Desperate and sad

[SadDad101]

I hope I am posting this in the right place. I am trying to find some ideas or solutions, tthat we haven't yet tried, for my daughter. A little bit of background:
Daughter is 13 years old. She was born with Down Syndrome and had very challenging behaviors from a young age, including physical aggressive (hitting, scratching, throwing objects), repetitive actions that can sometimes be violent like slamming herself against walls, raging tantrums that could last for hours... we've been to behavioral management counselors, day programs inpatient and other types of therapy for years now. Shes been given other diagnoses like ADHD, ODD, and Pervasive Developmental Disorder (PDD), but we are not entirely sure if they're accurate or not because a she has low verbal skills and has trouble communicating her feelings/frustrations. We've had her on a lot of medicationd and things seems to improve for a while and then it all goes downhill again. Right now she is at a residential treatment center (Residential Treatment Center (RTC)) but she will probably come home soon.
We have one other son, adopted, 10 years old, without any disabilities who to be honest dislikes her and resents her. It breaks my heart. I stay up at night thinking what might happen to her when we're gone. We considered a group home but there have been a few scandals here wiyh group homes for developmentally disabled adults where there was severe abuse. I can't bet on her being protected in such a place.
We are looking for any ideas or experiences of other parents who have dealt with similar issues. We're willing to try basically anything at this point.

 

[karisma]

Hi SadDad. Welcome and im so sorry for your pain. Here in a while, others will respond with great advice, though it may not be easy to hear, or implement. I know how much this hurts. Its agonizing, beyond belief. You are not alone. Hugs to you and your family. Glad you found this site. It has saved my sanity. I arrive at new levels of understanding of this "thing" daily. The "thing" being the whatever is wrong (bipolar and addiction mainly) with my son to cause him to be a person who self destructs right before my eyes, no matter what I do to "help" him. It has helped me tremendously just knowing I am not alone in this. Warm, soothing thoughts for your family

 

[Praecepta]

Are you worried that your son will do something harmful to your daughter when you are gone? Or that leaving her by herself, she will harm herself?

If the your son is normal and he would be watching her, a camera system inside the house would keep him "honest".

If you are worried your daughter might do something to herself while you are gone and the son would not be there to watch her, then you simply can't leave her alone. Simple as that. So babysitter or group home would be your only choices.

 

[SadDad101]

Son is perfectly normal, and I have no worries about him hurting her or anyone else for that matter. He simply dislikes her, and doesn't want anything to do with her. I can't blame him.
And, yes, that's what we used to do before she left for the Residential Treatment Center (RTC).... never leave her alone. Our lives were run according to her schedule. Even something simple like going out for groceries was a complicated logistic operation. My wife had to quit working and spent the mornings and afternoons dealing with her along with the home aide. I feel guilty for leaving her alone like that.
I'm worried about what to do next. Where would she go after the Residential Treatment Center (RTC) (because she can't stay here, we just can't supervise her to that extent), and whether she would be safe.
It feels like getting ready for the big thing - after our passing and the kids will be grown up and on their own. There will be no one there for her. She will be at the mercy of some group home somewhere.
I couldn't feel more guilty even if I tried.

 

[Sister's Keeper]

Sorry, I have no experience with Down syndrome, personally, but I did meet someone at work who was teaching, or having her son taught, ASL. (American sign Language) She did say it improved his behavior. He, too, had poor verbal skills.

Unfortunately, I think you do need to look towards some sort of group home for your future. As horrible as it sounds, you child will, likely, outlive you, and you can't count on her sibling to care for her.

DO you have a Division of Developmental Disabilities (DDD) in your state? Is she receiving services? Have you contacted ARC? Does she or can she receive services through them?

Perhaps their is a partial care or day program she could attend? Or a medical day care in your area?

 

[slsh]

Hi Sad Dad - welcome.

Wow... you're facing something I've been avoiding for a very long time. My oldest (age 27) has severe CP, is totally dependent, nonverbal, tube fed, epilepsy, etc. We have not investigated group home settings for exactly the concerns you state - the most vulnerable of our kids are the most at risk of abuse. Additionally, we live in a state that does not provide services to kids or adults with daughter, generally speaking, and our goal is to live long enough to retire to a different state. Should we kick-off before then, brother-in-law is designated guardian... but to be honest, I'm not sure how he and his wife would be able to deal with our son's needs, and the state they live in isn't a whole lot better in terms of supportive services. I'm ostriching for now.

I do think getting in touch with ARC would be a good idea for you (do as I say, not as I do, LOL). At the very least, they might be able to give you an idea of what is currently available in your area *and* maybe put you in touch with other parents in the same boat (parent-to-parent contact has always been the most useful, in my experience). Also look to see if there are any adult advocacy groups - I can't remember the name of the one here in Illinois, but I do know that they've made progress in the semi-recent past in terms of making the state be more accountable for their provision (or lack thereof) of services to adults.

Because your daughter is 13, the school district is still responsible for educational services. Have they been helpful at all? Ours wasn't, but some are. She's coming up on 14, so they should soon be including transitional services in her IEP - can she work, either independently or in a sheltered environment? That's an issue that should be addressed in her IEP, and future living arrangements can (or rather *should*) be addressed in the IEP. It's been years so I don't remember the specifics, but I believe school districts are supposed to bring in the adult developmental disability agency for your daughter, though for some reason I'm thinking they may not *have* to do that until she hits 18 - but it never hurts to ask for it earlier. Maybe contacting an educational advocate would be helpful also. All states have a Protection and Advocacy Center, federally mandated, for children and adults with developmental disabilites. Regardless of whatever other diagnoses she may or may not carry, I would think the Downs would be the primary diagnosis, therefore developmental disability would trump all.

I've read several articles over the years of parents who have created villages around their developmentally disabled kids - bought homes, recruited other roommates of similarly abled young adults with like-minded parents, hired staff, found or created work for their kids, involved them in churches/temples/mosques, really integrated their kids into the community, so that when the time comes that the parents are gone, the kids will be well situated. It's not something I've investigated for my son because he's essentially quadriplegic and cannot work in any environment, could be considered medically fragile, etc., but... I can see it working well possibly for your daughter?

I truly understand where you're at. It's beyond stomach-churning to contemplate handing over the care of our kids to someone else, but .... realistically, it is something we have to plan for. Ugh.