Hi all,
After getting opinions and advice from everyone, I researched group homes. I found one near our home. I talked to my daughter and asked how she'd feel going to an Independent Living Center. She said she doesn't want to go because "it's too hard". Now. I have another concern that I need advice on. I've left the original post below (that way I don't have to re-type or explain the situation again :D ). How do I know if she's REALLY ready for a boyfriend? How much say do I have in a situation such as having a daughter with a disability? What if there is someone she wants to date- after seeing him only twice- but my husband and I don't feel right about the guy she's with? Normally, I know it's not up to parents to choose their kid(s) boyfriends, but my situation is a little different than alot of others.
I have tried for a year, maybe more, to come up with my own conclusion and what to do. Obviously, I haven't been able to do so.
I have a 19-year old daughter with a disability. A psychological evaluation stated that she had an IQ of 52 and was "mildly retarded". She appears "normal" (for lack of a better word) and likes to do the same things teenagers. She doesn't know how to read or use money above a 3rd grade level. She wants to live on her own. I've caught her on several occassions next to guys with her clothes off next to boys (this has been over a 3-year period). I don't know if she's capable of living on her own, or if it's a good idea. My husband says absoultely not. My daughter is of legal age, but does that qualify someone to live on their own? How do I know when she's ready?
Thanks everyone for all the comments and responses. I didn’t expect to get this many responses, but I’m glad I did. I have some comments and answers for the responses…
The psychological evaluation stated that she has “mild retardation”. I started working two weeks ago for a company who does a lot of supported employment for people with a disability. (And yes, my daughter is going there, too). Almost all of the client’s individual charts say that the individual has mild retardation, even though they are by no means retarded. I was mad when I first read what they said about my daughter (no, I’m not in denial). Then, I researched what it meant. It means “below average IQ”. None of my family or her friends knew she had a disability until I told them about two years ago.
As far as a group home, I don’t feel she belongs in one of those. She’s not that bad. Plus, we can do just as much for her here, if not more, than a group home could do for her. As of right now, she’s not in any school system. We’re trying to get her in a special program that helps children with disabilities learn to function on their own. (She was in one of those programs in Utah). When she was in school, she was in self-contained classes and she had some ‘out” classes. The “out” classes being ones that the “regular” students went to. The only difference was my daughter was able to have one of the teacher’s helpers go to the “out” classes with her. Yes, she was in a transition program. We’re actually in Missouri now.
We recently moved to Missouri. It has been quite a process looking into transition schools. I think I finally got a positive lead. She can take showers herself, dress herself, eat, do her hair, etc.
I don’t have guardianship of her. I looked into it. There was A LOT of court proceedings. However, recently I heard that I could get permanent guardianship of her. She is on the depot shot. For prevention and also to prevent cysts.
I didn’t think about reading maps or food prep directions. That’s a good idea. I have thought about the “Easy Reader” books. She wouldn’t be able to do customer service in a mall if she had to count money or had to read or how to do math.
I’m sure some people might be asking why I posted if I’ve done some of these things. I think more to get comfort and reassurance and advice that I’m doing the right thing(s) by not allowing her to move out on her own. :D
Please get her tubes tied or some other form of birth control now.
I know a woman with an iq of 70 who keeps getting pregnant and the grandma got stuck raising her greatgrandkid. Then the others were given away in private adoptions behind the grandmother's back. They are all retarded as well. The woman has STDs now and does not warn her partners. She is abused by these men she picks up. It just gets worse.
Get in touch with a social worker in your area and ask for assistance re: information on group homes, etc.
I would also IMMEDIATELY have her tubes tied or some other form of semi-permanent birth control done (IUD, Depo shot, etc.). I had an aunt who was 'slow' (but far more advanced than you've described your daughter as [i.e. she graduated HS]) and she ended up pregnant when she started working. No one wants to go through that... and it's the one thing you can control right now, so for her sake and a potential unborn baby's sake..... please do so.
I assume that your daughter is still in the public school system or a private day school setting with the school district. She is likely in a "transition program" to prepare her for adulthood, such as learning independent living skills and vocational job tasks. If she isn't, call your daughter's IEP team together NOW. You HAVE A RIGHT to call a team meeting whenever you need to do it. You need a plan for her before she ages out of the public school system and you have no help lined up for her. I looked it up: in Utah, the student "ages out" of the school system the day before the 22nd birthday.
I found this link online for your area: http://autismcouncilofutah.org/resources/adult-services/ . The website is for people with autism, but the links on that page are for any student with disabilities. She could qualify for a lot of taxpayer support (money, job coach, group home, etc) as an adult if you get the ball rolling now. Please don't wait. The IEP team, in which you and she are members, have a responsibility to create this plan for her adult living. This "plan" can be found in her most recent IEP. The plan should talk about where she will live, how/where she will work, and what training and education she should receive as an adult.
You mention that she is "of legal age" -- do you have guardianship? There is a whole process to complete the guardianship ppwk. I wish I knew more about that to direct you to the right place. I bet the Transition Coordinator from her school would be able to answer that for you, though. If there is no coordinator, talk to her case manager (usually the Special Education Teacher).
I'm alarmed that she is taking off her clothes with boys. Where is this happening? If it is at school, you might consider asking the district to place her in a more secure, private day school setting.
Lastly, I'm so glad that your daughter's reading level is so high. Good for her! I hope that she has access to a lot of functional reading materials, such as labels, food prep directions, schedules, maps and signs, etc. Practicing in the community is a good way to apply those skills. Can she find customer service in a mall? Can she read the receipt to make sure that she was charged correctly? She's going to need to hone those reading skills for independence in adulthood.
Please message me privately if you have questions. I am a Special Ed teacher of students 18-22. I'm in Illinois, but it appears that Utah is similar with programs and processes.
EDITED TO ADD: I just read the other new responses. Someone mentioned that you should get her tubes tied. Your daughter has reproductive rights. Please tread carefully down that slippery slope. Once you are assigned a social worker/coordinator for DHS, you can ask about how this is handled in Utah.
Legal age and mental age are completely different. She cannot use money, she doesn't understand sexuality - she would be completely unsafe and screwed if she lived on her own alone.
Look into a group home situation where they specialize in this. I would assume they do assessments on if it's possible.
I understand that you would like for her to lead a life that matches her physical age, that you probably dreamed about your little girl growing up and going out on her own, and it would be nice for you to have your own life separate from caring from her. But just the small facts you mentioned say that's not going to happen.
If she doesn't meet requirements for a group home, I would look into a home health aid so you can have some time for you, vacations, etc. Or perhaps if you can find a house that has a "mother in laws" quarters where she can "have her own place" at home?
I hope something works out.
I have over 13 years in the field of working with people with developmental disabilities. She is very very very able to live in a group home or sheltered living situation. I know people who can do very well in this type of situation. She needs to learn to be independent.
One reason is some day you will be gone and she will be an older person learning how to live in an institution or some type of housing outside of your home for the first time. It is much much harder at the older age than it is right now.
She has an adult body regardless of how her brain works. She is old enough to choose to have a sexual relationship for herself if she was within the normal range of intelligence. Just because her brain works differently does not mean her body does not work just like yours and every other woman her age. That is one of the hardest things for parents of adults with disabilities to come to terms with. Some refuse to allow them to go on birth control then find themselves very upset with the young woman comes up pregnant. Others put them on the pill and let them make the choices willy nilly.
I worked with 2 different couples that were married and living in their own homes. They did just fine. One of the couples had both spouses working in the sheltered workshop. The other couple, she had learning disabilities and worked at a job in the community someplace like Walmart. He had moderate MR and he worked in the sheltered workshop. They were both very happy couples.
It is hard to decide to allow them to be adults, I know it is. They are your children and you will always see them as such. They are capable of learning even at their age now. I worked with adults in group homes on various goals such as learning to manage money, shopping for groceries, laundry skills, spatial exercises (She could get lost in the bathroom at the store if she didn't have someone to show her the way out), brushing teeth, getting dressed appropriately for work, etc....it is fulfilling work. They do learn their goals. It may take years but they can learn them. If they really try hard they can do enough to get by with minimal assistance.
I think that she is old enough to start learning to be independent, she could start working at the local sheltered workshop in a secure non threatening place. You and your husband can start slow, finding a happy medium that pleases both of you. She will keep wanting her independence, it's human nature.
There must also be sheltered living situations too. That could come much later but still it's something she'll have to look forward to.
If you do not think she can do it, have her evaluated and either declared incompetent or see about a group home living situation.
It does not sound like she will ever be able to live on her own. Sounds like
the best place for her to live "independently" would be a group home. There
she will be supervised.
I would definitely look into this further. My county has an association for the assistance of the mentally retarded.
Many of them have jobs and have learned to get around by bus or shuttle, etc.
I knew the sweetest down syndrome couple. They were married. They lived in a little trailer and actually did fairly well on their own although they needed assistance with money. They had a public guardian that paid their bills and saw to their needs. The young woman had been sterilized by having her tubes tied at a fairly early age because she didn't understand that sex meant babies and she was definitely exploring her body as well as the bodies of the opposite sex. It was done to protect her.
She and her husband were a cute couple, but they could never have supported or cared for a child.
Many people with developmental disabilities can make it on their own to an extent, but they definitely need an amount of supervision.
Many 19 year olds aren't mature enough to be on their own completely so I wouldn't be in a rush to let your daughter go out into the world without help from an agency that knows how to help train and teach about living in the world.
Just because someone is of legal age, it doesn't mean they are capable of finding their way in the world, but many can do quite well.
Best wishes.
you have to apply to get guardianship over her, even though she is an adult she is not fully capable of taking care of herself, even if you choose for her to live in some kind of assisted living or something...basically you need to do this as quickly as possible before she decides to leave on her own & then you have a runaway situation which could complicate things...at least this is how it is in texas...
as to living on her own i would say assisted living at the least or possibly living in her own place with a caregiver, if she or you could afford that though...when is she ready if she functions at a 3rd grade level she may never be ready to live completely on her own but there are ways to give her more freedoms...look into programs for you and her in your area that teach people daily living functions, there are a lot here in tx i would hope there would be everywhere
Be sure to contact the Parent Training and Information center in Utah,
Utah Parent Center
2290 East 4500 South, Suite 110
Salt Lake City, UT 84117-4428
Phone: ###-###-#### Fax: ###-###-####
Toll Free: 800.468.1160 Español: ###-###-####
They will be more than happy to help guide you in this, and they have lots of experience and knowledge, and they are very nice people!
YOur daughter though a special needs person still has the same feeling and urges of a normal 19 years old---and that includes sexually. Yet in a means to be accepted by peers she may not understand the consequences of some of her actions (sitting naked next a a boy or group of boys can ask to be raped without the understanding of such.)
(keep in mind the story of a young teen MR girl who was raped multiple times by boys having fun--nothing has yet to happen to those boys with the exception of court fees and Made for TV movie)
There are assisted living homes throughout Colorado, so you may wish to look into one close to home. You and your Husband deserve a life too, thus do not feel quilt. Yet understand that no she cannot thoroughly on her own, and needs assistance, possibly a female roommate in an assisted living apt. so each can help as well protect each other. Assisted living can also help her get a PT job.
I agree with possibly looking into a group home type environment. My SIL used to work for the state (of KS) and she handled patients just like your daughter. Some lived in group homes others lived on their own but had home visits and their care was managed by their families. You have options to make a compromise you just need some help. A social worker also might be able to assist you with what to do and how to do it.
I'm truly sorry this is happening!!! how hard it must be to have a child that is a legal adult but still has the mind of a child!! Maybe I am misreading that - but that's the way it sounds to me.
Oh my!! Sounds like she is being taken advantage of by boys...when you have found her - what do these boys do or say? Do they realize she's mentally retarded or what? For my own sanity - since I can't be with her all the time - I would get her tubes tied or the depo shot...won't stop STDs but would ensure that she doesn't get pregnant....especially with the mental IQ of a 3rd grader...
I agree with your husband. however, your daughter is of legal age - how about a compromise? There are, most likely, group homes that you can go check out so that she is "on her own" but being taken care of.
I would also look into seeing if she qualifies for disability or some other program to help her on her own...
When it comes to money? I would not let her have her own account - FOR HER OWN SAFETY - so that she cannot be taken advantage of by someone.
I have read some of the responces and your update and I just want to add two things. Even thoguh she may not "need" to live in a group home and even though you are more than capable of caring for her yourself, you may want to consider it. The reason why is that she wants to have a bit of her own space and see what it is like to live away from home. Which is totally normal! She may benefit from the sheltered independence that a good group home could offer. And it may not be long term, she may find that in a year or so she wants to come back home. Also, you need to have some discussions with her about protecting herself from STD's. She may not realize how important that is, since she is on Depo she may not think that she needs to worry about using condoms. Just my two cents, best of luck!
