parenting adult children with ASD

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Sherdegenova
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04 Dec 2016, 5:23 pm

There were always so many workshops and presentations for the basics of ASD - "Newly diagnosed", or "IEP Basics", and lots of "How to advocate for your child with autism". As my son got older, and I had been to zillions of those talks, I found what I needed was more "Puberty and Sexuality for those with ASD", and even "Now that your kid's not so cute anymore and the issues have changed, what do you do?". And don't forget "My adult child with autism outweighs me and has no impulse control - how do I avoid getting punched?"
Yes, the boy has gotten older, but there are still struggles. We parents still need help, just with different issues.

Are there any parents out there whose kids are in their 20's? older? I know lots of parents like us who need the support of a blog community. Let me hear ya! We've got lots of work to do.

Sher



Little House
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05 Dec 2016, 10:29 am

Sherdegenova wrote:
There were always so many workshops and presentations for the basics of ASD - "Newly diagnosed", or "IEP Basics", and lots of "How to advocate for your child with autism". As my son got older, and I had been to zillions of those talks, I found what I needed was more "Puberty and Sexuality for those with ASD", and even "Now that your kid's not so cute anymore and the issues have changed, what do you do?". And don't forget "My adult child with autism outweighs me and has no impulse control - how do I avoid getting punched?"
Yes, the boy has gotten older, but there are still struggles. We parents still need help, just with different issues.

Are there any parents out there whose kids are in their 20's? older? I know lots of parents like us who need the support of a blog community. Let me hear ya! We've got lots of work to do.

Sher

Hi Sher,
I hear you about all the Autism info being aimed at parents of young children. I am in a bit of a different situation than you. I am a second generation caregiver. This means that I am guardian of my 62 year old brother in law who has autism. (He is about 16 years older than me.). His mother is getting older and just can't handle all the day to day stuff that comes with caring for someone living in a group home. No one around here has ever heard of passing guardianship from one generation to the next, but I would guess that in 50 years, it will be a common thing.

I have know BIL for 20 years, and yet I am often overwhelmed with his needs and at a loss of what to do. I would love to have a support group, a place to come to ask questions. And as you pointed out, parent questions are different when the kids are older.

I feel that I have been thrown into the deep end with a sink or swim mentality, (not really, my MIL is still around, but her memory is beginning to fail). I would ask for help for people like me, but I wonder if there are other people like me...
Tracy



Sherdegenova
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05 Dec 2016, 12:11 pm

Hi Tracy,

So glad that you responded!! Wow, you are in a tough spot. Is your BIL living in his original home, with his mom? Are there plans in place for where he will go after his mom is gone? And are you his documented (legal) guardian?

Sher



Little House
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05 Dec 2016, 3:16 pm

He has been in a group home since long before I met him 20 years ago. He had a tough childhood (things were just different in the late 50s and early 60s), but he seems happy now. I never realized just how much input his mother had into his daily life until I started taking over. (Scheduling activities with an organization that take special needs people out, keeping a watch over things like his clothes (too many shirts, not enough pants...), making medical decisions. Even if I don't see him but a couple of times a month, I am thinking about him and doing administrative things a couple of times a week at least - it feels like daily.) We are working with the lawyer right now to make me the legal guardian. It should be legal by the end of the year. But it means that for right now, all legal stuff still has to be run through his mom.

The biggest thing I am trying to do to prepare him for the day when he can no longer spend the weekend with his mom (which may come sooner rather than later as she is just not as able as she used to be) is to have him spend occasional weekends with us. I also have 3 teenagers, so in some ways we just blend him into our daily routine, but of course there are challenges. All of my girls have passed him up in functual age (is that a real thing, or did I just make it up?) But they grew up with him and accept him as he is.

My biggest challenge is trying to figure out which organization does what and how they all fit together. There are at least 4 that he deals with regularly. It is a good thing, but confusing.

He is a great guy, and I really just want to make sure that someone is looking out for him. My time is more flexible than that of his siblings, so I got elected, but I am happy to do it.



Sherdegenova
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07 Dec 2016, 4:33 pm

The word you're thinking of is "functional"...LOL... Functual is pretty darn close.
How great that your kids are so comfortable with him...this will make it easier to just add him in when you do family activities. I'm sure there will be issues with him that you can't anticipate, but you have a 'team' (meaning his mom and your family) to help you come up with a plan for any problems.
In New Jersey, there are Support Coordination Agencies that provide a Coordinator (like a broker) to manage a disabled person's services. That coordinator is what you have to look for - he may (or may not) have one who has put a plan in place for his services or his living arrangements. That key person is the one who will know what agencies are offering activities that suit him and are affordable (I'm betting he has a budget provided by the state that pays for his services). This is what happens in NJ, and probably many other states as well. From what I hear, Ohio is one of the better states for adults with DD/ID (developmental disabilities/Intellectual disabilities).
Now it is possible that his mother never registered him for services...I see that alot here in our state. There was nothing offered when the person was younger , and then the parents got older and got into a routine of doing everything themselves...meanwhile, state started to provide services through new agencies and the parents never took notice. You can call your state's Dept of Human Services or go online to find out.

So much to figure out, right? It seems almost impossible to me, some days, but we don't have a choice in the position we're in. You're a caring,compassionate person and this is what you do.

All the best,

Sher



heartandhome
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30 Dec 2016, 10:56 am

I can so relate with you. It is so hard to parent an adult ASD child. My son (24) has Aspergers. For the last 2 years he has been floundering about doing nothing but "studying" and "researching options" and thinking of business ideas that he has no idea how to implement. He has a college degree, as he is very good at school. But he doesn't know how to put knowledge into practice. He lives at home and works for our small business part time. He is telling us he got accepted into some apprenticeship program but has to move out of state in April. It costs $12k, which he doesn't have. I asked him how he was going to have money to live on his own and pay for the program and he says he will figure it out. I am worried that he will fail and get more depressed and have to move home again. He does not do well dealing with authority, constructive criticism, etc. He does not manage his time well, and tends to go into major depressive episodes of staying up all night on the internet and sleeping all day. We tried to get him to go to therapy, but he didn't like being told what he didn't want to hear from his therapist and quit going. He has never had a real boss or a real job or lived on his own. I understand he wants to spread his wings and fly and I want that for him. I do hope he succeeds, but I also know that if he doesn't we will be starting back at square one. I can't talk to him or give him advice because he gets angry and pushes me away, so I am just having to sit back and watch it all. I wish he would have stayed here and gotten a full time job, so he could have practice at working 40 hours, having a boss tell you what to do, etc.

Sherdegenova wrote:
There were always so many workshops and presentations for the basics of ASD - "Newly diagnosed", or "IEP Basics", and lots of "How to advocate for your child with autism". As my son got older, and I had been to zillions of those talks, I found what I needed was more "Puberty and Sexuality for those with ASD", and even "Now that your kid's not so cute anymore and the issues have changed, what do you do?". And don't forget "My adult child with autism outweighs me and has no impulse control - how do I avoid getting punched?"
Yes, the boy has gotten older, but there are still struggles. We parents still need help, just with different issues.

Are there any parents out there whose kids are in their 20's? older? I know lots of parents like us who need the support of a blog community. Let me hear ya! We've got lots of work to do.

Sher



somanyspoons
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30 Dec 2016, 1:11 pm

Can I just say, as someone who has worked in group homes, how much I honor that you are taking on this role?

So many of the people in group homes don't get this kind of attention. And while yes, they do get their basic needs taken care of in any decent group home, it's never the same as the love and attention that comes from a family member. That's just so precious. And you might never hear it from the workers in you BIL's group home, but we do notice the work that you are doing and we do appreciate it.

How many conversations have I had that go something along the lines of who has who involved in their care? "oh, Mr. Y doesn't really have any family active in her life. He gets a visit once a year or so." or "Mr. X has a wonderful sister who takes care of that. He's a lucky guy!" It's just so important for the residents. They feel wanted and part of mainstream life. And they look forward to your visits and your phone calls.

So, take note that according to the description you just gave us, you are doing more than average. So give yourself a pat on the back. Don't add to your caregiver stress by thinking you can never do enough. Of course, there is always more you "could" do. But that's not a helpful conversation. You're doing what you are doing. And that's great.



bookworm285
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14 Jan 2017, 9:58 pm

@ heartandhome

I can relate. I have a 24 year old adult daughter with ASD. She is in college now, but I worry about what will happen when she no longer has that structure. She struggles in every area. She is going to need to move on her own after college, but I can't find the resources to help her live independently.