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

[DisTeach1]

I hope that you get the support you need from social workers, that is my fear and my prayer for you. I had a friend in a similar situation with a 13 year old foster son she had taken care of from an infant. She was crucified and got no support when she put him in a group home. I hope it's different for you. You may have to knock on more than one door to get support. Do you have a clergy man that can help you?

 

[Bluestars]

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.

That's very well said. I wouldn't worry about posters like that. Until someone has walked for years in your shoes, they have no idea what it's like. It's easy to judge other people when you aren't dealing with their hardships. Some people lack empathy.

You sound like a loving, caring parent.

 

[C.Ann]

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)

 

[akhenaten]

I had a long response to this typed out, but it isn't worth the points. Let's just hope you never have a difficult choice to make.

Amen to that!!

none of us knows what life has in store and we all try and makes the best choice at the moment...

minkydog.... i hope you find a wonderful group home for christian and get the support you need !!

 

[minkydog]

I had a long response to this typed out, but it isn't worth the points.

Sorry, but this just made me laugh!

 

[EveDallas]

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.

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.

Please don't listen to people like this. You are making the best decision for your entire family, Christian included. People who have never been in this position can't begin to comprehend the crushing daily responsibility.

 

[kirstenb1]

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)

Must be nice to be perfect.

 

[VillageMama]

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.

 

[Mouse House Mama]

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)

Well aren't you just a peach.

OP- Good luck with whatever you decide. As a parent I know the love we have for our children runs deeper than the sea. Doing what is best isn't always what is easiest. You have some hard choices to make. I hope you do what is best for all of you.

 

[kirstenb1]

Minky, our Richmond Children's Hospital has a "Transitional Care Unit". It's a residential program for children who are severely handicapped. Is there anything like this where you are?

As you've stated Christian will need residential care at some point. I literally can't imagine how much work and stress you guys have on a daily basis. I'd like to pray for you, if that's okay.

 

[Holly]

I live a few houses away from a group home for four adults with autism. It's a nice raised ranch with a fenced in yard and constant supervision. I often see the families of the people who live there visiting and outside having picnics in the yard.

There are all kinds of options. It's not the end of your life together but just a new path together. Good luck with whatever you decide.

 

[minniecarousel]

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)

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.

OK, I'll stop now too, regarding this, before I type out something I'LL regret!

minkydog - I've seen so many of your posts and wonder how you manage. I think you're wise to see what other help you can get. It sounds like it's time.

Hang in there.

 

[ajk912]

No judgement here, just tons of P&PT. I think many of us would do the same in your shoes, considering all you have going on. Tons of luck, and please keep us updated!!!!

 

[horseshowmom]

That's very well said. I wouldn't worry about posters like that. Until someone has walked for years in your shoes, they have no idea what it's like. It's easy to judge other people when you aren't dealing with their hardships. Some people lack empathy.

You sound like a loving, caring parent.

I agree completely...

Let me add that I know a woman who had to make a decision similar to yours when her son reached young adulthood (his teenage years). This woman was a single parent and was always a wonderful mother to her son.

Her son was further along in mental development (that of a child older than your son). His transition has gone extremely well. 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).

Only you know what is best for your family, but I agree that destroying yourself should not be one of the options.

 

[chager]

you and your family are in my prayers. I have friends that will be in your shoes in 10 years. Your sons story is so similar to their son's. It was almost 2 years to get a dx and even then things change daily it seems. They currently have a nurse there to help on a daily basis. Their son is wheelchair bound and can do absolutely nothing for himself. He is an adorable 5 yr old right now, but as children do he will grow up. Praying that you can get the help, respite, and support you need!

 

[DizBelle]

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.

Of course this is a hard decision. That it is so difficult is telling of how much of a caring person you are. But, you do have think about the well being of everyone in the family.

Think about it this way. You know how much you have learned about love and caring having Christian in your life? Sharing him with the folks that would be living and working in the home with him would also learn about loving and caring because of him.

You are not a bad person or mother. At all. Period. To do the best for Christian, you have to take care of yourself. There is nothing wrong with that.

 

[VillageMama]

The St. Louis Center is a residential facility for boys and men/women with severe disabilities that is run by the most amazingly dedicated group of priests and staff.

It is near me and we are blessed to be involved with them occasionally.

http://www.stlouiscenter.org/

Maybe there is something like this near you?

 

[MnMomtoboys]

You all are much nicer than I am. Anything I could say would get me banned.

Minkydog as one special needs parent to another

 

[golfgal]

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. Our neighbors in our old house were a group home for women. They weren't as severely handicapped but they needed a lot of supervision. They had a house mom and several aids around the clock (there were 4 women living in the group home). They had a dog that they walked, a garden in the back yard, a swing on the front yard so they could sit and watch the neighborhood. It was a very nice set up. Is moving him to a group home really any different then sending a child off to college and off on their own, not really. You have to do what you have to do and a group home is a MUCH better alternative then having Christian run over by a car because you had to go to the bathroom. Stop beating yourself up, you have done WAY more than most people would in your situation. Pat yourself on the back for raising a loving son and think of this as sending him off to college.

 

[poohbears5]

Minkydog I am praying for you. I have read your posts about your family and
you have done a great job and dont listen to people that dont have a clue.