ultrasounds afterwards my doctor didn't see anything remarkable. My daughter bh is an adorable healthy girl with down syndrome.
I know the thought sounds overwhelming to those of you who haven't walked this road, and the unknown can be overwhelming but it is a blessing beyond and she is the joy that keeps us all going. In some ways, much easier than my neurotypical or more mildly neurodivergent children.
Yes, most feel "I can't do this" at the onset, but like with any child we grow into them with each stage . A first time parent can't fathom a teen either. It's not as scary as the unknown makes it out to be. Many children are very capable and there is a wealth of support out there if you want it

amother

Bottlebrush

Wed, Feb 14 2024, 1:19 am

Our new baby has DS. He's still in the NICU for breathing issues. We haven't told our kids yet about the diagnosis, although I do feel ready to discuss it with them, I think my husband hasn't come to terms with it yet. He is so scared to tell his parents. He thinks it will be dangerous to their health if they knew, because they wouldn't be able to handle the shock or the panic etc. (So he doesn't want to tell our kids since of course they will mention it to their grandparents.)

Can anyone here who experienced this have any advice on how to explain this to the older generation? I can't keep this child hidden . They're going to find out one way or another. It can't be a taboo.

amother

Hyacinth

Wed, Feb 14 2024, 2:24 am

amother Bottlebrush wrote:

Mazal tov!!! Now it is hard but your child will brighten your and your family's life. My 5 year old daughter is the most loving child and grandchild. She is charming and all our relatives go crazy over her. When I was sad about something earlier this week, she noticed immediately and tried to cheer me up.

I did not have your situation where we were worried that telling our parents would affect their health, but I can tell you that your attitude and the way you present it will affect how others (children, relatives, neighbors, friends) accept and relate to your child. When we told our kids we had them meet her first in the hospital to see how cute she is, and then we told them that she has down syndrome which means that it may take her longer to learn things and each of them will be able to help her learn to do things. When my 1st grade daughter then told her morah that she has a new baby and her baby has down syndrome the teacher said oy, and my daughter responded "why oy, she's so cute".

We also composed a nice email that we sent to everyone letting them know that our daughter has down syndrome. Without making it a nebach, so that no one would make us into a nebach. (Doesn't mean that inside we didn't feel sad about it, but we didn't need other people not knowing what to do or say or avoiding us.)

Hope this helps a little. There is also a great book for kids Our New Special Baby, that may be worth getting. Also there are organizations/people specifically to help new parents accept and adjust to their new situation.

amother

Wed, Feb 14 2024, 2:31 am

amother Bottlebrush wrote:

Mazel tov and welcome to the club Smile

Its hard to see the good in it at the begining but it will come.
Im not really sure about how to let yout parents in law know but I can reassure that its normal for the husband to take longer to come to terms with -my husband and most people I spoke to had that.

sequoia

Wed, Feb 14 2024, 3:48 am

amother Bottlebrush wrote:

Mazel tov! ❤️

I haven’t been in this situation, but I suspect, as with most things in life, that their reaction will depend on the sort of energy that you project. If you convey the news calmly and confidently, it will go a long way towards easing their fears.

way2go

Wed, Feb 14 2024, 4:01 am

amother Bottlebrush wrote:

Mazal tov! Lots of nachas from your baby and I hope things stabilize and your baby comes home from the hospital really soon!
It is common for our husbands to have a harder time adjusting to the news and becoming comfortable to share it. I had to tell both my parents and inlaws and all siblings. It's ok. I don't know your inlaws but often people surprised us at how well they took the news and a lot fed off our projection/presentation of it. Where we were ok with it, presented it as a child who will need a little more help learning but will iyh do very well and treated our child like any other baby, people's attitudes and perspectives followed. If you are all tumulted about the "disaster" it is then that message comes across too even if you don't say anything. It may also be worth considering if your husband's concerns are a projection of his own fears and overwhelm with things and therefore envisioning it sending his parents into the same panic too. If they are super overwhelmed and concerned it may help them to connect with other grandparents of children with down syndrome. We actually joke sometimes that there should be a grandparent support group but all they would do is sit around and show off pictures of how amazing their extra precious grandchildren are. Know that even those who did have a hard time in the beginning come around and are infatuated even more.
Have you been in touch with touch of care? They put out a beautiful packet for new parents with resources and some people to reach out to. They may be helpful to you as they guide many on the initial journey.
You sound like you are doing well and thinking things through both for your children and inlaws. Wishing you a smooth process in this part of the journey, the hardest part is just doing it. You will feel calmer with these steps behind you. Good for you for reaching out. When you are ready there are plenty of people to connect to and chats if you are interested. Most importantly, know that you are not alone! Many of us have walked this road before you, and are here to be with you on your journey through it. If there is any way I can help, please pm.
Mazal tov again and enjoy your precious bundle!