families with a severely disabled child..

[bettyandbob]

This is long...

I mean severe enough that the child probably will not leave home.

 

My youngest child will probably work (fast food, janitorial, or something along those lines), but maybe not full time, probably not enough to be self supporting, even if he had an income some people could live on, he probably couldn't do all the stuff he had to do for independent living. He might achieve basic living skills--prepare meals, laundry, etc, but you need so much more to live on your own. So, ds will probably be with us forever. When we die I don't know what will happen. Before marriage and children one of my many previous jobs was as an advocate. I know all about what's available in community supported housing and wait lists. I know if I even wanted my child to live in a "group home" it wouldn't be possible. Our incredibly wealthy county only does emergency placements (they don't say that really, but that's how it works). So, if a child is placed before a parent dies it is because his family abandoned him. People who reached a breaking point, such as elderly parents who couldn't handle their adult child anymore, have been told to leave the adult child at a homeless shelter.

 

The whole thing what to do when I'm just too old to do this is too abstract right now.

 

The thing that seems to bother me is that my child won't move out for college at 18, won't be gone for good by the time he's 25. My neighbors have 2 sons in college. They just told me about their plans to drive to NY for the weekend and then said "your time will come". I have friends who are excited about being able to visit with their child, but not have to supervise them. Excited about being free to go on dates with their dh. I guess maybe it's jealousy, disappointment that dh and I won't have that phase of our lives. It feels like a jab, whenever someone says something about "just wait until you get to..."

 

I don't know that we'd ever go anywhere. Just being able to be home and not be responsible for someone probably is quite relaxing. My son is still young so this "stage" I refer to would still be a long way off.

 

I also wonder after all these years (7.5) why I still find times where this upsets me. Do you get used it. I feel guilty. I love my son. So, if I love my son why would a state of non normalcy still upset me?

[Mom2boys]

First of all, :grouphug:.

 

Secondly, I haven't walked in your shoes, so I don't have any "been there, done that" advice. But I was wondering, when your older children are adults, if they would be able to provide respite care for your youngest, so that you could have breaks from caring for him? If they could each watch him for two weeks, then you would have four weeks to travel, or have date nights, or do whatever you wanted.

[Veritaserum]

:grouphug: I have a severely disabled younger brother. It has been very hard for my parents over the years. Does your state offer any respite programs? My parents got a certain number of hours per month where a care worker would come into our home to give my mom a break. That was in California.

 

My brother is now 25 and his health problems have become more severe so he lives in a group home with a 24-hour nursing staff. I think Medicaid is covering a portion of that. My parents may also be paying a monthly fee. He seems happy there and my parents bring him home during the day on the weekends.

 

My parents have me has their life insurance beneficiary and I will get guardianship of him if they die before he does. His condition is rare enough that they don't know how long he'll live. When he was born the doctors guessed no longer than 3 months.

 

I'm sorry you're having a hard time. I'm sure it's very overwhelming to have the equivalent of a toddler/preschooler forever. I hope you're able to find some solutions so that you get a break sometimes.

[Jean in Newcastle]

My nephew is 35 and lives at home (because of his disabilities, not because he just won't leave)! My brother and SIL just took their first 2 week trip without him. They were able to do it because their younger two children are now responsible adults who love their brother very much.

 

The two siblings agreed wholeheartedly to stay with their brother while my brother and wife traveled. Both adult siblings moved back home for the 2 week period. Then they divied up their work schedules so that one of them would always be there during the day. They could both be gone for short times (up to one hour with cell phone contact) but they tried not to have that happen. They had a list of his medications and followed the dosage list meticulously. My disabled nephew is a transplant recipient and so his medications are very important.

 

When my brother and SIL are home during everyday life they have a close neighbor who act like grandparents to my nephew. If my SIL has to go to the store and it will take longer than an hour (and my brother isn't there) - these neighbors pop over and spend some time with my nephew.

 

My brother and SIL have talked to their eldest son and he has agreed to be my nephew's guardian and to take him in if they die before my nephew. There of course is always that possibility but there is also a very strong possibility that my nephew will die first because he's already reached the life expectancy of many people with his particular disabilities. He almost died a few years ago but they were able to have a heart transplant.

[JFSinIL]

I am in the same shoes as you - my son is 17 now and while his fraternal twin is looking at colleges Joe will NEVER live independently (and in Illinois there is virtually NO place for him to live other than home. Probably no place to work or spend his days, either once out of school). I am hoping that one of his siblings will take him once in a while so we can travel (if we can afford it)someday. Meanwhile, i can not see getting a job since I will need to be home with him.

[chiguirre]

Hi Betty,

 

My oldest will either live in a group home or a state school depending on his aggression level as he gets bigger. The wait in TX is about 10 years to get into a group home so he will be able to live away from us by his mid-20s. In fact, all my kids may end up moving out at about the same time (:D or :crying: or maybe both). If your state has really poor supports for disabled adults, could you consider moving to a friendlier state when you retire?

 

I do think my oldest will be able to stay home alone for a couple of hours as he gets older. He's already fairly self-sufficient in taking care of his personal needs and he's very compliant with my safety rules. If your ds can eventually work pt, he'll probably also be able to stay by himself for a couple of hours while you do errands or go on a date night. It's not exactly an empty nest, but it's a lot better than having to take the troops everywhere.

 

I think it's pretty typical to go through periods of feeling down about your sn child's future. It's a worry and not something you can completely plan for because of all the variables. It's not a question of loving your ds or not, it's a question of feeling so unable to plan for the future. Well, that and the daily grind of parenting a very large preschooler.

[Susan A.]

My cousin's wife has a brother who has Down's syndrome. He is 52 and her parents are in poor health. I'm not exactly sure of all the details of this, but a few years ago they rented him an apartment and get sitters to be with him (around the clock) when he is not at his day program. She and her siblings live fairly close, so they can check on him frequently and take him for short periods of time as well. He gets some kind of disability benefits that help pay for this.

Another cousin has a severly disabled daughter who cannot be left alone for any length of time. She and her husband manage to take several trips each year with the help of local college students (they are paid), friends, family and neighbors who pitch in and watch her when she is not at school. This cousin has two younger children who will be able to help as well when they get older. They also use the college students in the evenings to help out so that they can maintain a fairly normal life for their family. The college students love doing this and gain valuable experience for their future careers in nursing, teaching, psychology, etc. and they can work for less money than a professional sitter.

[FlockOfSillies]

Some dear friends of ours have a mentally disabled dd. She's probably nearly 30 yrs old by now. Last year they finally found a group home for her out of state.

 

We also know another family with a severely disabled son. He's in his late teens/early 20's and has the mental capacity of a small child. Obviously he's not able to care for himself. The parents found a group home for him as well.

 

It was a gut-wrenching choice for both families, but so far it seems to have been the best one. And these were done after years and years of sacrifice on the part of the parents.

[Mommyof4ks]

First of all, :grouphug:.

 

Secondly, I haven't walked in your shoes, so I don't have any "been there, done that" advice. But I was wondering, when your older children are adults, if they would be able to provide respite care for your youngest, so that you could have breaks from caring for him? If they could each watch him for two weeks, then you would have four weeks to travel, or have date nights, or do whatever you wanted.

 

:iagree: First, don't feel guilty, we all grieve the 'what could have been life' at some point. I have not been in your shoes and my son will hopefully not have life long issues, but even with cancer we grieved and at times still do all of the things that will never be or that we have had to miss due to his illness (he is alive things are just different). It certainly does not mean you love him any less, and it shows that you have accepted the reality of the situation even if it is hard. You are doing a great job!

 

Second, respite with family or perhaps friends for time away will be necessary in order for you to continue life long care. Your ins. may even provide for respite care for him or perhaps you could pay someone to come stay with him while you go away. My grandmother used to do this for several families who had children that had to live at home for medical reasons (she was a nurse most of her 'working' life).

 

:grouphug::grouphug::grouphug:

[Colleen in NS]

The thing that seems to bother me is that my child won't move out for college at 18, won't be gone for good by the time he's 25. My neighbors have 2 sons in college. They just told me about their plans to drive to NY for the weekend and then said "your time will come". I have friends who are excited about being able to visit with their child, but not have to supervise them. Excited about being free to go on dates with their dh. I guess maybe it's jealousy, disappointment that dh and I won't have that phase of our lives. It feels like a jab, whenever someone says something about "just wait until you get to..."

 

I don't know that we'd ever go anywhere. Just being able to be home and not be responsible for someone probably is quite relaxing. My son is still young so this "stage" I refer to would still be a long way off.

 

I also wonder after all these years (7.5) why I still find times where this upsets me. Do you get used it. I feel guilty. I love my son. So, if I love my son why would a state of non normalcy still upset me?

 

:grouphug: I have friends with a 16yo autistic boy and they said he will always have to live with them, too. They MIGHT be able to buy a house for him next to their own, but somehow it would have to be a situation with a lot of supervision and help. I do know that through these years of raising him, they have deliberately built up a support network of friends and family around them, and they do have some freedom - one or the other of the parents is always traveling somewhere (they are missionaries). And I suspect they do get out on dates sometimes.

 

On a much smaller scale, I can relate to the difficulties. My kids have severe food allergies and it felt VERY restricting the first few years - if we ever found a restaurant that we felt could be safe to eat in, we still had to give the wait staff the 3rd degree about their food preparations, etc.. It came to the point where it just wasn't worth it anymore to try to go out to eat (we still do a couple of times a year) anymore. It seemed like we were becoming "abnormal." But you know what, not going out to eat became our "new normal." And it's fine now, we've adapted. That word, "create," that I wrote in the subject line, is an action verb. It implies that you have a choice and can do SOMEthing. I had a choice - lament the loss of regular restaurant meals, or learn to cook at home and have our family fun in other ways not related to food.

 

The thing that was even harder was the isolation that came with people being afraid to invite us over for meals. I realized that if we wanted to have fellowship with people, we had to take the bull by the horns and be the inviters most of the time.

 

Of course there is guilt - you love your child, but you are mourning a loss of something. I guess all I'm saying is that I figured out that if I get creative, I can make a new normal and be happy with it. Let yourself mourn at the various times you need to, then put on your thinking cap on how to change the things you can.

 

ETA: I just read more posts after mine. If you get any tidbits from mine, great, if not, great. My situation pales in comparison to what the rest of you are dealing with.

Edited January 23, 2009 by Colleen in NS

[sassenach]

The grief comes in waves, doesn't it? Shortly followed by The Guilt. Not your normal guilt, but capital G guilt.

 

My ds will never live on his own. He is at about a 3 month old level, and all signs point to him always being at this level. This is such a big subject, I need to break it down into separate thoughts.

 

Grief. I don't think I'll ever be done grieving ds. I do feel like I have hit a time period where it has lessoned. When he was young, I watched as other kids his age developed, while he stayed behind. God put us in a small group with another family who had 3 delightful sons. Their youngest was just 3 days younger than ds. That was a period of grief and healing for both dh and I. We watched their son climb on countertops, run around and just be a boy. We came to love him, and somehow that allowed us to let go of the sadness. Still, everytime ds's bday rolled around, I would get blue. It was such a scary day in our lives, it was hard to not feel the pain. In the last 2 years, the pain of that day has lifted somewhat. We always do something fun as a family on his bday, and slowly, the day is becoming something that our whole family looks forward to. For me, there is the grief of the loss of a healthy child, and then there is anticipatory grief. Knowing that one day, he will leave us. His disability is severe enough, that he has well outlived what we were told and I know that his life span will probably be much shorter than average. Frankly, I hope to outlive him. I greatly fear not being the one who takes care of him. Because he does not communicate, I have to deeply trust anyone who cares for him.

 

Having a life. Dh and I have come to depend on our church family. We did not go out on a date till ds was nearly 2 years old. Dh actually flew my mom in for that. Over the years, I have come to trust and accept help from some special people that God has placed in our lives. Dh and I have even taken overnight trips : ) We lived across the country from any family until last year. That taught us to make an effort to train those people who wanted to help us with the kids. As for the future, you're right, it's almost too big to think of. I honestly have no plan. I do not see a group home in our future, but I know that I can never say never.

 

It's ok to grieve over this. Jeez, if we grieved every facet of life with a disabled child all at once, it would be overwhelming. Instead, just take it piece by piece. ((((HUGS))))

[mariposa]

I have a brother who is severely disabled and he is living with my parents, so I can understand a little bit of what you are feeling. My dh and I have committed to take care of him when my parents are no longer able to.

I think that the main thing for me is just to take one day at a time. It IS overwhelming to think about the future. And it's hard to think about the future.

Most of the time, I try to focus on what our family has GAINED from having my brother in our lives. Thinking about what we can't do quickly leads to depression or being overwhelmed. Instead, I try to see how strong our family is, what a cooperative spirit we ahve as we care for my brother together, and how much I have grown personally while facing the challenges involved in being part of his caregiving team. I have seen so much to admire in my parents and how they have handled every step.

And every once in a while, I even ask myself what "normal" really means anyway. As homeschoolers, we probably know better than most how much joy can come out of making alternative choices about how we live our lives. On good days, I can see that joy in the life we have that (because of my brother) is so different than most people's "normal" daily life....

Sarah

[Ottakee]

I have 2 that will be in this situation.

 

My oldest is now 21 and likes living at home. He is in a public school program for young adults with job training, etc. He loves it. We are in Michigan so we actually have a lot of supports available. he will likely move out when he is about 25 or so--when he is ready. It will be to a group home or supportive situation.

 

In our state there is quite a bit of money for home help so I have a friend that actually lived in a home with a disabled young man. The young man could be left alone during the day and a bit at night but needed help with money, cooking, laundry, etc. so that is what Dan did for him.

 

Honestly, I could see my 21ds living with his 18 year old bio brother in a few years. They get along great and Joe could provide some supervision but at 18 he needs a few more years to mature. (we adopted our son when he was 7 1/2 and Joe was 4 1/2 and adopted by a family about 45 minutes away)

 

My next one is only 13 so it will be awhile before she is ready for anything.

 

I would certainly look into respite services NOW. It has been a huge blessing for us.

[Ali in OR]

Just want to say we're in the same boat. Shannon's situation sounded a bit like ours--our dd is more like a baby and needs a lot of care and always will. This is normal life for us and usually it doesn't get us down too much. We'll be training her little sisters how to care for her and expect they'll be able to help us out some if we need a break. We enjoy doing activities with all of our kids. We don't really have 1-on-1 dates much, but there are still many things we enjoy doing as a family. Life is good, even with a disabled child. Our dd is not behaviorally disruptive (most of the time!) and loves to get out and do stuff. We also recognize and appreciate the few perks of her disability--usually great parking places, free pass to all national parks, she gets into movies free. Sure we'd rather she could walk and talk, but life isn't miserable. Respite care also exists and there are many people out there who love to help out with special needs kids. Hope they also like special needs adults!

[ajjkt]

It's easy to say but...you really shouldn't feel guilty for mourning over 'what might have been'. When I was 12 my amazingly wonderful, intelligent, vibrant father had a massive heart attack and has severe brain damage as a result. It has been part of my life since '94. I don't think I'll ever 'get over it' but I can deal with it most of the time.

 

Most of the time I deal with it and accept it as being part of my life. Sometimes I get really down about it, particularly with big exciting changes. I wanted my dad to know that he was a grandfather. Actually, when I got married I wanted my dad to remember that he had a daughter. My graduation ceremony from uni was something that he wouldn't be able to attend, so I chose to graduate in absentia. There are certain other things that trigger my grief, but most of the time it doesn't bother me to much.

 

I know you asked about a child. I think I would find it harder to deal with if it was one of my children rather than a parent. :grouphug:

[Mere2]

My DS is 4yr old and has a rare muscle disease - future unknown at this point. I'm still wrapping my head around it all; occassionally I think about the future, the need for a house etc with electric wheelchair access etc. However it generally is to overwhelming for me to think about the unknown/ future.

 

What I do know is that I give myself permission to feel anything that I want to feel - guilt, sadness, pity, rage and of course the joy that one has with their special needs children that no-one else can share. The emotions are cyclic and I guess that they will always come and go, no matter how far down the path on your journey that you are.

 

I was having a conversation with my mother - I was saying that I dont like having a special needs son and I dont want to be a mother with a special needs son. My mother was horrified at me and what I felt. (She always thought that I had taken the whole "thing" with such grace.) I politely pointed out to her that no mother would raise their hand and request that their child have special needs and it was OK for a mother to dislike having to fulfil that special role and it has nothing to do with how much we love our children and how we will always do our best by our special needs children.

 

I'm not very good at putting things into words, but I am trying to say that its OK to be upset/ jealous etc about not having that special time in your life that your friends have or anything else that comes and goes with the territory. Every day brings an entirely new emotion about what life is like with a special needs child/adult. Unfortunately every person journey is entirely different, so we cant even "cheat" and know what to do/expect/feel for the future (and today!!).

 

So enjoy those joyous highs and battle through those lows....all over the world there are mums like us who understand (as this post as indeed shown.)

:grouphug:

Fi