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

[almburr]

Tons of to you and your family. You are not giving your son away, you will not be losing him. You are doing something that needs to be done sooner than you would liked. You need a chance to breath.

I bet every family that has ever delt with something like this felt like they were unfit parents. All go through that thinking 'I will always be able to care for my child, they will never need to go to a group home'.

There are great care groups out there, you will find one if you havent yet.

You and your family are in my thoughts. For all the bad mouthers out there, Zip it! Until you have to deal with something like this you have no clue!

 

[phorsenuf]

Do you receive any respite or have the opportunity to? Maybe even a few hours a day would help.

 

[nmmom95]

After reading many of your posts, I'm always amazed at how well you handle everything. I agree with everything C.Ann said.

 

[disykat]

Many prayers and (((hugs))).

Christian's life has inherent, priceless value... just as much value as the most able-bodied person's.

I wish peace and comfort for your entire family.

Absolutely! I have a cousin and a good friend who have kids they had to find alternate living arrangements for when they were teens due to the amount of care needed. Both have found group homes nearby where their kids are absolutely thriving! They see them regularly and love them. I have also known several families over the years who have had children that needed special care even further from home - a difficult decision, but done in love for their child and their best interests.

You are in no way abandoning your child! Every parent sends their child off to be taught and cared for by others at some point - whether it's daycare, school, off to college, or out on their own.

 

[clh2]

Minky - I share the opinion of many of the others who have responded to your thread.

I also admire you for what you deal with on a day in and day out basis. I could never handle a fraction of what you have on your plate.

My guess is, it is going to take a while to find the right solution for your family and Christian.

It's time.

 

[Scurvy]

HOLY CRAP! I wouldn't believe this if I hadn't seen it with my own eyes! I've been on the Disboards for a long time & I can't imagine why you'd even comment like this.

I agree! I never would have thought anyone would say anything that horrible on here. I think that was probably the worst thing I've ever seen on these boards.


Minkydog, you are an amazing person. I'm sorry it has come to this for you, but I know you are doing the right thing. I hope you are able to find the perfect group home for Christian. As with most parents and their kids, you won't be able to be there for him forever. I think it's good for you to get him settled somewhere while you are able to make sure he's safe and happy, and while you can still spend time with him. I imagine that will be much easier on him than it would be if he suddenly lost you and then his whole world changed.

 

[DeluxePrincess]

I can't imagine what you are going through. Before you make any decisions, seek out support groups for parents who have been through what you have. If you are not receiving counseling, you should start so that you can really talk this through with someone. You'll know in your heart what's best for everyone involved.

 

[minkydog]

It's not like the family abandoned him (and you certainly have no intention of doing that either). He comes home from time to time but is so comfortable in the facility that he's in that he's always eager to get back there (which certainly makes his mother feel better).

This is the way we plan to handle it. I'm hoping that he can be placed somewhere in our county. We've been on the waiting list for 8 YEARS.

Whatever you decide to do, please don't feel guilty. While putting Christian in a group home may be a little difficult for him, it certainly sounds like it would better for the family as a whole. I'm sure he will adjust. Who knows, he just may get a real kick out of activities with other kids in the same shoes as he is.

I think Christian will adjust very well. He has no fear of strangers. If I shipped him to your house right now, he'd be happy as a clam and assume that ya'll just loved him. We take him to respite for a weekend every couple of months and they take good care of him, take him to McDonald's, to the park, to the mall. They even took him to see Santa one time(he didn't like that big red, hairy man!) When we drop him off he runs to the back of the house, where "his" room is. If he could talk, he would say "See ya!"

I have a 15 year old son and there is no way I could physically take care of him if I had to. He is about 8" taller than I am and a lot stronger.

Pat yourself on the back for raising a loving son and think of this as sending him off to college.

Good analogy.Christian is almost 5'10" now, about 120-lbs. He is fully 7 inches taller than me and very strong, like a normal teen. With no self-help skills, he requires assistance with the most private routines. I don't mind doing it--don't think this is a matter of "I can't stand diapers." Toileting is the least of our worries. What I'm worried about right at the moment is throwing my back out. I herniated 2 discs about 4 years ago and reinjured my neck on Monday. I sure don't want to end up with something that causes me life long pain(or even short term pain. I just don't want pain! )

I have a DD17 who will be going off to college next year and I wouldn't think of trying to make her stay home. She needs to go away so she can learn to live on her own. She needs to do it for herself and no one else. Christian will do the same thing. Sooner than we thought, but in the end I think we will all be better for it. I think if DH & I, and DD17, could get a break on the caregiving, I know we would happily visit him and do fun things that he likes to do.


ETA: It doesn't help that our nurse couldn't come tonight and he's not coming tomorrow either. DH is already in bed. I just dressed and diaperd Christian and he fell asleep on the couch. I'm going to go upstairs and get DH to help me wake him up and try to get him up the stairs. Can't leave him in the living room. No telling where he'd end up by morning.

 

[SnowWhite607]

Sorry you are dealing with this - but didn't you want to do this?

If I remember correctly, you were advised to abort because of the severity of Christian's problems. You made the decision to have a severely handicapped child.

I just cannot feel for a person who decides their path and then 15 years later can't deal. You had options.

(this is not intended as a debate on abortion)

Okay, seriously, did you REALLY feel the need to say that?? Not only was it extremely rude and thoughtless, apparently it was incorrect information also.

Minkydog, I hope you find the right solution for your family. Thinking of you and sending you many hugs.....

 

[dislaney]

 

[asta]

Minkydog - I don't have any special words of wisdom but I will say a special prayer. And, by the way, I think you sound like a good mom who is facing this with love.

 

[PrincessBelle09]

Okay, seriously, did you REALLY feel the need to say that?? Not only was it extremely rude and thoughtless, apparently it was incorrect information also.

Minkydog, I hope you find the right solution for your family. Thinking of you and sending you many hugs.....

Or perhaps can't feel at all...geez.

Minkdog - I will be praying for you and your family. I cannot imagine facing such a decision.

 

[kacaju]

Having a family member who is disabled, I completely understand what you are going through. My Mom watched this baby (she is my Dad's cousins child) from the time she was born until she was in her teens. I know the heartache her parents went through, just as you are. It never gets easier, but you need to do what is best for you and your dh.

 

[tonilea]

Praying this all works out better than you could have dreamed!

 

[minkydog]

Do you receive any respite or have the opportunity to? Maybe even a few hours a day would help.

Yes, we receive 48hrs of out-of-home respite about every 2-3 months. Sometimes we get lucky and get it once a month. And we have a nurse who comes in every evening for a couple hours to help us with Christian's exercise and evening care.

I think it's good for you to get him settled somewhere while you are able to make sure he's safe and happy, and while you can still spend time with him. I imagine that will be much easier on him than it would be if he suddenly lost you and then his whole world changed.

Exactly. He will definitely outlive us. I have a friend who had this happen. Her husband died and she became ill. All of a sudden her 40-something mentally handicapped son had to undergo emergency permanent placement and it was VERY hard on him and on her. I would never want one of my kids to go through that!

I can't imagine what you are going through. Before you make any decisions, seek out support groups for parents who have been through what you have. If you are not receiving counseling, you should start so that you can really talk this through with someone. You'll know in your heart what's best for everyone involved.

Actually, I do have a therapist, one who coincidentally has many years experience working with developmentally disabled clients in group homes. She and I talked long and hard about this on Wednesday, in fact. She is also of the mind that it's time. She has offered to write a letter to the powers that be in favor of placement now.I"m sure we will be talking a lot more about this.

I haven't been able to find a good caregiver support group. I live in metro-Atlanta, so surely there must be something out there. I did attend a support group for parents of special needs kids a few years ago. I didn't really fit there, though because all their kids were much more functional even though they were all mentally handicapped. The topic one night was "Problematic Behaviors" and every parent went around the room telling about their kids who bite, hit, scream, pinch,and curse. Christian doesn't have any of those behaviors. He's a very pleasant, easy-going kid all the time. The parents accused me of lying! I decided pretty quick that wasn't a good support group for me. I"m going to contact the Marcus Center in Atlanta. Maybe they can help me find something better.

 

[kim]

Many, many hugs, prayers and blessings to you. Decisions regarding the long term care for a loved one are some of the hardest anyone can face. I pray you'll be able to find the right people, place and everyone will have peace in their lives and hearts.

 

[DeluxePrincess]

Actually, I do have a therapist, one who coincidentally has many years experience working with developmentally disabled clients in group homes. She and I talked long and hard about this on Wednesday, in fact. She is also of the mind that it's time. She has offered to write a letter to the powers that be in favor of placement now.I"m sure we will be talking a lot more about this.

That is good news. I'm glad you have a therapist with experience to talk to. Seems like you have already thought long and hard about it and this is not a rash decision. Sometimes the most loving act is the hardest to do.

 

[DMRick]

I just wanted to post to let you know how eloquently you posted. You really showed that you have class in this response to a note that never (IMO) should have been written to you. I would have had points for sure, if I had had to respond.

I commend you for all you have done for the love of your son. You sound tired..I hope you get a much needed break, and that you are able to find a great group home for your son.

Actually, no, we didn't know that Christian would have a disability, let alone a profound mental disability. We were not advised to abort and I wouldn't have done that anyway. Christian falls into that very small category of people in this world who will never be able to care for themselves in any way. We had no idea--it took two whole years of extensive testing to even get him diagnosed.

I don't think anyone who finds themselves dealing with a handicapped family member thinks in the beginning "I need to ditch right now because I just don't want to deal with this." Disabilities don't just happen at birth. My DH didn't become disabled until he was 47, through no fault of his own. He just got sick with an autoimmune disorder. Do you think I should disown him now that he's not a fully function member of society? I certainly didn't sign up for a disabled husband. But I love him, so I will do what I can to keep him going. What about elderly parents with alzheimers? It's not uncommon for them to became so debilitated that they need round the clock nursing home care. Should we maybe lace their jello with antifreeze? Should we punish their daughters and sons for making the decision to place their full-care parent so that they can have a life of their own?

My issue is that I'm getting older and I have chronic health issues of my own. Not as severe as DH, but they do impact my life. The constancy of Christian's care just never goes away. It's wearing us down. Would you say it is okay for us to work ourselves into a early grave for this child, after which time he will go to a group home anyway? Are parents required to give up themselves for their children? I think everyone here understands that "some day" our children are going to grow up and move away. Why would you think that older parents of a severely, profoundly handicapped child should be made to keep their child home to the detriment of their own health? That just doesn't make sense.

But thank you for your comments. You weren't the first with that particular nugget and I'm sure you won't be the last.

 

[teskak]

I agree it is time, if only to give some benefit to your daughter, who will be carrying the caring and responsibility burden for years after you are gone.

Relatives of mine had similar problems with one of thier 2 children, not directly an intellectual disability but severe kidney disease from birth leading to eventually 4 kidney transplants before he passed away aged 40. Well during all of the sicknesses, they used up all of thier energy and focus on keeping thier son alive and there was nothing left over for their older daughter.

She carries the hurt and resentment of not being close to her parents and always coming second in thier world.

The constant caring is ageing you, and nobody wins if your psych gets out of balance, if mum is not there then it will age everybody more.

It is time

 

[TI double GGER]

I am a retired special ed teacher, every time I see older parents (not that I'm calling you old Minky!) with a disabled child I worry about what will happen when they pass on. IMHO I think it may be better to make a change while you and your DH are still able to help him adjust. There are so many different options out there I hope you find someone to help you figure out what is best for him and to get you through all the paperwork. Don't feel guilty for wanting to take care of the rest of your family. I often read your posts and your love for Christian is very evident. You are in my prayers.