(originally written & published on May 14, 2012)
Ok, I've had a blog post rolling around in my head for a few weeks and I keep saying... I'm gonna write it some day soon...but here's the gist...
What happens with our kids with severe ASD after mom & dad are gone?
So do you set that up while your still alive? Do you move him in while your still alive?
In my mind I picture Kyle living with us til we die... And then moving somewhere gorgeous like a farm with horses the very next day...
But that's not realistic right? So how does it all work? This is where I need help and advice from the moms and dads of all the severely autistic adults in their 20s and 30s. Where are they? Oh that's right, we're in the middle of an autism epidemic so I guess there's not a lot of severely autistic young adults out there...
But there's got to be some... And there's got to be some of the moms and dads of severely autistic young adults who are blogging about their experiences.
So let's hear from them!
What's the plan? How do you figure
this out? Cuz i sure as hell am not going to leave it up to the government to place my child somewhere...
Now King Kyle is our only child so maybe we need to worry about this more than some of you with other children... but even then how can you guarantee that your other children will outlive your autistic child? Or how can you guarantee that your other children will always take care of your autistic child after your gone. You don't. There's no guarantees in life.
So what's the backup plan? Where's the instruction manual?
I mean the wife and i are both only 42 years old and Kyles only 9 so we have plenty of time, right?
And we've done our due diligence. We've got our wills completed last year. We also set up a special needs trust in my sons name. (I wrote about the wills and trust HERE)
And I know about the law about applying for guardianship of your disabled child before they turn 18. I got all that covered.
It's just the nitty gritty of where he will live and when that keeps me up some nights.
I mean I want to pick the place and investigate it fully before making a decision. And I'd like to know that my son is happy there and can make that transition. And I'd think the transition would be easier if mom and/or dad were still around for visits and consistency.
So I guess this should happen before we die. But when and how and where?
I know of a few people who are on the boards of some residential facility type places and they got involved when there kids were young so they'd be on waiting lists to get their kids into the place of their choice when the time comes...(but again when is the right time?)
And I've had visions of retiring from my current job (or getting laid off which is A LOT more likely) and then figuring out how to start up my own non-profit and create my own group home from scratch....maybe go in on it with some of the other autism moms and dads who are in our lives now. So that all our kids could have a place and we would be heavily involved in hiring the staff, finding the location, etc.
It sounds like a great idea but I wouldn't know the first thing about it...or where to start...
But I think it's something all us autism parents need to think about if you think your child will not be able to care for themselves.
And I know many will walk away from reading this thinking "he just wants to send his kid away, I've read his stuff before, him and his wife like to go out a lot and they're just looking to get rid of their ASD kid in their retirement years.. I'd NEVER put my kid away..."
To you I say that you're being incredibly naive. I think the fact that I'm asking these questions now, when my kid is only 9 shows just how much I care.
I want to prepare for every possible scenario. I want my son to be happy. I want him to thrive and I want to know that he's well cared for long after I'm gone.
And I guess that means that I want to be heavily involved in where he's going to live after me & the wife are gone. And since I'll want to make sure that he likes it there I guess he'll have to move there before we die...
So where's that instruction manual? Where are all the autism parents leading the way on this one? I'd like to hear from others who are going thru this or have gone thru this.
Am I the only one morbid enough to think about this stuff? Is anyone else staying awake at night pondering these questions...?
-------------------------- -------------------------- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20 This way I can make a little money to help pay for my son's after school & weekend therapies. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!