Never happened.
Special needs trust, guardianship - those are the big things.
It’s funny to hear someone refer to my estate and the word “bulk” at the same time, as if there’s much there. 
Our will doesn’t divide it up now - the trustees would decide. But yes, I think we’ll devote more to her, and I think the sibling will understand.
Are turtles herbivorous or coniferous?
What’s the “right” thing to say, when you see a baby with Down’s? My first reaction is to say something like, “what a beautiful baby!” or “what a little sweetheart!” but I realize that these are probably not good things to say, because of the stereotyping about how all Down’s kids are happy and sweet, and always smiling. The last thing I’d want to do is hurt someone’s feelings or grate on someone’s nerves.
So what DO you say to the parents of the beautiful baby that obviously has Down’s?
Say whatever you’d say about a regular baby. You won’t offend any new parent by saying their baby is beautiful or sweet. I wouldn’t associate that with the stereotype myself.
“What a beautiful baby.”
Did you see the recent story about life-spans for people w/DS? BTW, though I disagree with his politics, George Will is great about defending his child w/DS. He gets stabby when people say his child “suffers” from Down Syndrome. His reply,“My child HAS Down Syndrome, he suffers from being an Oriole fan.”
It sounds like your daughter is in a typical, mixed classroom. How have her teachers been, overall? Have they been good at adjusting to her differences? Any serious or persistent problems?
Thanks for starting this thread.
How have you/are you planning to handle puberty/sexuality/reproduction? I know fertility is reduced when a person has DS, but they’re often not sterile. Can she handle being a mother down the road, in your opinion? Does she have the cognitive facilities to give informed consent to sexual activity someday? Are you more concerned about her being pushed into sexual activity she’s not ready for than you are your neurotypical daughter? (I realize they’re both still young, so these are still hypotheticals for you.) Will you have her put on contraception when she’s of fertile age? What if she doesn’t want it? Have any of her doctors or nurses given you and DS-specific guidance in these matters?
I’d like to touch on this; my uncle has DS and the mentality of a 3-4 year old. He will be 56 this year. It’s amazing to think that when he was born doctors told my grandparents that he would never live past 20 and that he should be institutionalized. The main thing I wish people would understand about DS is that even though they grow and age as other people do, they are children mentally (mental age depending upon the severity/type of the syndrome.) They are loving and funny and enjoy life.
Yeah, George is usually pretty lucid, until he blames everything on “liberalism,” including the failures of the O’s. It was mostly a good article.
Usually fine. They don’t have to deal with the hard academic stuff though, the special ed teachers do that.
A few have been a little less inclusive than I’d like, but overall it has worked well.
Oh, dear God, puberty. Please, no.
Seriously, it’s a little early to know the answer to most of those questions, but of course I’ve thought about it in the abstract. She’ll obviously need special help like with anything else, but there are programs out there to help us know how to teach her and how to handle things. I dread it, for any child, but it must be done.
Some people with DS do get married, I know that. Usually to another person with DS or a similar disability.
Well, they are not all children mentally. And that’s far less likely today - if your uncle had been born later, he might have had early intervention and a better education and make it beyond that mental age. It is amazing what those doctors said, and keep in mind that we’ve moved even further with people with DS, very quickly.
Thanks for your post, it’s nice to hear from others with a family member with DS, especially one that age!
Of course mental age varies greatly depending on early intervention and education! They’re people just like everyone else, and I hate that the majority of the public still buys into the stereotypes (especially in uneducated areas). Stigma is an awful thing!
Yes, and the problem is that most people in the public don’t even know that early intervention exists, or that it has changed so recently. One reason I started this thread.
What’s your uncle do in the daytime?
Up until he got cancer a few years ago he was in a group home. They had normal everyday lives, went on field trips etc. and he came home on the weekends. He loved it! My grandparents were getting up there in age and realized that they couldn’t give him the daily stimulation he needed, hence the group home for DS people. He got testicular cancer a few years ago, went into remission, and has been up and down since then. He recently was diagnosed with congestive heart failure and wasn’t expected to pull through, but he overcame that too and is out of the hospital. He is proving everyone wrong!
Awesome. Thanks.
Wonderful thread. Thank you for posting it. I’ve enjoyed Reading all of the comments.
Glad to hear it. Thanks to those who suggested it.