Sad, Mixed Emotions, don't read if not ...

[CC]

in the mood.

I know this board is hear to encourage new moms but I also think its here for us seasoned moms too, so I am gonna take a risk and post this

Chris is 14, will be 15 in just a few months and I sit here and wonder Hmmmm what next KWIM??

I as we all due fight so hard to prepare him for the next phase in his life but what exactly will that be??

I feel I need to get a plan in place for his future and just ignoring it doesn't seem like a good plan, KWIM??

Living on his own Hmmm not saying that is not an option for my guy BUT most likely not and that is OK BUT then what? Hmmm living with his Sis, sure I guess BUT not the most fair option to Kodi or Chris, least in my opinion. We are the ones that chose to have Chris not Kodi so I really don't want her to feel she has to be responsible for him 24/7... Group Home?? Hmm maybe BUT there are such a lack of them and most are not that good least not from what I have heard in our area

I know this subject SUCKS but one that we will all have to face one day and I am thinking Hmmmm something needs to be done to correct the options for our kids in the future. What can be done I have no freakin clue at this point but this will now be my new mission in life.

I talked to Colin tonight and he just said Hmmm well we will be like some of the other old folk down the road... still going t the amusement park with our son.... NOPE not what I want for the future, just being honest here, doesn't at all mean I don't love my Chris to bits just as I love my Kodi to bits BUT I didn' t think when I had kids they would be with us forever Geeze does that really make me bad??

Sorry for the long sad ramble BUT I think this topic has to be looked at more cause we ALL will be there one day KWIM Hmmm does anyone out there KWIIM??

CC ~

[ALLISA]

awww CC....I don't have much to offer you.....but a shoulder !

It is a very tough subject and one that needs much thought and prep to go into.

I saw this here many moons ago and saved it....

www.pathfindervillage.org/

I think we need an UnoMas Village !!

Hugs CC....

[Ericsmomma]

CC,
I totally understand....I think about this alot, since I am an "older" mom. My daughter is the one who will have the responsibility of taking care of Eric. She is very close with him (she and my grand daughters live with us), and his "neices", Victoria and Addison, are Eric's best friends. It is an awesome job, and sometimes I feel guilty about putting this in her life. Thats why we work so hard to help Eric with some independence, but now with this possible dual diagnosis stuff, I feel like I've just taken 3 steps backwards....Its alot for us as parents, and my daughter is a single mom...what if she marries someone who isn't "thrilled" to have a special needs person in their household? I'd hate to have her life based around whats best for Eric...very difficult situation for all. And I agree, good group homes are few and far between. Not many options out there...

[Jackie]

YES...this is a tough subject...and one ALL of us will have to face. But don't despair just yet...you really don't know what life holds for any of your kids at this point. They have dreams, you have dreams...and they seem to sort themselves out when the time is right. I do admit it helps to have an "idea" to aim for...a realistic one and many of you are now into school transition which does require you to put this into words on paper.

Just remember...nothing has to be forever and you are allowed to change directions at any time. Living options are changing and getting better and better. This is still a long way off CC.

I really do NOT recommend thinking that our kids sibs will become the caretakers...at least not physically. I think it's appropriate for them to be involved in the long term planning and trusts many of you will be setting up. And in many families they will always be there to step in and trouble shoot as well as add enrichment to their sibs lives.

YES I am lucky at the moment to have Emily in a situation where she lives with a sister. This was not MY idea...although I am very comfortatble with it now. Katie has promised me that she will not mind telling me and Emily if it ever becomes a problem...if she does then we will go from there. From visiting with Marnie who ran the SIBS program for a number of years at the NDSC conferences I think this is a big worry our typical kids have. So dialogue there is very important. My advice would be to avoid having them step in. They have their own lives to live and there are plenty of good options out there for people with DS.

Group homes are not for everyone but there are many very good ones. Emily has a group of guys with DS who live in one together and I wish she could have one with the same atmosphere. It is just like a big fraternity...they all really like each other and have lots of fun things going on all the time in addition to their jobs.

Most of our kids at 15 are not at all like what they will be as young adults...you will be surprised at how they mature if you do some risk taking and let go from time to time.

Also there are many good workshops and publications out there on these topics...and many school districts will bring in presenters about all this if you push them. Networking with other parents on message boards as well at large conferences if you can make it to them helps.

But it is also NOT inappropriate to worry about all this CC...I still worry a little bit everyday about Emily in the long haul. She is not excited at this point about leaving Katie's for a more independent life style and I worry how to encourage that. In some ways I think the transition to adult life was the hardest for me emotionally. Probably because we were talking about real life situations that I also was experiencing so I got more emotionally invested in it all myself.

This is a time in life where your most 'creative' side will be called into play...convincing the school and others that your child can do more than maybe you really think they can at the moment to give them a better chance. And most of the time you and others will be totally floored when they come through ;D

We all know that there are different levels of performance among people with DS just as there are with typical kids we have. There are high flyers, mid flyers, and those who prefer to walk on the ground...and all their needs are different. You have to begin by being somewhat realistic (now just 'somewhat'...LOL) and plan from there.

Take it from me...I think it is important for all parties involved to find a way someday for your child to live outside the home. I thought I would die when I realized Em was PERMANENTLY relocating...ask Susan...LOL. And...I still have my moments. But I know her life is much richer there than it was here and even though it is taking time...Ed and I are beginning to redevelop a relationship that does not include other people. In some ways THAT has been the hardest part.

CC I am there with you on this one...sorry to sort of hijacked your very important post.

And don't worry about new parents...they have their boats full at the moment with many other things. Everything in LIFE is not always a bed of roses...there are many bumps in the road for all of us and this is just one of them.

Thanks for sharing

Jackie

[steffipoo]

CC they have the most fabulous living situation for ppl in a town right by where we live. This town namely Culver City, is a town that has taken on the job on their own of taking care of and providing for the over 18 disability folks or whatever u want to call em. sorry not too pc here They have bought out so many houses for pple to live in under supervision and they have a fabulous time and work and have buddies they go on the bus with and have ppl who help n oragnize with em 24/7 all the ppl living there range from pretty severely mentally challenged to not so much. If ud like I can find the name of a few of em and send u a link so u can see if u have options wayyyyyyyy over there like this. Don't worry so much bout tomorrow. Easy for me to say eh? cause I make myself CRAZY looking too far ahead. either that or I am living in a constant stage of denial YOU DECIDE am I living in denial or day to day. LOL I prefer to think of myself living 4 today LOLOL. my husband may care to argue that poinr but hes sleeping andlol doesn't read here . hee hee (((HUGS))) Steff

[MB]

Start now.

Some of the most severly disabled young men have had great success living in frat houses. Behavior that would not be acceptable anywhere else is magically o.k. in a frat house.

There are some excellent group homes, you either find a way or make one.

I think Mr. Chris is going to surprise you.

mb

[rickismom]

Well, it is VERY good that you are thinking of it NOW! I would suggest that you look further into the idea of a group home. The quality of a group home often depends a lot on which organizing body starts it, so if the ones in your area are not so good, maybe try to start a home under the umbrella of a different agency! To start a home usually takes several years, so you are really not that early!!!
Also I would start thinking about employment opportunities. If you think that he can only work in a work-shelter, fine. But if you think that he could do something else (even if only a day or two a week)-- start preparing NOW. Think about what he might be cabable of/enjoy doing. Then think about the skills needed for that type of job, and try to get it added into his schooling program in some way. Look if there are after-school opportunities that would help him advance towards these goals.


If a sibling accepts the child with DS as a boarder, I have no trouble with that, BUT
1- usually either the sibling or their spouse won't want
2- the child with DS looses out on a lot of extra-cuuricular activities available to those in GOOD group homes.

I do encourage (even today, when Ricki is still young) a bi-yearly siblings meeting (family conference). I do this to encourage them to TALK and check about Ricki----I have a list of questions that has to be gone over. This is to help prevent the burden of Ricki falling on any one sibling after my death, and to impress on Ricki's siblings the knowledge that it will be up to them to see that she is always in a good situation.

An example of some of the questions:
- Are there any medical concers that need to be delt with? Any problems? Any preventive care?
- Is she happy where she is living? Does she get along with her co-residents? Does anyone hurt her (verbally, physically, emotionally, sexually) ?
- Is she involved in any physical activities or is she a couch potato?
-Does she have time/opportunities to do things that she enjoys?
- Are there things that she would like to do/learn that we can help her achieve?
-Does she have friends? Is her day full? Is she happy? tense?
-Does she have the opportunity to give to others? To feel connected to her family and community?
-Does she ever get a vacation? A chance to travel? To go to a movie or other entertainment that she would enjoy?
-Is she happy with her work situation? With the job itself? With her co-workers? Does anyone in her work envirment abuse her?
- Are there any life skills that she needs (and is willing ) to learn?

Those are just some examples. The idea is that her siblings should check up twice a year on her situation, and make plans as a GROUP to help her situation be a good one.
Just this week, we decided as a family that for my health (so that I have time for exercise, etc.) they have to take on some of my duties (a bit)-- and since there are still four unmarried siblings, that bit divided up is plausible.

[mollysmomma]

tentitively....molly is going to marry cody in houston, tx....we are going to buy a house in close proximity to his mom, brandi, then we will set them up in an apt situated between the two houses. Gainful employment will be in both's future.

This way, there will be mulitple families keeping an eye out...

My older children and I have discussed her future, should something happen to Larry and I both...and much to their dismay...i'm sticking to plan A....that may change as my kids grow...but raising molly is a full time job, and i would hate for any of their young adult lives to stop because of the responsibility. This decision is still underway, and meeting MUCH adversity with her sibs...

we think about it....but have nothing set in stone. ...and it's a good post. Something NEEDS to be set up...and recorded. Would hate it if someone else was left to make those decisions.


e & molly kate

[lorraine]

Sorry I don't really have much useful to add to this but I did want to say that as a 'New parent' it is REALLY important for me to get the whole picture of life with DS and of course that includes the teenagers and adults as well as the young ones.

I joined uno mas because I like the honesty that comes with the posts, and because I want to learn all I can from those who have already 'been there, done that'. KWIM?

I will be following Chris's story with interest

Take care
Lorraine

[victoriasdad]

wow , being an older parent i worry about this alot, my kids all fight over whos gonna take care of victoria when we are older, lol , i told them that that may be their plan now but as they get older their lives will change and they probably will want to be more focused on their own families it really is the scariest part of having a child with t21 , the future and the unknown, i know that didnt help but i just wanted you to know that you are not alone, god bless

[pmjc]

Nicky is 20 and I am the wrong side of 50 . some of my friends have older children who are now moving to live in sheltered housing or group homes which is fine but its not the thing for Nicky and I. He will be living with me 'forever' or until I am no longer around then my daughter will have him live with her. At a family conference we all decided against putting him in a home, no matter how good it might be the carers will not be his family and they will not love him the way we do. Maybe we are being selfish keeping him home but we don't think so.

[Emilysmom]

I'm glad you brought the topic up, CC. We do have to think about it and plan for it. And this post has brought out some great ideas!!! Ruth, I love the questions you posted! And Jackie.......you've offered some great thoughts too. There are plenty of things to think about and to include when we make our decisions. I know that Emily will continue to grow and mature and we'll have to take that into consideration when we look at her options.
I do know of several young adults with Ds in our city who live in apartments with a room mate, and a person who helps them. One of the girls is someone we know very well, and she is VERY happy! She has a job she enjoys, she shares an apartment with her best friend, she is a contributing member of our community, and she has a FULL social schedule!! Her mom says every time she calls to invite her home for dinner, her daughter invariably already has plans for that night!
I think that some communities have more to offer than others. CC, you live sort of close to Pathfinder Village, don't you? I'd love to check that place out...........it seems like such an awesome option.

Susan

[Emilysmom]

This post reminded me of a situation I became aware of recently at work. There was this 80 year old woman who was very sick and had been in the hospital for a week and had to be placed in the nursing home where I work after her hospitalization. We were told before she was admitted that there were some social issues within the home that we'd need to work on. Apparently, she had a 45 year old daughter with mental retardation and had never checked out any other independent living options for her. For the past 5 years, the daughter (who we were told functioned at around a 7 year old level) had been taking care of the mother, whose health had been steadily going downhill. There were no other siblings. The nieces had tried hard to convince the mother to allow them to get the daughter involved in supportive employment or other services in our community. The mother repeatedly said no; stating she had always been the daughter's caretaker and she always would be. (Who was she kidding?) During the mother's hospitalization, the daughter slept in the hospital room on a cot and was served meals from the hospital. As we discussed the whole situation and how we could/should help the family, I found myself getting very emotional!! Some of my friends suggested that it might be too hard for me. It was interesting because I kept relating to the Mother and how she must have felt she was doing the RIGHT thing for her daughter and I felt the daughter would be LOST without her. In the end, the family (all nieces......the only living relatives) met with the daughter and discussed the options and she said "I don't know what to do, but I know I can't keep taking care of Mom". When they mentioned the idea of a group home, she was ECSTATIC. She eagerly visited group homes and met with people who could help her get a job, and she loved the idea. She was brought to the nursing home to visit her mom and was very sweet to her, but you could tell she was eager to go back to the new friends she had made. It really made me think!!!!!

Susan

[CC]

THANKS ALL
Lots more to ponder bout, truly appreciate ALL your input.

Allisa yes Pathfinder OMG I was the one to post that here more then a few times. Honestly if I knew Chris would end up in a place like that OMG I swear to you guys I would be able one day to pass on in peace. BUT sadly its around $30,000 a year and I can't afford that every year KWIM BUT it is my dream for him

Two of our friends each have sons living at Pathfinder and both boys are 26 and 28 and they both just LOVE it there. But for us its just toooooo darn expensive

So unless I win the lottery, that option is not on the table

Thankfully we do have time but time goes fast and I just want to be educated, prepared and maybe even push for better options in our area if needed.

THANKS again you guys are the BEST of the Bestest

CC ~

[ALLISA]

Yikes CC...I missed the financial part of the virtual tour.....