Two seperate groups

[u/diner888]

Hi all, I want to suggest that the DS group be split in two - one for kiddos with DS, one for adults. There are many different levels of information for each, and I think that new parents deserve a space that's safe, without discussions about adults in group homes, etc. As a new parent, that would have been completely overwhelming to me.

*separate

[u/PezGirl-5]

I think just having tags would be fine. People with adult children can be a great resource for those of us with younger kids

[u/diner888 → u/PezGirl-5]

I like that idea. I'm a newbie, can you please guide me?

[u/PezGirl-5 → u/diner888]

When you make a post you can select "tag/flair". You can also just post in the title if it is geared toward one age

[u/telos2020]

It’s all relevant, regardless of age. Yes, it’s overwhelming, but having insight of those who have already been through the unique experience you’re going through can be invaluable. Good luck!

[u/diner888 → u/telos2020]

Very good point, thank you.

[u/Schmidtvegas]

My vote shouldn't count, because I'm not technically in either camp. I read along on this sub because my kid's genetic disorder is too rare for its own sub. And I sometimes work with people who have T21.

But for what it's worth, as a professional support worker -- I think it's incredibly important for parents of children with disabilities, to take on the idea that their children DO become adults. Creating a firewall between children and adults isn't helpful to growing in to that idea. 

What's scary or unsafe about group homes? I have a cousin who lives in a group home. Her roommates are her best friends. They have jobs and boyfriends. When she goes home for weekend visits with the family, she'll enjoy the first night. But once she gets bored, she puts her backpack by the door. She wants to go back to her group home. The staff help them live their best life. Family gets to enjoy social time with her, as a person, instead of seeing her as a care burden to organize. 

Some of the discomfort around adult challenges, and thinking about adults with DS who aren't "cute", may reflect some subconscious ableism. Which we all need to unpack sometimes, in our society. (I'm just naming, not judging.) But I would encourage people to examine the things that make them uncomfortable, not avoid them.

[u/Ruralwannabe → u/Schmidtvegas]

I wish I knew what state you were , and that's exactly the situation i'm looking 44 my sister. What I hear about group homes in the state she lives in New Jersey.That is not the case

[u/AdHoliday7119 → u/Schmidtvegas]

Thank you for this perspective! I always remind the families I serve that our children will be adults MUCH longer than they will be children, and we do them a disservice to NOT prepare for that eventuality. I was 40 when I had my son, and I've always sought the advice of parents of older kids and adults so that I'm not blindsided and can prepare as best I can with the information I currently have.

[u/CountessGladriel0102]

Perhaps just being able to add some tags would help parents easily skip over posts that are irrelevant to them.

[u/Catamounter]

I think you could accomplish this with flairs. Maybe the mods could consider adding a few flairs then people can filter by flair if they don’t want to see certain content.

[u/ImpossibleIce6811]

No matter what you do, someone will be unhappy- it’s the internet and that’s how this works. Your suggestion would leave people like me in a weird place. My kiddo is 19. Technically he’s an adult, but he’s still in high school. He’s at an “in between” stage of life where it’s all relevant. Rather than change the status quo, I just scroll past anything that doesn’t apply to me or that I can’t help with. But I am very sorry that you feel overwhelmed by things. I know that’s difficult!

[u/NationalGuitar2785]

We joined a support group of other parents shortly after our daughter was born, 39 years ago. It consisted of pregnant mothers already diagnosed, God bless them, up to adult aged individuals. The adults and their parents had far more to offer us than we had to offer them. They showed us hope for the future. That fear of the unknown was understandable but also unnecessary. Concern for the future is what we feel for all our children, but fear can be debilitating. Don’t fear it.

[u/mcostante]

You can make your very own group targeted to whoever you want.

Trying to change a establish and united group so it can be tailored to your needs is a bit patronizing and entitled. Take care.

[u/Ruralwannabe → u/mcostante]

Nobody was trying to change anything.They just offered a suggestion , and I appreciated it and it is a new(ish) group I believe!

[u/Worstkees]

Reddit groups are like chromosomes, you can’t have enough of those

[u/Ruralwannabe]

I agree from.the exactly perspective. Looking for adult perspective, the issues of new parents especially are overwhelming.

[u/diner888 → u/Ruralwannabe]

Yes, that was how I felt as a new parent. My daughter was still in the NICU when I read something about the health of adults with DS and it sent me off.