Custody of Special Needs Brother?

[JudoMinja]

This is something I just need to get my mind thinking over and that works best for me when I write/type, but I wanted to do that in here in case anyone with experience in such things might have some good advice for me.

I have a brother who is five years younger than me and has autism. Currently he is still in school. He is eighteen years old and a Sophmore in High School, so he has two more years left, unless they decide to keep him in school longer as he is allowed to be held back until he is 21 I believe, if they think he needs it. Even if he is held back, I do not think this will come up until he is out of school. My mother asked me last night if I would fast and pray over letting Jacob (my brother) live with me when they die. If I give them the go-ahead, they will be putting this in their will so that I will have custody of Jacob when Mom and Dad die.

Both my parents are in their 40's- Dad late 40's, Mom early, so I really don't think this will be coming up in the near future, but it's still a very important decision. I cannot just say "Yeah, okay" and then not think about it, because at some point this is going to happen and I need to be prepared for it.

Right now, I am a single-mother with a two-year-old. That means my son, Tyler, would have to be prepared to live with Jacob when that time came, as well. Unless this happens so far down the road that Tyler is already grown-up and moved out before my parents die. It also means this is an important point to bring up to any potential future-spouse. Any guy I marry will have to be prepared and capable of living with and getting along with Jacob.

If I do not say I am okay with doing this, Jacob will likely be put in a home when my parents die. I have three other siblings, but I highly doubt any of them would be willing to take care of Jacob. The oldest- Jon- has two kids of his own, is divorced, and can hardly take care of his own kids. He has a narcisstic personality, and really I don't think it would be best for Jacob to live with him. Then there is my younger sister who is married with one child and another on the way. She may be willing to take Jacob in if there was no other option, but they always clashed at home and she had a very hard time understanding him. Then there is David who is younger than Jacob, and who knows what he will be willing to do to help out. He's still in middle-school and figuring out his life as he is just now hitting puberty.

Jacob actually told Mom that he wanted to live with me when they die, and that is why Mom brought this question up. I hadn't really thought about it before, but this is certainly something that needs to be stipulated in a will so Jacob is not turned over to the state while everything gets figured out.

Jacob and I seem to have a mutual understanding and get along with each other very well. It was not always easy for me to understand him, but about the time I turned twelve it was like a lightbulb went on in my head and I realized he was different. From that point on, I worked on trying to see things from his perspective and understand how he interpreted things. Now, I can tell what things are easy for him to understand and what is difficult, and I also know how to get his attention and explain things that may be difficult for him to grasp. Most importantly, I can tell when something is frustrating him and help him talk it out.

As he's reached physical adult-hood though, he's become more stubborn, independant and a little difficult to reason with when he doesn't agree with you. It might be difficult to get him to adjust to family rules when he lives with me, as Mom and Dad don't really try anymore. They just let him do what he wants, as he typically spends his time in his room or out on his bike. He tends to be obsessive about keeping everything in its place, where it belongs, so if Tyler is still a kid this could cause problems. Plus, if I have more kids at that point, I already know that Jacob has a very hard time with little kids. He tries to handle discipline far too harshly, so he and little kids just do not get along.

Getting everyone to adjust to living together would be doable though. The real question is what goes into care financially? Jacob is a smart adult and can mostly care for himself, but he just does not understand numbers or money at all. It is very unlikely that he will be getting a driver's liscence, but he could get a job somewhere. So I would need to be able to drive him to and from whereever he ends up working and manage his finances. He has to see a doctor fairly regularly for checkups as he has fused vertebrae in his neck (and goes to the eye doctor for glasses), so I would need to be able to afford his medical expenses.

What if I can't afford to help take care of him when my parents die? What if some terrible twist of fate has my parents die in the next couple years- there's no way I'd be prepared to care for Jacob financially then, and he'd probably still be in school so I'd have to handle his homework and ARD meetings and everything else.

I'm certainly willing to let him live with me. The question really is will the rest of my family be willing? (A question there is no way to answer now, as that family is another future unknown.) And will I be financially and physically capable of letting him live with me? Just how much goes into the care of an adult with special needs? How much can I just let him do his own thing, and how much will I need to be physically involved? Another question that is very difficult to answer at this point.

[NeuroTypical]

Well God bless you, JM. I know you're a mom, but you're still very young to be dealing with stuff like this. You have very relevant and valid concerns. Money and time and lifestyle and 'is this even possible if I can't control him' and 'what about the rest of the family' - all relevant questions.

Financially - is there any sort of trust fund? Will your parent's life insurance help out? Is there social security disability involved? In this will of theirs, will you be getting funds from your parents estate to help with the costs?

Lifestyle - Ever planning on getting married again? Will a potential spouse accept this responsibility with you?

Your brother - if he has impulse control issues, would he harm you or your kids? Will he ever be able to live on his own, even in some sort of assisted living arangement?

There are many questions. We don't have the answers - you are the only one that can get these answers. If you find answers you can choose to live with, then go for it. "Not until I'm remarried and out of school" may be a good answer. "As soon as my kids are out of the house" may be the answer. "There is no way I could financially support this" may be the answer. "Let's look into assisted-living stuff that medicare pays for, and I'll help him with his bills and drive him places" could be the answer.

Prayer and fasting - your parents recommended well. If the Lord has something to say about it, do what He says.

[slamjet]

Being the father of a child with Asperger, I can understand your issues and very much validate your concerns. And there's not much I can think of to add from what Loudmouth posted.

Having a person with Autism in the house is just like holding on for dear life on a roller coaster. There is so much about this that is out of anyone's control. They're in a world all their own and we're guests in it. And as you may very well know, they live for predictable routines.

About the only thing I can add is it's really good that you're family is having this discussion. Planning for his future for the inevitable is a very, very wise move. But it does seem a bit odd to burden a single mom with this. In our home, everyone needs to pitch in and help our daughter. It seems that, and please don't take offense to this, a more complete family situation would be a better fit.

[MorningStar]

That would be a big worry. Whatever you decide, Heavenly Father will help you with any challenges you face. I have a nephew with Autism. We don't know how self-sufficient he will be when he grows up, but I know he will at least need a lot of support.

Have you expressed your worries to your parents? Do they have a financial plan in place for him?

[rameumptom]

Caring for an autistic child or adult can be difficult and tiring. I would suggest you talk with your siblings about the situation, as he is their brother, as well. Perhaps an agreement that he would stay one month in each home, or stay in one home, with the strong support (financial and physical) of the others. If nothing else, they could each guarantee to watch him once a week or twice per month, giving you a needed break frequently.

If your siblings are willing to help you in such ways, then it may be fine for you to tell your parents that you would take him.

[Gwen]

i'm not sure i could give advise on what is right for your family on where he should live but i think finances should be the easiest to sort out. there are state programs (currently, who knows if/when it actually happens) that help with disabilities like that. might also consider talking to your parents about what kind of life insurance policy they have, ask that it be left to whoever is to care for him to help with finances. if they are in good health they may be able to up the one they have (or get one) without to much issue if needs be.

i remember talking to a couple of my family members about who we could leave our kids to if something happened to both hubby and i at the same time. it's a scary thing to think about full of "what if's". it's not an easy conversation but it's important to have them.

[JudoMinja]

Financially - is there any sort of trust fund? Will your parent's life insurance help out? Is there social security disability involved? In this will of theirs, will you be getting funds from your parents estate to help with the costs?

While my parents have done relatively well financially, they do not have any sort of trust fund. They do have a life insurance policy, but I'm not sure what the details stipulate. And they do not really have any form of "estate" that I could get funds from. They did not buy a house until my father retired from the military as it would be silly to get a house while they were moving around all the time- and they still have quite some time before they'll be finished paying off the mortgage. I believe Jacob would be able to receive social security if he wasn't able to work, but he is capable of having a job as long as those he is working with understand his limitations.

Your questions helped me get a better picture in my head of where other finances may come from, and I will be asking my parents about their life insurance and other funds for Jacob next time I talk to them.

Lifestyle - Ever planning on getting married again? Will a potential spouse accept this responsibility with you?

That is an enourmous unknown that kind of worries me. I certainly want to be married down the road, but I'm starting to feel like it's going to be really really difficult to find a guy even willing to take on everything he would need to in a relationship with me. It's like I need a great big WANTED sign "Exceptional man- Strong in the gospel. Worthy Priesthood holder. Willing to be the father of my son from a previous marriage, and may need to deal with the "crazy" ex. AND willing to live with an autistic brother-in-law whom I will be taking custody of when the in-laws die."

I'll certainly be asking a lot of a potential spouse.

Your brother - if he has impulse control issues, would he harm you or your kids? Will he ever be able to live on his own, even in some sort of assisted living arangement?

No impulse control issues to deal with, so that's not a problem. He would never harm anyone, he just tends to be overly strict. AKA Not letting kids play with toys because then the toys are not where they "belong".

As far as an assisted-living arrangement, that may be possible. He can certainly maintain a job and take care of his basic needs. He would just need someone to manage his finances, drive him to and from wherever he needs to go, and check in on him daily to make sure he's doing okay. However, it would probably be easier if he was living with someone, because he would likely let laundry and dishes fall to the wayside, and may not shower or shave without someone to remind him to do so.

Prayer and fasting - your parents recommended well. If the Lord has something to say about it, do what He says.

I will definitely be praying and fasting about this. I don't want to just say "yes" because I like Jacob and want to help him out. Though I doubt I would say "no", I know how important it is to think this through thoroughly to make sure it really is the best situation for him and make sure the Lord does not think I need to say "no".

[JudoMinja]

About the only thing I can add is it's really good that you're family is having this discussion. Planning for his future for the inevitable is a very, very wise move. But it does seem a bit odd to burden a single mom with this. In our home, everyone needs to pitch in and help our daughter. It seems that, and please don't take offense to this, a more complete family situation would be a better fit.

I certainly agree that a more complete family situation would be ideal. Yet, the only such situation is my sister's household, and that really isn't the best fit for Jacob. Since she and Jacob don't really get along or understand one another, asking her to be the one to take him in would put a lot of tension and strain on both sides- Jacob and her family.

Asking everyone to pitch in together won't really result in much. I'm sure my sister would probably be willing to help out financially, if she is able. Jon, however, is only going to look out for number one. And David- no idea yet. He's still got his own future to figure out.

The fact that Jacob and I have a good connection seems to be what holds this idea together the best and is the reason my mother asked. If I'm prepared for this now, that means I can include conversations about this and spending time with Jacob when considering a potential spouse. That way, whomever I choose to marry is already prepared and hopefully willing and able to help with Jacob.

Perhaps my own family situation will be "complete" when the time comes that I would be taking custody of Jacob. Perhaps not. I cannot know for sure until such events transpire, but making sure Jacob is staying with someone he trusts and can communicate with seems to be more important.

It would definitely be nice if the whole family would pitch in and help. If I talk with my parents about it and we ask, we may be surprised, but I just don't know. Thank you for your feedback. It gave me some more ideas to mull over as I bring this matter up in prayer and talking with my parents.

[JudoMinja]

Have you expressed your worries to your parents? Do they have a financial plan in place for him?

Not yet. My mother just brought this up last night, and I told her I was definitely willing, but would need to think about it and she agreed, stressing the need to pray and fast over it. I posted this today as an attempt to get my thoughts on the matter together and figure out just what to bring up to both my parents and the Lord as I try to figure this out.

With all the information I currently have, it looks as though having him stay with me is the best option available. The most difficult part about that option may be finances, especially if my parents die before I finish school. Helping Jacob and the rest of my family get used to each other won't be too difficult if they are prepared for it ahead of time, and if I know that this is what I'm going to do it's up to me to make sure that my future family is prepared to deal with it.

There is no financial plan in place that I know about, as my parents are also not the most well-off financially. This is definitely an important area to discuss.

[JudoMinja]

Caring for an autistic child or adult can be difficult and tiring. I would suggest you talk with your siblings about the situation, as he is their brother, as well. Perhaps an agreement that he would stay one month in each home, or stay in one home, with the strong support (financial and physical) of the others. If nothing else, they could each guarantee to watch him once a week or twice per month, giving you a needed break frequently.

If your siblings are willing to help you in such ways, then it may be fine for you to tell your parents that you would take him.

I will talk with my siblings. Though I have my doubts, they may surprise me. However, having him go from place to place may not be the best for him. Requiring him to go through too much change would be extremely stressful for him, and it would be even more difficult for him to become accustomed to differing house rules and family styles than it would be for him to adjust to just one person.

He prefers me over his other siblings, so it really makes the most sense for me to be his main provider once that time comes. But the others may be willing to pitch in where they can. We do not live close together, so really the only help they could offer would be financial. Since that is one of my biggest concerns, if they are willing to help it could be alleviated.

[JudoMinja]

i'm not sure i could give advise on what is right for your family on where he should live but i think finances should be the easiest to sort out. there are state programs (currently, who knows if/when it actually happens) that help with disabilities like that. might also consider talking to your parents about what kind of life insurance policy they have, ask that it be left to whoever is to care for him to help with finances. if they are in good health they may be able to up the one they have (or get one) without to much issue if needs be.

i remember talking to a couple of my family members about who we could leave our kids to if something happened to both hubby and i at the same time. it's a scary thing to think about full of "what if's". it's not an easy conversation but it's important to have them.

All the "what if's" is definitely the scariest part about the whole thing. Who would take care of Jacob when my parents die was a thought that just never really crossed my mind until Mom brought it up last night. If it is put in their will that I am to be given custody, who knows when that time may come? As they are both in their 40's, it could be another 40 years down the road. Then again, it could be a whole lot sooner. My father has digestive problems and my mother has heart problems, so who knows?

As far as state programs, I know social security can be collected by those with disabilities, but I thought it was only if they are not capable of working. Not sure. I will have to do more research on it.

[applepansy]

That is an enourmous unknown that kind of worries me. I certainly want to be married down the road, but I'm starting to feel like it's going to be really really difficult to find a guy even willing to take on everything he would need to in a relationship with me. It's like I need a great big WANTED sign "Exceptional man- Strong in the gospel. Worthy Priesthood holder. Willing to be the father of my son from a previous marriage, and may need to deal with the "crazy" ex. AND willing to live with an autistic brother-in-law whom I will be taking custody of when the in-laws die."

I'll certainly be asking a lot of a potential spouse.

We all ask a lot of a potential spouse, even when we're young, with no previous marriages or children, etc. etc. The difference is that you know what the potential spouse will be facing whereas two people without all the baggage don't know what life is going to throw at them. Do not sell yourself or a potential spouse short just because you have a lot on your plate.

Anyone who understands that life has challenges will also understand what a catch you would be, because of what you've already dealt with.

Best Wishes

[Guest]

I'm Filipino... that's a pretty normal thing to do for Filipinos to take responsibility for their siblings - autism or not.

For example, ever since I was born, it's been a known expectation that my sister (she's the youngest) will take care of my parents when they get older. Nursing home or long-term-care facility is out of the question. She gets to inherit the house if she wants it. So, when she went to college, she decided to go to nursing school so she can better care for my parents. Then when she got married she made it known to her future husband that he's going to have to deal with my parents. Her husband is Filipino too so he was fine with it. He has a brother who is a paraplegic. He is taking care of him too - financially for now because his brother is still living with his parents, but when the time comes he is going to have to be my brother-in-law's responsibility. My sister is ok with that. It's really no big deal for Filipinos to do this kind of thing.

My brother went to medical school. Super expensive stuff. So, I helped my parents pay for his schooling so we don't have to take out student loans. I also give an allowance to my mother for her personal expenses so that she won't have to rely too much on my dad. She's a stay-at-home mother all the way up until she turned 65 when, out of defiance, she took a job at K-mart! Anyway, before I got married, I made it clear to my husband-to-be that those things are non-negotiable. He will have to accept that I give money to my family and that my parents would sometimes come to visit us and stay for a year... My husband is American. He's not used to that kind of culture. But now, he loves it. He likes the feeling that if something happens to anybody in the family, everybody else pitches in. And when something big happens, everybody celebrates with him.

What I'm trying to say is - I have experienced both cultures - American and Filipino. And I have to say, I like the way Filipinos deal with family stuff much better. If your brother was Filipino, you would have to fight other people for the honor of taking care of your brother. Because, it is an honor to have that special spirit grace your life for eternity. When the time comes that you choose a husband, that special spirit will touch him too. When your kids come along, they will have that special spirit touch them as well.

With kids especially - that's even better. My children had a babysitter when they were really young and they can't go to the movies with us yet. She has a son who had cerebral palsy - really extreme case. He is almost like Terry Shaivo. He has been like that since he was a few days old. He was in his 20's when my kids started staying at their house for hours on end. Sometimes, he would scream like crazy for no reason. Sometimes his heart would stop and everybody would have to go on emergency mode with paramedics and all that being called, etc. etc. My kids learned a lot from those experiences. They love that guy! They sure learned that everybody is different and that they have to deal with all those differences. Oh, and they learned really quick that they are not the center of the universe...

So, yeah, financial matters is not too big of a worry in the United States. There are tons of State and Federal programs plus some charitable institutions you can tap.

It is a great responsibility for sure. But, what I learned with families is that - the greatest life lessons are found in the greatest of life responsibilities. And it gives the greatest rewards as well. Hopefully, you will find a spouse that shares the same principles.... uhm, I have lots of Filipino cousins if you're looking...

[classylady]

I agree with Applepansy, don't sell yourself short or a potential spouse. I have a cousin, when she divorced, she had custody of her children plus an older sister with down syndrome. She met a wonderful man and they've been happily married now for 9 years now. Together they've met the challenges life brings.

If you meet a man who isn't willing to deal with the challenges you face, he isn't someone I'd want to marry anyway--just sayin'. Bless you for being willing to care for your brother.

[JudoMinja]

Hopefully, you will find a spouse that shares the same principles.... uhm, I have lots of Filipino cousins if you're looking...

Lol. Playing match-maker are we?

Thanks. I certainly wouldn't mind being married to someone who bears family burdens together.

Funny thing is, there's an older guy in my ward who just got married to a Filipino woman he met on an LDS dating site. I felt so great for him. He was my seminary teacher for two years and has such a good, spiritual personality. Now that I know a little background on Filipino family culture, I feel even better for him. He will be well-taken care of.

[lizzy16]

My friends brother has autism and I know they receive money from the government also the same friends mother is on dialysis and holds a job but shes very ill. They receive money from this too.

A while back my friend was interested in getting a job but it turned out if she was working they'd loose the financial assistance (Which was more then she was earning.)

There's deff. programs out there. If you want I could ask my friend and her mom to tell me more about them. Just PM me :)

[slamjet]

Lol. Playing match-maker are we?

Thanks. I certainly wouldn't mind being married to someone who bears family burdens together.

I wouldn't trust a woman who has a large snake as part of her year supply

[skippy740]

Some financial advice here:

1) There must be life insurance on both parents enough to help provide for the lifetime care of the special needs child (ok, so he's 18 already).

2) The 18-year old child must NOT have more than $2,000 in his own name so that he can retain his eligibility for government support programs.

3) There should be a Special needs trust for the proceeds of the life insurance policy - so that these funds are used for his care AS WELL AS retain his eligibility for government support programs.

Of course, speak to a COMPETENT life insurance agent in your state (preferable a CLU designee holder) and an estate planning attorney who specializes in special needs planning.

CLU - Highest Standard of Knowledge and Trust

I happen to know that there are quality agents who work in this kind of program here:

Living with Autism Study | MassMutual & Easter Seals Team Up