Anyone taking care of adult disabled child?

[bethben]

I have a 20 year old severely disabled child.  I am looking for some "what is normal" in this type of situation.  I am also having trouble finding anyone in real life with a similar situation (I've checked facebook only and don't have any other leads).  Check in here please.

[Ottakee]

I have 3 special needs adult children that I care for full time.  Not sure exactly what you are looking for.  I have guardianship of all of them.  All are on disability.  They all pay a share of the housling costs/utility bills (a huge thing for getting the maximum SSI amount).  I also have home help services which is paid for through medicaid that pays me (about $9/hr) to cook, clean, bathe, dress, shop, and give meds to them.  That is through our local DHHS adult services department.

[sassenach]

I have a 19yo son with severe CP. Feel free to DM me. 

[bethben]

I’m in Colorado.  I have trouble with physical groups since a lot of them are dealing with autistic children.  Mine is such a different road.  I’m not dealing with behaviors as much—just the physical care drain.

 I’m also realizing I have not processed my grief over his life properly.  Since he turned 20 and his 18 year old brother is starting to make plans for his adult life, the whole “I’ll be a mom to a baby/toddler for the rest of my life” has really hit me hard.

[itsheresomewhere]

38 minutes ago, bethben said:

I’m in Colorado.  I have trouble with physical groups since a lot of them are dealing with autistic children.  Mine is such a different road.  I’m not dealing with behaviors as much—just the physical care drain.

 I’m also realizing I have not processed my grief over his life properly.  Since he turned 20 and his 18 year old brother is starting to make plans for his adult life, the whole “I’ll be a mom to a baby/toddler for the rest of my life” has really hit me hard.

If this helps-  there is a second grief no one really talks about that hits when the child is old enough to be planning their lives. It hits and you realize that this stage starts the grief process again but a bit different from when they were younger.   We have a local radio talk host who is dealing with it now with his oldest.  He has been talking about the process well and why doesn’t anyone really talk about it. 

Edited May 8, 2019 by itsheresomewhere

[Liz CA]

28 minutes ago, itsheresomewhere said:

If this helps-  there is a second grief no one really talks about that hits when the child is old enough to be planning their lives. It hits and you realize that this stage starts the grief process again but a bit different from when they were younger.   We have a local radio talk host who is dealing with it now with his oldest.  He has been talking about the process well and why doesn’t anyone really talk about it. 

 

Yes, this is important to realize. Beth, this is completely normal from what I am hearing (I don't have first rate experience but worked with many parents with adult children with disabilities). When siblings, friends and acquaintances talk about college plans, work paths, dating, etc., the realization that none of these may ever be an option for this son / daughter can be overwhelming. And while you have been dealing with the issues for years now, it's a whole new blow that becomes "real" when his or her contemporaries begin an independent life.

Edited May 8, 2019 by Liz CA

[Ottakee]

Do you have in home help for him?  Often that is covered for at least some of the day.

Have you considered a group home/adult foster care for him?  In our area we have some excellent options along with the OK and not OK options.

Do you have respite?  Day programming?  Those things can help give you a break.  Care giving is tiring, esp. when there is no end in sight.

Hopefully you can get some good local resources.   Is he still in school programming?  In our county they also help with options after schooling is done.

I do get the grief part.  It does come in waves and just when you think you are over it, something else comes along and it hits you again.

 

[bethben]

We’re working on getting him a day program.  There are only two that work for him.  One is too far and spending over two and a half hours in the car driving him back and forth is to much for me.  He is on a waiting list for a closer one.  Ironically, his brother provides respite so I can work out alone or go shopping and we have a person for longer periods of time if we want to get away for a night or go on a long hike.  In home care where I am home is a nightmare for my introverted self. I’ve tried it for three summers and it was not at all relaxing and pretty stressful to me. I need a different setup in my home to make that work.

[bethben]

Also, those with older disabled children—do you have any plans for when the rest of your kids are launched?  I feel like I will be invisible for the rest of my life.  I want to do other things with my life but the coordination of it all is exhausting.  

[bethben]

Another also, do any of you with these kids have close friends?  We moved four years ago and have yet to make good friends in our new location.  I've tried - it's just never reciprocated.

[Ottakee]

Having young adults with special needs is hard.  The paperwork alone is overwhelming.

Could you remind me again of your son's special needs and functioning levels?  In addition to parenting 3 adult children with special needs I work with special needs teens and young adults.  I might have more ideas based on his needs and abilities.

I do have a lot of friends, but most of them fall into the a) we have been friends for 30+ years category or b) friends from the foster/adopt/special needs world who "get" this life and are in it with me.  Are there any local groups through your school system for parents of kids/young adults with special needs?  Our county has a special needs families FB group.

As to the future.  I have one getting married to a young man with special needs.  They will live with his parents for a while and then an apartment nearby with CMH supports and daily check ins.  My other 2 will be here long term.  They are all safe to be alone for several hours at a time, can microwave simple items, etc.  I am putting in another bathroom and kitchenette in the basement for my dd to have her own "apartment".  She will be sorta on her own and have room for a roommate if she wanted but still be close to me for medication management, cooking hot meals, shopping, etc.

I still struggle though with the lack of freedom to just go and do what I want....like head up north and spend the night at a friends and go hiking or take a short trip, etc.

[bethben]

He functions at a 18 month old level.  He’s mostly non verbal but we understand what he needs or wants just because we’re around him constantly.  Like for instance if you leave the tv remote on the kitchen table, he will grab it and give it to you to put back in it’s proper place.  I know the difference between pain grunt, too gassy grunt (he has a g-tube) and constipated, put me on the potty grunt.  He does have about 10 words and phrases that have changed a little through the years.  Lately, he has been calling me mama bear.  I call him baby bear.  He laughs.  It’s our comedy routine.  He gets around pretty well in a wheelchair because everything below his waist is messed up.

[Ottakee]

Thanks for sharing more about him.  He sounds a lot like my young adult SXI students I work with the most.

In our area there is a fantastic adult foster care/group home facility for adults at his level.  They have day programming, live in smaller "family" units....6-8 individual rooms in a group, do tons of outings, etc.  If you lived near here I would suggest looking into something like that.

Many of my students live in group homes and visit their families.  The parents are still heavily involved but not doing all of the day to day care.  That might be an option for you to explore....even for a few years from now.   I know some of the best options have waiting lists.

If you aren't already signed up for home help services, see about that.  It pays you to do his daily care.  It isn't much but it does help.

People are often amazed at how different each of my students are and how they each have their own unique personalities and communication.

Do you want to move to West Michigan?  Our school goes up to 26 years old.  We also have great services for adopted kiddos with special trauma/behavioral needs.

[KungFuPanda]

I have a disabled child who is now 18.  He has duchenne's muscular dystrophy. I completely have my head in the sand about any type of SSI benefits or home health care even though I could probably really use the respite.  It's hard this year because all of the kids his age are launching and he'll never do that.  

[Ali in OR]

I have a 22 year old nonverbal wheelchair kid who graduated out of the school system last year. Medicaid pays for her in-home care and I went back to work at a job I love (Educational Assistant helping out in high school math classes--I taught math before kids). This has worked out really well. I have my own life now and she has had mostly great caregivers about her own age who care for her and get her out into the community. I think she's healthier than when she was in school (gets as much sleep as she wants and has had only one cold this year). I also think that her long-term health is better living at home. I'm not sure an adult foster home would notice health issues as fast as I do since I've known her for 22 years (we've been through a lot together). We hired a local agency that hires the caregivers. There is high turnover in this line of work so I am glad it is someone else's job to get the next person, do the background checks, etc.

Edited May 12, 2019 by Ali in OR

[Ottakee]

55 minutes ago, KungFuPanda said:

I have a disabled child who is now 18.  He has duchenne's muscular dystrophy. I completely have my head in the sand about any type of SSI benefits or home health care even though I could probably really use the respite.  It's hard this year because all of the kids his age are launching and he'll never do that.  

If you want any help with this, send me a message.  At age 18 they can get $771/month if they help pay their share of mortgage, etc.  They also get medicaid.  All of that is a huge help.

[sassenach]

On 5/8/2019 at 10:10 AM, bethben said:

Also, those with older disabled children—do you have any plans for when the rest of your kids are launched?  I feel like I will be invisible for the rest of my life.  I want to do other things with my life but the coordination of it all is exhausting.  

 

I'm in school right now before ds ages out of school. We also have in home care, which allows for that. I'm sorry in home care didn't work for you. I get what you mean about the introvert factor, but at this stage of his care, I've learned how to get the space I need. My plan is to work as a nurse, full or part time. I will graduate right as he's aging out, which will mean figuring out the next stage, but at least I'll be out of school.

On 5/8/2019 at 7:21 PM, bethben said:

He functions at a 18 month old level.  He’s mostly non verbal but we understand what he needs or wants just because we’re around him constantly.  Like for instance if you leave the tv remote on the kitchen table, he will grab it and give it to you to put back in it’s proper place.  I know the difference between pain grunt, too gassy grunt (he has a g-tube) and constipated, put me on the potty grunt.  He does have about 10 words and phrases that have changed a little through the years.  Lately, he has been calling me mama bear.  I call him baby bear.  He laughs.  It’s our comedy routine.  He gets around pretty well in a wheelchair because everything below his waist is messed up.

 

He sounds similar to my son. Mine is a little lower functioning. Probably at a 9 mo old level, completely non-verbal and not mobile. The bolded made me smile.

57 minutes ago, KungFuPanda said:

I have a disabled child who is now 18.  He has duchenne's muscular dystrophy. I completely have my head in the sand about any type of SSI benefits or home health care even though I could probably really use the respite.  It's hard this year because all of the kids his age are launching and he'll never do that.  

 

You should really bite the bullet. SSI is a nightmare to set up, I won't lie. However, money helps. Ds's benefits allowed us to get a lift van (for the first time- I spent his entire 18 years physically loading him up into a car seat) and it's been life altering. For home health, the agency does aaaaallllll the heavy lifting. I hardly did a thing to get that going. 

Last year we got SSI started, and therefore the lift van, we got home health started, we had a ceiling lift system and a ramp installed. 2018 was a year of completely life changing help for us in caring for ds.

[Teaching3bears]

My oldest is almost 18.  I am continuing to homeschool him and my 15-year old with special needs.  They don't have physical disabilities but their problems have become more medical and have increased over the years.  My oldest needs help with changing and toileting and is using a case of diapers or more a week.  Sometimes we need to change his sheets more than once a night.  I find this physical stuff very tiring.  Plus, there is a lot of night waking and staying up all night which doesn't help.  Still, the hardest stuff is emotional: watching them suffer and not be able to participate in life.

I love the homeschooling but it is very unpredictable because of their sleep and moods.  

I have also never found anyone in a similar situation as me at this stage of life and I also feel invisible as I am finding it harder and harder to leave the house at all and feel that they are safe without me.

 

 

[KungFuPanda]

On 5/11/2019 at 10:33 PM, sassenach said:

 

You should really bite the bullet. SSI is a nightmare to set up, I won't lie. However, money helps. Ds's benefits allowed us to get a lift van (for the first time- I spent his entire 18 years physically loading him up into a car seat) and it's been life altering. For home health, the agency does aaaaallllll the heavy lifting. I hardly did a thing to get that going. 

Last year we got SSI started, and therefore the lift van, we got home health started, we had a ceiling lift system and a ramp installed. 2018 was a year of completely life changing help for us in caring for ds.

I know I need to get that ball rolling, but right now getting this kid through high school has me tapped out.  He needs a great deal of support and accommodations.  He uses a power wheelchair and we we have a rear-entry minivan.  The ramp just folds down.  I'm too afraid that something with a motor would die on me and leave me stranded at an inconvenient time.  No available handicapped parking happens often enough that I'm grateful for rear entry.  It does make city parking tricky, but we tend to use the metro in D.C.

For transfers we use a pneumatic hoyer lift.  We have a ridiculously redneck bath solution that involves a stock tank and an aquarium pump.  I need to put a clawfoot tub in his room to spare me some hassle in that area, but he prefers a bath to a shower because it's easier for him to move in water.

[maize]

Can I just say that all of you mamas on this thread are heroes? I've never quite understood why we put people like service members and first responders on a higher pedestal than caregivers in our society.

Edited May 15, 2019 by maize

[gardenmom5]

I have a couple friends who do, I don't think they're on any FB type group for support.  one's son is schizophrenic and unable to live on his own.  they've had trouble even finding effective medication to help him be marginally stable. (our house is one of the few places he'll come. we can leave for an hour, and he's happy to stay here...ok, if you're fine, we'll be back.)  (at least he's not the scary kind.  my bil was the scary kind.... and refused any form of treatment.)

the other has a son with a catastrophic brain injury at birth. he's now institutionalized, but she cared for him at home until he was an adult. (to continue to receive state aid, she had to institutionalize him. his health is starting to greatly deteriorate, but he already lived longer than the majority of kids with that type of brain injury.)

[sassenach]

3 hours ago, gardenmom5 said:

I have a couple friends who do, I don't think they're on any FB type group for support.  one's son is schizophrenic and unable to live on his own.  they've had trouble even finding effective medication to help him be marginally stable. (our house is one of the few places he'll come. we can leave for an hour, and he's happy to stay here...ok, if you're fine, we'll be back.)  (at least he's not the scary kind.  my bil was the scary kind.... and refused any form of treatment.)

the other has a son with a catastrophic brain injury at birth. he's now institutionalized, but she cared for him at home until he was an adult. (to continue to receive state aid, she had to institutionalize him. his health is starting to greatly deteriorate, but he already lived longer than the majority of kids with that type of brain injury.)

 

That's really upsetting. People can say what they will about California, and there is plenty to say, but this state provides monetarily for families to keep their disabled loved ones at home. We've been so well cared for by California. I'll always be grateful.

[Stacia]

Hugs to all the care-giving moms/ parents/ families. I know it is so hard & I can't even understand the full extent of it because it is not my life.

My best friend (since high school) has a 19yo disabled son. His is physical (genetic) disability only, not other forms. I watch them & they are so burned out. It is a hard & unrelenting life &, even so, they deal with it with grace & happiness most of the time.

Some of you have mentioned benefits re: paying toward mortgage, etc. Is there a link or two you could provide that I could give to my friend? I think they are aware of various resources, just haven't followed up on as much as they need because of the sheer overwhelm of daily life. They are also looking for a home care helper (especially for lifting, as their son is tall, he has a rod in his spine so has to be supported a certain way when lifted, etc) -- any advice?

I try to help when possible or to help research info & give them the condensed version, help watch their son for a few hours so they get a break, etc. What else can I do to help? What other resources should I mention to them?

Thanks so much for any guidance. You can PM me if you feel any of this will derail the thread too much.

And, again, hugs. You walk a challenging life. I know it has rewards, but I know there are plenty of really hard times too.

[gardenmom5]

34 minutes ago, sassenach said:

That's really upsetting. People can say what they will about California, and there is plenty to say, but this state provides monetarily for families to keep their disabled loved ones at home. We've been so well cared for by California. I'll always be grateful.

they paid when he was a minor.  his "peers" in the same day program from when they were in California, all died years ago.  they moved, they would have some help if they kept him home - but not enough.  my friend had to have shoulder surgery because of the damage she did to her shoulder lifting him.

actually, it's been awhile since I've really talked with her, so I'm not even sure if he's still alive.  when he was born - the drs didn't think he'd live to adulthood.

[beaners]

6 hours ago, KungFuPanda said:

I know I need to get that ball rolling, but right now getting this kid through high school has me tapped out.  He needs a great deal of support and accommodations.  He uses a power wheelchair and we we have a rear-entry minivan.  The ramp just folds down.  I'm too afraid that something with a motor would die on me and leave me stranded at an inconvenient time.  No available handicapped parking happens often enough that I'm grateful for rear entry.  It does make city parking tricky, but we tend to use the metro in D.C.

For transfers we use a pneumatic hoyer lift.  We have a ridiculously redneck bath solution that involves a stock tank and an aquarium pump.  I need to put a clawfoot tub in his room to spare me some hassle in that area, but he prefers a bath to a shower because it's easier for him to move in water.

 

I would get the ball rolling on the SSI now because it is also easiest to do prior to 21 (maybe 22)? We have done it for 4 kids in the past year. Go into the SS office and say you want to apply. You might even be able to do that part online. They can set up a phone interview to get the names of doctors, then they will contact them for medical records to approve you. Stop back into the SS office after it is done to set up payment arrangements, and you're done.

With Duchenne's you should have plenty of documentation that will get an approval. We had to do a questionnaire for one of my kids with CP and one needed an actual appointment with their doctors to do IQ testing, but for both of them it was because we had no medical records before their adoptions as teenagers. Even if you don't want to sort through what is available right now for services, getting SSI set up as soon as you can helps maintain access to disability benefits later on.

 

 

For the OP, we have a lot of teenage and young adult children with moderate to profound disabilities. We have a few local friends, but we have a lot of deep friendships through online communities. I'm talking friends who drive from several states away to help because we have a planned hospital admission this week, a friend who lives in another country who has come to help us during busy times, things I never would have expected anyone to do! But it is not the same as having someone who can duck out and meet me for coffee on the spur of the moment. It does help to have friends who understand things that happen in your life compared to typical kids, even if those friends are online rather than local. 

[bethben]

9 hours ago, sassenach said:

That's really upsetting. People can say what they will about California, and there is plenty to say, but this state provides monetarily for families to keep their disabled loved ones at home. We've been so well cared for by California. I'll always be grateful.

 

When we were moving from Minnesota, I knew enough about how different states had different waivers to help with children with disabilities.  Most states have no help whatsoever for disabled children and adults.  I called someone in Tennessee for example.  I was told that unless I had a direct/audible call from God to move to Tennessee to not do it.  She then proceeded to tell me how an elderly mother with a disabled adult child was told to abandon her child at a homeless shelter so that she could get help for him.  I've heard other stories like that - basically a lot of parents have to make their child wards of the state in order to get help.  It's horrible that this happens in America honestly.  My sister is moving to Tennessee with her autistic child--it's a done deal for her.  But, she is already in a state that offers no supports so it's not a change for her anyway.

9 hours ago, Stacia said:

 

Some of you have mentioned benefits re: paying toward mortgage, etc. Is there a link or two you could provide that I could give to my friend? I think they are aware of various resources, just haven't followed up on as much as they need because of the sheer overwhelm of daily life. They are also looking for a home care helper (especially for lifting, as their son is tall, he has a rod in his spine so has to be supported a certain way when lifted, etc) -- any advice?

I try to help when possible or to help research info & give them the condensed version, help watch their son for a few hours so they get a break, etc. What else can I do to help? What other resources should I mention to them?

 

 

I can pay down my mortgage and add more money to retirement because of a program available in my state.  I became a Certified Nursing Assistant so that I could be paid to take care of him.  The state is paying someone to take care of kids like my son and they figured that parents should be paid just like anyone else who would have to come in and help.  So, I have a full time job.  Not every state has this - especially when children are under 18.  There are very few states that have anywhere close to this program.  So, to answer your question about how to help parents get a break, you will have to contact the ARC in your state.  But, be aware that the majority of states have no helps for parents who are raising severely disabled kids.  And it really doesn't matter if it's a blue state or red state.  

[unsinkable]

I just want to die at the exact same moment my daughter does because any other alternative makes me ill.

What would she do with me? What would I do with her?

If anyone has a problem with me thinking like this, I don't care.

[bethben]

7 minutes ago, unsinkable said:

I just want to die at the exact same moment my daughter does because any other alternative makes me ill.

What would she do with me? What would I do with her?

If anyone has a problem with me thinking like this, I don't care.

I want my son to die before me because at least I know he's safe with Jesus.  I also feel horrible saying that.  I also know that my life would change dramatically and I'm not sure what I would do with myself since my life is so wrapped up in his.

[Innisfree]

10 minutes ago, unsinkable said:

I just want to die at the exact same moment my daughter does because any other alternative makes me ill.

What would she do with me? What would I do with her?

If anyone has a problem with me thinking like this, I don't care.

Your feelings make perfect sense.

What makes me ill is the lack of good alternatives in our society. Regardless of love and commitment, parents can't always keep up the level of care their kids need. We should be able to provide support that genuinely works.

[Ottakee]

Kung Fu panda...I agree with starting asap as it can take years but there are so many benefits to having g SSI and medicaid...even for getting house modifications, etc.  

 

Just make sure to charge him his share of the housing from when you apply.   He can back pay you when approved but it gives them $250/month more in benefits.

[sassenach]

2 hours ago, bethben said:

 

 

I can pay down my mortgage and add more money to retirement because of a program available in my state.  I became a Certified Nursing Assistant so that I could be paid to take care of him.  The state is paying someone to take care of kids like my son and they figured that parents should be paid just like anyone else who would have to come in and help.  So, I have a full time job.  Not every state has this - especially when children are under 18.  There are very few states that have anywhere close to this program.  So, to answer your question about how to help parents get a break, you will have to contact the ARC in your state.  But, be aware that the majority of states have no helps for parents who are raising severely disabled kids.  And it really doesn't matter if it's a blue state or red state.  

 

California has something like this. It's called In-Home Support Services. Except I did not have to get my CNA.

[beaners]

4 hours ago, sassenach said:

California has something like this. It's called In-Home Support Services. Except I did not have to get my CNA.

 Alabama has Personal Choices if you are on a waiver. I think several states have similar programs so that you can choose who provides your care, with different restrictions in different places. I want to say ours pays for Medicaid nursing hours only? It's on my to-do list to figure out how it works here, because I know we qualify.

[Lecka]

Just FYI about waivers, if they are not “fully funded” then you go on a waiting list, sometimes for years.  

[sassenach]

14 minutes ago, Lecka said:

Just FYI about waivers, if they are not “fully funded” then you go on a waiting list, sometimes for years.  

Yes. Ds spent 4 years on the Florida waitlist, then we moved to CA.