Difficult decisions...( don't know if this is a vent or a cry for help~Oy...

[disney1990]

Minky - you have given Christian 15 years of love and constant support. We all have to let our children move on at some point in their lives and maybe it is time for Christian to enter the next phase of his and for you to enter into the next phase of yours. You have shown such love and courage through the years and maybe it is time to take a break. Whatever decision you make, will be the right one for you and your family. Take care.

 

[zachnsamsmommy]

Minky...I have lurked on your threads a long time, but never posted. I've always thought you an awesome mom for being such a good mom to Christian. My child is autistic, which is nowhere close to what you are dealing with...and that wears me out. I know you must need a break, and your family needs a break. I hope you can find a place for him that gives you a break, and him the services he needs, with peace of mind as well.

 

[BellePrincessBelle]

No advice since I can not imagine what this must be doing to you. Just hugs.

 

[samshane]

Please ignore the hurtful comments by people who have never walked in your shoes. I just wanted to send you hugs - I have read some of your posts and I commend you for all that you have done. I wish you the best with whatever decision you guys make.

 

[diz8297]

I am just sending to you. God bless you and your family as you make this transition.

 

[disneygals]

 

[golfgal]

We just went through a similar thing last year with MIL. She is very old, 90, and physically failing. She requires help with mobility, bathing, dressing, pretty much everything. Although SIL wanted to take her to her home, DH & I strongly urged to consider a nursing home. We live 400 miles away, so we are no help at all. I had a frank talk with SIL about the meaning of taking care of a dependent adult 24 hours a day. My words were "You're life will never be your own again. Your marriage will be affected, your friendships will be affected. You will never again have a spontaneous weekend away, go on a cruise, or have guests in your home without having to make arrangements for your mother. I don't think you fully understand what your taking on." Ultimately, we prevailed and MIL moved into a very nice nursing home about 6 miles from SIL. DH calls his mom several times a week and SIL stops in about once a day to visit. It's the best of both worlds.

I liken this decision to the one we are forced to make now. We have no relatives or friends who are able or willing to help with him. BIL recently had a tantrum while we were visiting them and blurted out "You need to move back down here and HELP YOUR SISTER take care of her mother. It's not fair!" DH eyed him carefully and said, "You're right, it's not fair. I tell you what, let's negotiate. We'll sell our house and move to Florida. We'll take a week taking care of Mom, and YOU CAN TAKE A WEEK WITH CHRISTIAN." Yeah, he backed right off of that...



This is exactly how I envision it for us. I'm pretty overprotective of Christian so I will have to guard against being a pest. I think we will enjoy him so much more when we can be relieved of the daily physical burden and concentrate on just being with him.

I had a long talk with DD17 today, to bring her up to speed. She as very mature and understanding about the plan. I didn't think she would be upset,that's not her style. She's very pragmatic. I made sure she understood that we wanted to place Christian so that she and DS23 would not have to take him into their homes and be responsible for him, especially when they'll be raising a family of their own. I told her that I expected the two of them to see that Christian has Christmas, birthdays, Thanksgivings,etc, and warm clothes, dental work, sensible shoes, and the occasional toy. And she agreed that she would do that.

I know that's a lot to put on a 17yo, but I felt it needed to be said. I want her to go off to college next year with the knowledge that we are not only taking care of Christian,but we're taking care of her and John in the long term.

Are you involved with the ARC program in your area? I know the ARC program here has a lifetime assistance program where you develop a care program for Christian that will help people know what you wanted for him if you can't be around-even down to how you want the meds administered, etc. It is a wonderful program. If you don't have one like it near you I can put you in contact with the people here. Basically it puts in writing what you just told your DD so she then has some ammo if others give her a difficult time.

 

[jerenaud]

Minky,

In her agency, the residents are SO well cared for. Staff is required to remember that the house "belongs" to the residents and to treat it that way. In her house of 5 residential men, there are 2 staff on duty 24/7. If there is ever a mark or a bruise or a rash, they are required to make notes and contact a physician. (They see a doctor much more than we do!) They get the residents out into the community as frequently as they can. The agency sponsors all kinds of activities in which the residents can participate such as bowling, swimming, basketball, choir, arts and crafts, etc.

has also developed special relationships with the families of her residents. QUOTE]

My uncle lives in a group home like this. He likes to get back after a weekend 'home' with his mother - it's boring at her house! Even though he's essentially non verbal he's in the choir and has been in plays. He's discovered that he loves acting; they just make sure to have a part that accomodates him. His social life is way better than mine!

The residents of the group home are fairly close, and the staff are really involved in their lives. Because there are so many staff, they each can find things that they enjoy within the house - one takes my uncle to baseball games, another takes him grocery shopping, but no one is forced to do *all* the chores while also caring for the residents.

Staff of previous houses (he's been in the current one for about 5 years, I think) and former staff of this one even came to my Grandfather's funeral. They've also gone out of their way to accomodate his visits 'home', as my Grandmother doesn't drive.

While it's basically not discussed, I know that the decision to institutionalize my uncle (in the early 60's) was incredibly hard on my grandparents, especially my grandmother. The decision centred around the well being of the rest of the family. However, he really is thriving in this environment, and that really helps her.

Minky - you have given Christian 15 years of love and constant support. We all have to let our children move on at some point in their lives and maybe it is time for Christian to enter the next phase of his and for you to enter into the next phase of yours. You have shown such love and courage through the years and maybe it is time to take a break. Whatever decision you make, will be the right one for you and your family. Take care.

The comment of the 'next phase' struck a chord with me. Due to a move, my uncle was not able to work at the sheltered work shop anymore. (I recognize that he's functioning at a different level than is your son, but I wonder if this is still relevent, at least in part). This was very difficult for him to understand, but he coped far better when it was framed as a retirement (ie a normal life event) than simply as something being taken away from him.

Good luck with your decision - it's so hard when there isn't a perfect solution.

 

[java]

Minky I am not in your shoes. I can only offer and trust that you know in your heart the right decision for your whole family. You are not abandoning him- you are looking into options to transition him into "adulthood" options.


When I was a teen I helped care for a mentally challenged man in his 20's. He was living with his parents and 3 sisters. I was there to just give them a free couple of hours a week. However I was able to do it because he was also small. He weighed only 50 pounds - he was the size of a 5 year old.

 

[Hidden_Mickey]

OMG I'm crying. Minky, whenever I read your posts, I am in awe of your strength. I know you've said before that this day was coming, and I wondered how you were able to take care of a child who was bigger than you. It is hard, that this day has come sooner than you thought, but I agree it will be best for the family. Try not to feel guilty about making a decision that will benefit all of you. You will get a break, and he will have other people to interact with. A group home sounds like fun. Many years ago Christian might not have survived this long, or you would have been forced to institutionalize him when he was much younger. Those places sound awful. Luckily care and empathy for the handicapped has improved so much, and group homes are a wonderful option. I hope that the move is not too hard on him or the rest of your family, and that you all come out the other end of the tunnel better for it.

 

[minkydog]

Are you involved with the ARC program in your area? I know the ARC program here has a lifetime assistance program where you develop a care program for Christian that will help people know what you wanted for him if you can't be around-even down to how you want the meds administered, etc. It is a wonderful program. If you don't have one like it near you I can put you in contact with the people here. Basically it puts in writing what you just told your DD so she then has some ammo if others give her a difficult time.

Yes, we are involved with ARC. I am not fully familiar with all their programs. We have only needed the respite program(Christian goes to a respite home for a weekend about every 2 months or so.) But I think I will call them on Monday and find out what else they might have to offer us. They know Christian and us very well and they have always done their best to see that Christian is well cared for.

 

[tinytreasures]

as a mom who will be in your shoes in a few yrs for 2 or more of my children, you have my full support on doing whatever you need to do for Christian and your family.
I have been a foster parent for many yrs now and know how much better a parents life can be once the stress is taken away. The child and the parent both thrive (not the same thing here but you know what I mean)

 

[golfgal]

Yes, we are involved with ARC. I am not fully familiar with all their programs. We have only needed the respite program(Christian goes to a respite home for a weekend about every 2 months or so.) But I think I will call them on Monday and find out what else they might have to offer us. They know Christian and us very well and they have always done their best to see that Christian is well cared for.

http://www.arcgreatertwincities.org/lifetime-assistance.aspx

Here is a link to the Twin Cities program so you can get an idea of what it is.

 

[KatieA]

minkydog,
After reading your post and all of the others, I am sitting here crying because I will be in your shoes one day. My son is 14 and has autism and is mentally disabled and mostly non-verbal and functions approximately like a 6 yr old. It was so hard just for me to make our will and say who will care for him is something should happen to both of us. Fortunately for us we both have our health. I know the feeling that no one will ever love my son as much as I do and I don't know how I will make that decision when the time comes. I need to lose weight and I keep telling myself I need to live forever so I can take care of him. We also have a 12 yr old daughter and we also base out activities and restaurants on what does our son like to do or what does he like to eat. I do not regret putting his needs before mine but I do feel incredible guilty if I have to choose between the two kids. Our marriage has also been strained due to the situation. I send you my prayers and hope everything works out for the best.

 

[golfgal]

minkydog,
After reading your post and all of the others, I am sitting here crying because I will be in your shoes one day. My son is 14 and has autism and is mentally disabled and mostly non-verbal and functions approximately like a 6 yr old. It was so hard just for me to make our will and say who will care for him is something should happen to both of us. Fortunately for us we both have our health. I know the feeling that no one will ever love my son as much as I do and I don't know how I will make that decision when the time comes. I need to lose weight and I keep telling myself I need to live forever so I can take care of him. We also have a 12 yr old daughter and we also base out activities and restaurants on what does our son like to do or what does he like to eat. I do not regret putting his needs before mine but I do feel incredible guilty if I have to choose between the two kids. Our marriage has also been strained due to the situation. I send you my prayers and hope everything works out for the best.

Did you set up a supplemental needs trust when you did the will? Did you FUND your trust with life insurance? Doing these will help put your mind at ease knowing your son (and your DD) will be taken care of if you are gone.

Our neighbors have a 12 year old son that sounds like he is about on the same level-he is somewhat verbal though. They have established some nice relationships with a couple teachers at their son's school and they babysit their son when they go on vacations (Disney mostly for them). It has been wonderful for them. The teachers will tag team so one will stay for a couple days and then the other will come. Since they know him and are used to taking care of him it works out great. Our oldest babysits for them frequently so they can go to activities with their other 2 children. Our county has some wonderful programs for families with children that are disabled that help financially so they CAN do these things. I know the program they have is a sliding scale fee (they pay about $200/month-and they make a good salary so this isn't a bad rate). For that $200/month all care for their son it taken care of-babysitters, medical, etc. They kiss that check every time they send it off (ok, not literally).

 

[Freyja]

You are such an amazing mother. I cannot imagine what you and your family are going through but I am convinced that you will do what is best for your family as whole.

 

[LJC1861]

Minkydog,

You, Christian and your family are in my thoughts and prayers.

I am an administrator for 2 group homes serving teens and adults with autism and behavioral challenges. I have been working with DD adults for going on 30 years now.

DO NOT feel guilty about making the decision to place Christian in a group home setting. You are doing this out of love for him and for the rest of your family. It is far better to place him when you are ready to, rather than in a time of crisis. You have to take care of yourselves as well as Christian. If you are not healthy and strong you will not be able to give him the care and love that you so want to.

My staff and I work tirelessly to ensure that our residents are happy, healthy and loved. We are essentially, the eyes, ears and hearts for the parents when they cannot be there. Although we will never love our residents as much as their families do ( it is simply not possible) we do try. Speaking personally I love each and every one of the 12 in my caseload as if they were my own. When they make progress I rejoice and when they hurt, so do I.

In all honesty, sometimes it is difficult to keep the "therapeutic" relationship purely therapeutic and I think that it is okay. I think it is impossible to care for our residents and not love them. Anyone who comes to our agency looking for just a 'job' generally doesn't last very long.

Although the decision to place Christian is heart wrenching, ultimately it will be the right decision for you and your family. I pray that the search for the right home for Christian will not be too difficult.

All the best as you begin this next phase in your lives.

Linda

 

[minkydog]

minkydog,
After reading your post and all of the others, I am sitting here crying because I will be in your shoes one day. My son is 14 and has autism and is mentally disabled and mostly non-verbal and functions approximately like a 6 yr old. It was so hard just for me to make our will and say who will care for him is something should happen to both of us. Fortunately for us we both have our health. I know the feeling that no one will ever love my son as much as I do and I don't know how I will make that decision when the time comes. I need to lose weight and I keep telling myself I need to live forever so I can take care of him. We also have a 12 yr old daughter and we also base out activities and restaurants on what does our son like to do or what does he like to eat. I do not regret putting his needs before mine but I do feel incredible guilty if I have to choose between the two kids. Our marriage has also been strained due to the situation. I send you my prayers and hope everything works out for the best.

I totally get it. We had our health too, about 15 years ago. Things change as we age, often through no fault of our own. Don't count on living forever. I understand the difficulty naming a guardian, too. Nobody will ever be as good as a parent, ya know? When we were going through this process someone said to me, "Who would you want called if you suddenly died and the choice was your GUARDIAN or FOSTER CARE?" Holy cow! That put in in a whole new light. The guardian we ultimately chose is not the warm, fuzzy person that I am but she will be diligent about his care and I have no doubt that Christian will always receive the attention he deserves.

Did you set up a supplemental needs trust when you did the will? Did you FUND your trust with life insurance? Doing these will help put your mind at ease knowing your son (and your DD) will be taken care of if you are gone.

This is great advice. We made our wills about 7 years ago, about the time that DH first got real sick. My father died intestate(without a valid will) and it was a mess. It really opened my eyes to the REAL MESS we'd have if both of us died without establishing guardians, and such.

For our situation, we decided to have separate guardians for our chidren. Christian is such a lot of work that I really felt it would be unfair to expect someone to take on our other kids plus him. Now that DD17 is almost an adult and DS23 has his own place, it's not as big an issue. However, we still have a guardian for Christian. We do not expect this guardian to be able to physically take care of him and we have talked with her about placement(*assuming he's not already placed) She will have the power to manage his finances too.

The elder law attorney that we used helped us set up a Special Needs Trust for him and it will be fully funded at our death. We have changed our beneficiaries on our life insurance to "Special Needs Trust Fund for Christian___". The other kids will get smaller amounts, plus the house. We've tried to explain our decisions to the kids, but I'm not sure they really understand it. I don't want them to think we loved them less. In fact, because we love them so much we don't want to leave them financially or physically responsible for Christian. Since they wll have he ability to make their way in the world and he will not, we want to make sure that it doesn't fall to his sister and brother to pay his way.

 

[mamacatnv]

Christian keeps coming over and sitting on my lap, giving me hard hugs. Do you think he knows? We haven't talked about it in his presense. Could he sense our upset, you think? Or maybe he's trying to say "it's okay, mom."

This made me teary, I cannot imagine a day in your shoes let alone 15 years.

I think that is exactly what he is saying. You have given Christian your all for as long as you could, it's time for you, the rest of the family and Christian to move to the next phase and somewhere he knows it just like you do.

 

[DebD4T]

God bless you and your family and may you find peace with whatever decision you make.