What will happen to my child with #Autism when I’m gone?

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I’ve talked about this many times.  I think it’s really important to voice our fears or concerns for our child’s future because it will help everyone focus on our common goal.

Our common goal should be to spread #Autism Awareness so that our children can have the brightest future possible. 

One of the things that I think transcends our differences is a common concern or fear for our child’s future. The biggest fear I have and that I hear from other parents is what will happen to my kids when I’m gone?

That terrifies me and keeps me up at night. 

I’m doing everything I can to prepare them for the world and prepare the world for them.


I wanted to openly and honestly discuss this because there are many things we can do to help ensure that our kids are cared for.
I thought we could share ideas or things we can do to prepare our children with #Autism to venture out into the world or simply help to prepare them for life after we aren’t here.

I know this is a really scary and depressing thing to think about but it’s reality.  We can’t be here forever, what will happen to our kids when we’re gone?

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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I’m a Mum to a 6 year old and this question absolutely terrifies me! My son is my only child as his behaviour is very challenging I didn’t have another as planned. My marriage sufferred as well as friendships which as you all know is very isolating. I still haven’t found a good enough answer to this yet.
Much love


This is something that scares my husband and I should something happen to us before our boys are grown up. No one in our family will agree to be a guardian for our oldest son, because of his autism and behavioral problems. His PANDAS can be really scary and frustrating to deal with. I am sure someone would take in the youngest, who is neurotypical. But we are terrified the oldest will be placed in foster care by both our families, and who knows what would happen to him there. We have some relatives who are too unstable to take care of him, and the others simply don't care. It's very, very sad.  We are not as concerned about when he grows up. He's intelligent and high functioning and we are already working on his independance skills, and teaching his little brother to watch out for him. It's who can raise him if we part from this world before he grows up.


@rebeccamagliozzi This is one of my motivations for taking care of myself, or at least trying to.


I pray to God, that's the best thing I can do, and work hard so that I can put up some trust fund or business for her. I pray especially that my daughter will have a kind and caring husband when she grows up 🙂 She is an only child and an autist. However, I thank God that she is high-functioning and most of the time can manage on her own. 


@Lilac I understand, trust me.


[Blog] What will happen to my child with #Autism when I'm gone? http://t.co/cZaaD4YW via @Lost_and_Tired


@troycorley @Lost_and_Tired Thinking about it always makes me nervous. How could you know he or she feels all right? :/


@Lost_and_Tired Damn, this brought to mind my worries about how my brother and I will take care of our sister when our parents die…


@troycorley thanks for the RT


@ASAPAspergers @lost_and_tired have faith, (literally) get on you knees and pray!


@ASAPAspergers thank you for the RT


@Lost_and_Tired It is important to prepare for it with a clear will and if possible life insurance to cover the support and help as adults.

Patrick Toussaint

This last year has really driven this home for me – my wife and partner of the last 22 years of my life lost her battle with ovarian cancer in April, and if it wasn't for my 22 year old daughter's help, I don't think I would have been able to last as long as I have with my two autistic boys (my 21 year old son is a non verbal autistic who has refused to leave the house since his mother came home from the hospital in February, and my 20 year old son isn't so hard to handle, but he isn't able to help with things like his sister can).  I've come to the heart wrenching realization that I have to place both my boys into a group home for different reasons.  The younger boy, I feel, is being held back by living at home with me – he thrives more in a group environment, and it would do him good to be more on his own with a chance to come visit me on weekends and stuff.  The older boy, on the other hand, is bigger than me, and I just can no longer provide the structure that he needs to get his life on track.  It tears at my heart to do these things, but at the same time I know in my heart that it's what is best for both boys.  In any event, needless to say, now that my wife is gone, I've really spent some hours worrying about what would happen if something happened to me.  I suppose I've rambled enough and I should get back to work now – I know I don't post or interact much, Rob, but I do lurk – and thanks for posting your blog – it helps remind me I'm not alone in my situation – there are others out there, and that makes it easier somehow.


 @Patrick Toussaint I am constantly amazed at ASD parents who soldier on in spite of appalling odds and circumstances that most NT parents would fold up under.  Patrick–you are amazing,  Even in the process of grief, etc., you are still able to see what the best way to care for your boys.  If you get any nonsense from anyone, send them our way and we will mince them into tiny three letter words!  I have just one question–will you try to get them placed in the same home?

Patrick Toussaint

 @Batty  @Patrick Toussaint I'm not sure – the ideal would be in the same home so they won't feel so alone, but because their needs are different, that may not be feasible.  Time will tell – for now, I'm just putting one foot in front of the other. 😀


 @Patrick Toussaint I'm so sorry for your loss. You are an absolute inspiration. Please feel free to retire your "lurker" status. I would love to get to know you better. We can all help each other. 🙂


In Virginia we have had a lawyer come and speak to our parents support group about setting up trust funds and such for our kids that will never be able to make it on their own.  There is a group here that operates homes for people with disabilities.  Relatives give a house to this group (because if you leave it to your disabled child the government cuts off their assistance) with a stipulation that their child will have a lifetime home.  They will place one or two other people with disabilities in the home and the group provides oversight and workers who check in daily and make sure things run smoothly.  The group covers all the costs of upkeep.  Each resident pays rent and buys groceries.  So far there has been great success with this model!  
The action group I belong to is the Lynchburg one, but here is the link for all Virginia groups.  You might be able to steal ideas or find new resources:&nbsp ;http://www.autismva.org/whatwedo/autismactiongroup
Just a few thoughts—


It is something that regularly crosses my mind about my daughter as well.  We can never have a diagnosis of autism for her because her cognitive function is so impaired that they can't tell properly apart from to say she has 'autistic traits'.  Along with her many other problems it worries me that we wont be able to care for her as she (and we) get older and if there will be adequate help for her in place before we shuffle off.
I think it is a sign of a dedicated parent that we think about these things but as I write here on night 3 of no sleep I sometimes wish for a different life!Stay strong fella, keep smiling 🙂 


@Kiboomu thx