Here was the adopting mom's post:
"I went visiting teaching a couple of days ago and one of the sisters I visit was asking me about our upcoming adoption. She seemed enthusiastic about it until I mentioned that our daughter has Down syndrome. Then she proceeded to tell me about all the patients with Ds she sees (she's a doctor) whose siblings are "stuck" caring for them and who argue and feel resentful about it. This was the first time I've gotten hit with this kind of negativity. I kind of stammered through a reply about independent living becoming more the norm these days, but I wish I'd been better prepared. Any advice?"
{For those of you who don't speak "Mormonese," (hee hee) a visiting teacher is woman from your ward (congregation) who is assigned to visit with you and share a gospel message in your home once a month, as well as just be there for you as a friend. All women are assigned visiting teachers and most women are visiting teachers, as well.}
Although my friend's visiting teacher was a bit tactless with her advice, she brought up something that's important for anyone with a child who may be dependent on others as adults, to think about: What will happen with them when we pass away and they are still here?
First of all, I have to point out that our girls could very well both go to college...even find true love and get married some day. So many exciting advances are happening in DS research that make our daughters' futures very bright!
But we can't depend on this and we've talked about it with our 3 older kids a couple of times. We asked them if they think they would be willing to have Anya and Hazel live with their families, or even take turns having them.
Their response: "Why WOULDN'T we want them to live with us??" (Like...are we missing something??)
It is our hope that, when that time comes, at least one of our five other children will still feel this way and that their spouses and children will as well. But. We know that life happens, and we also know first-hand how demanding it is to raise a family. It just may not work out this way. And that's OK. We have to have a plan in place for Anya and Hazel, seperate from their siblings. We just do.
As soon as Hazel is home with us, we plan to set up a special needs trust for each of our girls, and put money away from now until the time that we die, so that, if needed, they can either live in a group home setting, or be partially-supervised by someone, independent of their siblings. For now, we have increased our life insurance so that if both of us were to "go away" (as Jeremy so nicely puts it) in the next 20 years, our family would be able to hire help or whatever they need to do.
I know the future is uncertain. But ALL of our futures are uncertain, aren't they? This is just not something that we sit and worry about. We need to do all we can do to make sure their needs will be met in the future, and leave the rest of the Lord. We know He led us to these girls, and that he'll take care of whatever details we can't. He certainly has up to this point!!
I love this response to the post that was on the Facebook group today. It was written by a sister of a man with DS:"I think you could tell her that THESE siblings are fighting for the chance for their DS brother to live with them should something ever happen to mom and dad. Never once did we resent anything about our upbringing. In fact, we feel sorry for people who missed out on it. Do they take some work? Maybe. But the struggles with them can be easier than with us. Mom says Jerry's the smartest of all of us, and after hearing his testimony today over the pulpit, I AGREE! I think its the world's selfish attitude imposing itself on us to think that we're strapping our other kids down with a handicap sibling. I can guarantee NONE of us feel that way. Jerry's IT. We'd do anything for him!"
I'd love to hear your thoughts on this subject, especially if you have a child or sibling who may need assistance as an adult, or even better, is already an adult! So much to think about, for sure.
3 comments:
I posted on that thread, but I'll say it again here.... Piper, for the time being, loves the idea of taking care of her brother when they're older. She often asks if she can be his mom right now (at age 6)! She ADORES her brother. I obviously wouldn't 'make' her take on her brother, so we'll have a trust fund ready for him for when we can no longer do it. We plan to build a house with a basement apt for him to live as an adult. But I hope her fondness continues so she'll love helping him later in life, whether he lives with her or elsewhere, and not resent him.
hola, when our first son was born 7 years ago, and with down syndrome. one my FIL's best friends told him that "Elias will be always depending on us" to what my FIL answering the most polite he could: "how old is your son?"
friend: 30
FIL: and where he lives?
friend: with us
FIL: who cooks his meals, wash his clothes, help him with money for a business?
by this point his friend knew where he was trying to say so he didnt say anything else.
after that 'talk' i knew it, there is nothing wrong on having a 'son/daughter' dependent of us, really, is how we feel about that.
we have talked about what would happen to Elias if we die, and not in a future, but like if we die today, and we have choose my husband's aunt family and we know they will see him as their own, and they agree too.
now after Elias, we adopted Eva, who also has donw syndrome. and while adopting her we also talked to them, because of course we CAN watch them with both of them, but we wanted to know what they though, and they totally AGREE too, we of course want to keep our kids covered, so, we are also setting up a fund, and trying to not have debts, and we have two properties which we will gave them as if needed to rent or sell to get $
people thought that Elias needed a brother/sister without down syndrome to take care of him if we are not here. well, we now have two kids with 'disability' and we dont want more. so people think is crazy, but we believe God is taking care of them, and will take care of them if we are not here. but of course we are doing our part, teaching them as much as we can to be independent.
Any one of us, at any point in our life, could have an accident, injury or illness that disables us to the point where we can never live independently, so should we all just stick to having one child so that no one is ever 'stuck' looking after a sibling? Or shall we hope that our siblings love us enough that whatever happens they would be there for us, whether that is in their homes or living elsewhere with their support? I know which one I'd prefer.
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