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Old 12-19-2016, 02:09 PM
 
Location: Washington state
450 posts, read 373,780 times
Reputation: 637

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I am just looking for some tips or general advice because I don't have a lot of details right now. We just learned our youngest child, a preschooler, may be high functioning autism spectrum or what they used to call Aspberger's syndrome.

I began to read stories about elderly parents who were caring for disabled adult children with the parents into their 80s and the kids being in their 60s some of the cases with severely disabled children. I don't know if that will be us, hopefully not, but I don't know.

Well there goes any dreams of early retirement for us. I don't know where to start doing this type of specific retirement planning, just got a referral to a financial planner so we'll do that soon but want to ask real life retirees for your opinions and experiences.

some ideas jumping around my head
- we need to keep the life insurance policy on DH, it's expensive because he's insured for a good sum, and I was about to look at switching to a cheaper policy until this happened.
- I need to keep working even though it's hard with special needs child, if DH dies of a stroke or heart attack in his 50s and he very well could being obese male in stressful job, then we need the health insurance
- be prepared to have child live with us well into adulthood. Fortunately our home is large enough this is not a problem

any ideas, comments, opinions or know of other retirees in similar situations?
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Old 12-19-2016, 02:24 PM
 
Location: Tennessee
23,587 posts, read 17,574,904 times
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How old are you? Is this child with your husband who is in his fifties? I'm guessing it was an unplanned pregnancy?

It seems that your child will not be a legal adult until your husband is in his late 60s, possibly 70. This presents the need for more life insurance than may be required of a younger parent (someone who is 40 when their child turns 18 is more likely to be alive than someone who is 70).

People with Asperger's can often learn to function well enough to take care of themselves. People with ASD can range from mildly strange to unemployable and unable to take care of themselves. That will need to be determined as time goes along.

Hubby probably needs to work on his weight and nutrition. That's just general good practice.

One of my classmates growing up was hit by a car while bicycling without a helmet when he was 11. We're 30 now, and he is still wheelchair bound with some level of cognitive impairment. His dad and my dad were fairly close growing up, and we ran into him at the grocery store a year or two ago. They're still able to take care of him (they're early 60s), but when they get unable to take care of him, he's likely to have to go into a skilled nursing facility, as he is a pretty big guy and has no mobility at all.
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Old 12-19-2016, 02:35 PM
 
29,782 posts, read 34,871,258 times
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This is a challenge and the degree of support varies with where you live. Consider where you live now and the quality of support services available in that district compared to neighboring ones. It is not at all uncommon for folks with the resources to move to that so they can avail themselves to better school and community services. School districts vary in their ability and willingness to provide non public placement and that is something to research. Try to find a advocacy group who will assist you and if need be a good attorney. High functioning Asperger syndrome is not Autism and need not limit them.

You need a advocate who can interface for you with the school system especially. Schools are more responsive to parents with advocates and attorneys. If you can find one who is well qualified and has a good working relationship with the individual school and school system it can help avoid many potential conflicts.

Find a local support group and many of your questions can be answered there along with developing a network of folks with similar things to deal with.
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Old 12-19-2016, 02:56 PM
 
Location: Washington state
450 posts, read 373,780 times
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just to clarify DH and I are both early mid 40s and our child is so young we do not know what the future holds other than we may very well be faced with taking care of an adult child in our own retirement. The school support seems ok to good according to the other parents in the area I have met, and the discussions center around getting through the current challenges of these young kids' lives mostly, not on what would happen when they're adults and we are seniors.
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Old 12-19-2016, 03:12 PM
 
12,825 posts, read 20,144,092 times
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Quote:
Originally Posted by misscross View Post
just to clarify DH and I are both early mid 40s and our child is so young we do not know what the future holds other than we may very well be faced with taking care of an adult child in our own retirement. The school support seems ok to good according to the other parents in the area I have met, and the discussions center around getting through the current challenges of these young kids' lives mostly, not on what would happen when they're adults and we are seniors.
It's best to assume you will need a degree of comingled finances until you reach end of life. The degree of comingling will be the key variable, depending on how well your child develops work arounds for dealing with the Neurotypical World. It is rare for someone with Aspergers to become highly successful. It does happen but is rare.

I have a family member in your situation but who is approaching 80. She did not do what I suggest here. To her credit, she is setting up a special needs trust, but her retirement planning did not assume a comingled situation. This led to rather unwise choices.

If I were in her shoes, I would have bailed from her current high COL geography and relocated along with her child to somewhere cheaper. I would have bought a duplex and I would have lived in one half and the child in the other half. I would have set it up to have the child rent out the other half upon my passing, or, if not capable of managing it, I would have set up a trusted 3rd party to do that property management piece.

Alas, such advice was not followed. Now, there will be an eventual care challenge unless my relative passes quickly. And, my relatives child, who is already living in Section 8, will have to hack his way through the rest of his life, hoping the special needs trust plus public assistance will suffice.
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Old 12-19-2016, 03:50 PM
 
Location: Las Vegas
13,890 posts, read 25,327,549 times
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Don't visit trouble and hope for the best! There are so many what ifs you can never anticipate all of them. I never dreamed my H would drop dead at 61.

If your fears turn out to be correct and your child is high functioning, chances are he may be able to live on his own or in a group home. This is a good thing because your child can have a LIFE. This is also a good thing because you are over 40 with a very young child who will probably outlive you by decades. Part of your job has to be preparing for him to be able to survive on his own.

He/she will need a lot of help. You can get the SSDI and Medicaid set up. Make sure the child has a social worker and gets all the benefits. You will be surprised, depending on where you live, there are lots of special programs and educational opportunities. You need to see a lawyer about setting up a Special Needs Trust. This is specifically for individuals who rely on the state for support because an inheritance can make them ineligible for benefits they can't replace on their own. You need to become an expert on all this!

My stepson is special needs so I hear about these issues regularly. Also high functioning. His mom has done the best that could be done. He is in his 20's and has finished his 'high school' and has gone on to 'college'. He has almost reached the point where if he can't be mainstreamed with regular students, his education will be over. We are not sure if he can make it in real world college or not. He wants to do everything normal kids do. He would actually love to be able to work and make money. There are lots of jobs we think he could do but he will be held hostage by SSDI and Medicaid. It really is a Catch-22. If he works, he loses his benefits. And there is no job he could feasibly do that would pay enough to replace what he lost. The ACA would have made it possible to buy insurance based on his income but it looks like that is going away so he has to stay on Medicaid.

You have lots of hard decisions ahead of you. My best advice is to take the hard path that will give him the best chance of doing well on his own!
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Old 12-19-2016, 04:11 PM
 
29,782 posts, read 34,871,258 times
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Quote:
Originally Posted by BayAreaHillbilly View Post
It's best to assume you will need a degree of comingled finances until you reach end of life. The degree of comingling will be the key variable, depending on how well your child develops work arounds for dealing with the Neurotypical World. It is rare for someone with Aspergers to become highly successful. It does happen but is rare.

I have a family member in your situation but who is approaching 80. She did not do what I suggest here. To her credit, she is setting up a special needs trust, but her retirement planning did not assume a comingled situation. This led to rather unwise choices.

If I were in her shoes, I would have bailed from her current high COL geography and relocated along with her child to somewhere cheaper. I would have bought a duplex and I would have lived in one half and the child in the other half. I would have set it up to have the child rent out the other half upon my passing, or, if not capable of managing it, I would have set up a trusted 3rd party to do that property management piece.

Alas, such advice was not followed. Now, there will be an eventual care challenge unless my relative passes quickly. And, my relatives child, who is already living in Section 8, will have to hack his way through the rest of his life, hoping the special needs trust plus public assistance will suffice.
Because high COL areas are high they often have the tax base and demanding parents willing to pay and fund services for children and families with disabilities. Often folks will sacrifice to move into one of these areas knowing the options are greater. I understand your points and it is a challenge that those of us not having to handle should count our blessings.
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Old 12-19-2016, 04:32 PM
 
Location: Sacramento
13,784 posts, read 23,811,113 times
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Wife and I are in our early to mid 60's with an adult child who is significantly mentally handicapped, far more limited than what you'll be facing in the future. Daughter still lives with us, and everything has gone rather well. We have had to significantly adjust our view of what constitutes retirement, but we haven't found that to be too big a deal.

Financially, it varies by kid, some will qualify for some SSI benefits and some won't. Likewise, some will be able to work, at least basic types of jobs, and some won't.

But it hasn't ruined our lives.
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Old 12-19-2016, 06:16 PM
 
Location: VT; previously MD & NJ
2,205 posts, read 1,347,729 times
Reputation: 6341
Quote:
Originally Posted by misscross View Post
I am just looking for some tips or general advice because I don't have a lot of details right now. We just learned our youngest child, a preschooler, may be high functioning autism spectrum or what they used to call Aspberger's syndrome.
I am wondering who gave you the diagnosis. My grandson, who is now 16 and perfectly normal, and smart, was once diagnosed as "being on the autism spectrum" because he had a way of getting engrossed in a topic and wanting to learn about it to the exclusion of all other topics for some long period of time. After reading about autism myself at the time, I had to ask... what happened to "being on the spectrum of what used to be considered normal"?

So before you get too deep into this, I would learn more about the condition and as someone else said, look for a support group in your area where you can get information and perhaps help in finding a doctor/psychologist/whatever-professional-is-appropriate to give you an unbiased assessment of your child's problem/gift. And check again in a few years to see if your child has outgrown what might be normal (but possibly unusual) behavior.

Beware of schools who tend to label kids who don't behave exactly like they think a child should.

Good luck to you and your child.
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Old 12-19-2016, 09:41 PM
 
Location: Texas
202 posts, read 141,170 times
Reputation: 417
It may be way too early to be determining what will happen in the future and whether you will early retire. Kids with Asperger's (yes, I know that is the "old" term) can be in a wide range of functioning. My son attended a therapeutic school for several years. He just missed the cutoff for an Asperger's diagnosis -- on the spectrum he wasn't quite there -- but did have ADHD. The school he attended was mostly kids on the autism spectrum. There is a wide range of intellectual ability and functioning. For example, it is possibly to be highly gifted and be on the autism spectrum. Many students at this school did attend college. My son graduated from college. I am not saying that will be your son. I am not saying that will not be your son. Just knowing someone is on the autism spectrum doesn't answer that question. So, while I think it is prudent to think about the future and how it might affect retirement plans, it may be too early to know the outcome.
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