Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
So, we have a young adult son with developmental disabilities, specifically Down syndrome and we have to think about his future. I am 57 years old and he is 25. The issue becomes "What is best for him?" and this is next to impossible to answer since he functions like a pre-schooler and discussing options or even showing him options would be lost. So, I thought about putting this in the special needs parenting forum but few go to that forum unless they have young children. The issue really has to do with mental health. The abuse, neglect and exploitation were so bad at the day center he attended that I pulled him out two years ago and have him at home. I did homeschool him for several years so I am used to providing him with a good environment. Because of limited services in the areas of Kansas, the choices for him are either move to a residential setting or remain at home with me. I could self-direct his day services and have someone come in to take him out for a few hours a day. So, I am driving myself insane with this issue and tend to not get rational advice. This is not about me or something I should have but about what is in the best interest of my son. So, my thought is that I have seen others move into residential that function on the lower end of the scale and, sadly, they often do not survive because of the poor care and it is not unusual for them to be abused and my son could not communicate that. There is always the argument that he should be among "peers" but his social skills, manners and interests don't necessarily put him with these "peers" like they imagine. I think core values say a lot more about you than your IQ. I am sure this is much like it would be to decide where to place someone's parent when they could no longer live alone. He has a case manager but the services are contracted and their main interest is in growing their programs. Any thoughts appreciated.
Do you want to hear an honest truth? I knew a family with a son who had disabilities, like your own. They kept him at home, until the Mom died, and could not take care of him, then he was put in a nursing home, and went downhill pretty fast after that. He died about 6 months after his Mom died.
Others...the story is not so bad...yes, some of those homes are not great, the staff is not great, but the patients live in the group home setting, go to day program/work activity center, and back to their group home. It may not be ideal, but it is better than what the alternative was 50 years ago, instituationalization. With little to no supervision, or outdoor actitivities. Or meaningful activities.
There are other programs...look around...it is a tough go...not what you want or envision...but there are some gems out there...
I actually did look outside our service area, four hours away in an area where we would like to return to if the house would sell and found two programs. One had an opening and I discussed the issues with our son and it was "no problem". Well, in the Tier level he is in, they only provide "minimal" supports (12 people/6 apartments/2 staff total) which won't meet his needs so they told me to find a group home. No swimming or bowling or apartment but a group home/workshop. My son was so disappointed and now wants his own little house - I have this little book of micro-houses and he carries it around. I found out that he has to go through an application process to see if they can meet his needs so I am guessing that is the reason that I see older parents here out with their adult children that have more significant issues. With a contractor, money is made for bonuses and salary increases by saving on "expenses". When the list opens, you have two weeks to decide if you are taking a service and we waited five years for it to open. I am discussing these issues with the State.
It seems really important that you communicate with other parents with adult down syndrome children. I googled and this page came up. Down Syndrome Support Groups - Yahoo! Voices - voices.yahoo.com
I think that people with down syndrome are very special btw and for what it's worth.
I used to work as a camp counselor years ago and there was a little girl with down syndrome and she was like an angel.
I've never been able to "put my finger on it" but there's something about them that warms my heart. Is it the Mormons who think of them as angelic beings? I think so.
And yes, IQ doesn't mean s*** if there isn't a loving heart to go with it.
Good luck with your son. There must be a safe and loving place for him somewhere.
Thank you for the responses. The toughest thing when dealing with support groups is that our son is lower functioning and that puts us in sort of an "outcast" group because what everyone wants to hear is about people like Chris Burke although the person that answered the phone on the nearest group said "More of the kids are like your son than not but you just don't hear about them". We "chose" to parent a child with Down syndrome and we'll see it through. I guess if or when I see a program that is really worth taking the chances of what will happen without my constant vigilance, it will be a match so I'll continue to look and a relocation is a definite this year. I wish they were easier answers for all of the challenges in life!
I was going to start a new thread until I found this one which is most similar to what I am trying to find out. Would it be safe to assume that the waiting list for the Bernard Fineson Developmental Center in
Queens, N.Y has a waiting list of tens of thousands?
I guess it works based on the severity of the developmentally disabled adult. Would being placed into
a nursing home be faster then being placed into a group home?
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
Any thoughts appreciated.
My son was so disappointed and now wants his own little house - I have this little book of micro-houses and he carries it around. I found out that he has to go through an application process to see if they can meet his needs so I am guessing that is the reason that I see older parents here out with their adult children that have more significant issues. With a contractor, money is made for bonuses and salary increases by saving on "expenses". When the list opens, you have two weeks to decide if you are taking a service and we waited five years for it to open. I am discussing these issues with the State.
