It is beginning to dawn on us...

Discussion in 'Coping and Compassion' started by minkydog, Apr 8, 2007.

  1. minkydog

    minkydog DIS Cast Member

    Dec 8, 2004
    that the time for placing Christian(12) in a home make be coming sooner than we had hoped. I've been sick all week with bronchitis and pneumonia. DH has been battling this virus, trying to not get his lungs enflamed, trying to take care of me and get enough rest himself ( he is retired due to severe lung/heart disease.)

    The kids are out of school on Spring Break,which means Christian is at home all day. He's severely mentally retarded/ autistic and requires 24hr supervision. He wears diapers, needs assistance with feeding, dressing, bathing, etc. and needs to be in constant touch with one of us when he is walking outside due to some off-balance mobilitiy issues. He has seizures as well. :upsidedow But he has a sweet personality and is a joy to be around.

    During the school week he has a tight routine which keeps him stable,but this week has just gone to hell in a handbasket. DH became overwhelmed with him very quickly and it has taken a lot for me to be able to assist. This child is over 100lbs now and is almost 5'1"--he will likely top out at over 6ft. When he has a mind to do something, he is strong and stubborn. He can knock me and DH off our feet and I have fallen with him twice this week. :sad2: Christian can pull away so fast and has no sense of danger.

    It has just been so glaring this week that we are approaching a crossroads :sad1: We always knew it would come. Christian has the mind of a 1-2yo; he will never live without supervision. But I had supposed that the day would come later, say after he turned 21. Something clicked with me this week...I think he might need to be placed before the end of high school. I don't think I will be able to care for him for 10 more years. He's too big, too heavy. The load is almost too great to bear, especially since DH can't always keep up. I feel like Atlas, holding up the weight of the world. One false move and everything could come crashing down.

    This is not a need for respite. We have Christian go to a respite provider at times. This was a wake-up call--our son is going through puberty. This is the beginning of him becoming a man.:sad1: I'm 50yrs old. When I'm 60, he'll be 22. DH's health is slowly, steadily declining so I can't count on him to have the ability or strength to care for him for another 20-30 years. The realization is not new, but it is painful. No one wants to place their loved one in an institution. But sometimes the circumstances warrant a plan.

    I think I need to get in contact with our local ARC group and start getting the ball rolling. It can take up to 7yrs to get placement in this area. Don't want to miss the boat.
  2. Goofyluver

    Goofyluver <marquee behavior=alternate><font color=red>Knock

    Oct 31, 2006
    Hugs to you and your family. As the mother of a disabled child, I empathize so much with your situation. Please accept my wishes that your family finds peace, with whatever your decision may be. You are his mother. The decision you make will be the right one.
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  4. sameyeyam

    sameyeyam <font color=royalblue>Cancer didn't take my life,

    Apr 20, 2006
    Sending a great big hug and lots of prayers for your family. My sister has a son that has similar problems as your son. Tyler is a very sweet boy that is now 16yo.

    A few years ago my sister placed him, not into an institution, but into a special foster home that had experience dealing with children that required special assistance. Unfortunately that home didn't work out as well as she had planned. However, his assistant at school was a young lady that wasn't able to have children of her own and applied to become his foster parent. She has taken the necessary training and he has now lived with her successfully for several years. We consider her to be a blessing.

    My sister went through a lot of angst and worry about placing him somewhere. She was a single parent trying to raise 3 children and just couldn't handle his special needs on her own.

    She now realizes that this is probably the best thing she could have done for him. He qualifies for so much more medical, physical therapy, schooling, etc. than he did when he lived at home. All he qualified for then was respite care. She is still able to remain a large part of his life, she has him for xmas break, several weeks in the summer, during spring break, etc... She works closely with his foster mother and social workers in setting up yearly plans for his care & education.

    While this may be a difficult decision for you, just know that you will still get to be a big part of his life even though he may not live with you.

    Take care and best wishes to you on this difficult journey.:love:
  5. onesadduck

    onesadduck Not so sad right now

    Mar 16, 2007
    Awww. I can sort of almost say I know how you feel. My little sister had seizures, mental retardation, sensory integration problems (knocked us over all the time, often just when trying to hug us), and a TON of other medical problems. She, too, required round the clock care, and surveilence. We always worried about when she would need to be placed (it turns out she didn't need to be as she didn't survive long enough). And she had two healthy parents, and two healthy sisters to help.

    Hugs :hug: to you and your family. I know this must be hard on you, but I think you are wise in thinking about this now. Any later might be too late. I also want you to know that you are stronger than I ever could be. I could not have gone on in your situation for twelve years (being the main caretaker of a child with autism and the other problems you described, as well as taking care of a husband with lung problems). You are a great person. I wish you the best.

    Stay strong,
  6. Mackey Mouse

    Mackey Mouse <font color="blue">Me read the Navigator? I don't

    May 21, 2000
    Hugs to you, I think the first step you have taken by realizing that physically you and your husband cannot take care of Christian as he matures... I hope all goes well with placement for him and he does well in his new surroundings..

    Just know if you need to talk we are here. I cannot realize this firsthand but I have a cousin who has been home with his parents since day one, no schooling, no nothing, not sure why, maybe my Aunt would never let him go or he was before the time when they helped the mentally handicapped children, he just missed it all. Anyway, I know my Aunt is up there in years and I wonder what will happen to sad. You are doing the right thing here for all of you. Hugs again.
  7. Pea-n-Me

    Pea-n-Me DIS Veteran

    Jul 18, 2004
  8. JunieJay

    JunieJay <img src=

    Aug 10, 2006
    Please know that I'm praying for you, your husband, and Christian. :grouphug:

    Your emotional strength is humbling. I wish you all the best. I've read your posts over the years and I've always been so impressed with how well you seem to hold onto your sense of humor, grace, and compassion, even under the most trying of times. I'm sure whatever decision you make will be the best one for your family. Holding you close in my heart. :grouphug:
  9. mommasita

    mommasita DIS VETERAN Moderator

    Aug 3, 2004
  10. safetymom

    safetymom Super Moderator

    Aug 13, 2001
    Sending hugs and prayers while you deal with this. I know you will make the right decision for everyone.
  11. arminnie

    arminnie <font color=blue>Tossed the butter kept the gin<br

    Aug 22, 2003
    I have a dear 80 year old friend who has a 50 year old son with CP - he has severe mental and physical impairments. He is just a sweetheart, and everyone loves him.

    He has been in a home since he was about 8 or 9 (I did not know the family then). But he is still very much a part of the family. In his case the home was able to teach him so many things that he could not learn at home.

    About 10 years ago he moved into a group home with other men and resident counselors. He is SO happy. He just loves it there.

    He comes home often for weekend visits. His mother is no longer able to take him, but his brother and his wife love him dearly and have him once or twice a month.

    His mother's health is failing. It is so comforting to her though to know that her son is being taken care of and will be taken care of. When she passes or has to move into a nursing home herself (may happen sooner than later) his life will not have the severe disruption of being moved from the only home he's ever known.
    And sometimes it is necessary to get the best care for your loved one.

    I wish you the very best in making your decisions.
  12. agnes!

    agnes! <marquee behavior=alternate><font color=darkorchid

    Apr 17, 2000
    What a decision to have to make. Words fail me, but would a hug be ok :hug: ?

  13. minkydog

    minkydog DIS Cast Member

    Dec 8, 2004
    Thank you for your words of encouragement. It means a lot to know that some of you also know and understand our pain. Most of the time we just rock along, putting out one fire after another, not noticing the big picture. then something happens which makes us see our son the way the world sees him:guilty: and we feel such a loss. It's hard to put into words. Our real life friends have a hard time dealing with it--their pain & horror are just too overwhelming. So we try not to burden them with our fears and tears.

    Ah,well. I can't stay in that place for long. Thanks for listening. You are good friends:flower3:
  14. Christine

    Christine Would love to be able to sit on

    Aug 31, 1999
    I'm sorry you are going through this. Sometimes those "wake up" calls just aren't nice. My heart breaks reading your post and knowing the decisions you have to make with your child. Please know that I am thinking of you and hoping that it all works for all of you.:hug:
  15. Makua

    Makua Mouseketeer

    Apr 18, 2006
    Just a little note from the "other side". I taught for many years at a residential school for the mentally handicapped. Speaking for the children I worked with I can tell you that it became their home. I think many of them felt it was a place of safety, everyone was "just like them". There were many levels of disability and often the more abled helped out the less abled. It's amazing what peer pressure can do for behavior, these children often understand alot more than we think. I can't tell you what you should do but it may be to his advantage to be placed when he is still young. As another poster said many benefits will be available to him that he cannot get now. The therapy is 24/7 not just during the school day, they do so much better with continual structure. I can also tell you that I loved these children and it was the same for most of my co workers. It is not a job that you can do if you don't have it in your heart. Check the places out carefully, show up when they don't expect you and get alot of references. I really didn't need to tell you that I know. One last thing, don't let any one make you feel guilty about your choice no matter what it is. You have to do what is right for you. I'll keep you and your family in my prayers.:hug:

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