As a Autism parent, the are a ton of things that cause me great concern. Perhaps the scariest thing for me is thinking about the future and wondering what it has in store for my kids. What will happen when my wife and I are no longer around to take care of them?
These are the worries of many special needs parents.
What do you find most concerning or worriesome about the future? Is there one thing in particular that has you the most concerned?
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i have a crhonically ill child that is 21 and looks like he will stay chronically ill (not being negative) for the rest of his life. If something happended to me, I don’t know who would be his advocate for his health. I have had to fight for whatever stupid reason I think way too much to get the doctors to get with the program. With his hospitalizations there have been 3 differnet times the hosptial has tried to kill him on accident. Somebody that cares has to be at the hospital wtih him if he has to go. He would live with his brother so that is taken care of, but his brother cant take off work all the time to take him to appointments etc. I also know my oldest son is scared that his brother would die on his watch (how terrible he must feel) It is worse too that the sick brother knows that older brother is scared about him being sick and trys to act “not sick” as possible (how terrible that must feel). It is worse that both brothers know what each other feels. i hope i live a long time and can get him functional since he is mentally ok, just so f****** sick. Can you tell how much all this upsets me. Yall have it worse than me for sure. Some of your kids have autism and something else along with it so you also have to try harder to keep them alive. IVIG starts Thursday. He has to feel better.
i agree he has to learn too, but I also can imagine with his mental illness and his autonomic stuff going on, school work can f*** off. He or yall dont need the stress of the home/classwork. Just let him go to school and as long as he isnt hurting anyone that would be fine. Seriously with our education system of learning so many kids have to go to remedial math and english that they had for 12 years when they go to college!!! (not saying anything bad about people that have to do that for real). So my point is at this point there is no point (to me, but he is your kid) for him to learn or work on school work right now. You can revisit later.. Laundry yes, dishes yes (I don’t know if you all have “Life Skills” classes were you are for autistic kids). He has to mind you and be good with his brothers. I would focus on that but you already know how I feel and why about Gavin and school
I have high functioning Autism and I don’t worry about the future at all. I have no real concept of the future.
My worry is what if something happens to me?
Not only am I an autism parent, I’m also an adult with autism. I can relate to Avia’s comment. I have a masters degree but am unemployable. I’ve even been rejected from volunteer work. Honestly I couldn’t get arrested!
There is a big lack of supports and services for adults.
I completely agree. My son is Hf, and we are hard on him. Not out of meanness. But because the world wont/doesnt see his special needs, and he has to learn to function appropriatly in the world one day. I know he has the capability, but with out pushing extra hard, he will never reach that point, where he learns that he has tto take responsibility. Its a hard spot to be in as a parent.
We are concerned about how he will be treated in middle school/high school…if he will be bullied because of his behaviors…if he will have any friends.
Avia Batya that’s a really good point.
I am as an Autistic person, both for my generation and later generations. There is not enough infrastructure in place to deal with higher functioning adults and the way they’re cutting money for social services does not bode well for the lower functioning set either. Personally, I am especially worried because there is an 80% unemployment rate for Aspies and part of it is prejudice, office bullying and mismanagement. This isn’t going to get any better if the economy doesn’t improve or help does not become available for people functioning on that level.. My parenst are already 69 years old and my sister once told me that I have no business asking for “special rights”. I did everything I was supposed to and yet I have this dramatically lowered chance of any of it mattering. Sometimes I feel that I should have become an automechanic straight out of high school and been done with it.
Amy Linder I totally get it. That’s one of the reasons why we are so tough on our oldest because he HAS TO LEARN. The world is very unforgiving.
What if he never gets impulse control under control, and does something to wind up in jail? And I can’t help him, or no one listens to me? Or the police beat him because they “consider him a threat” when he is not?
What happens if we can no longer safely manage our oldest at home?
What if he reaches the point where he is capable of joining the armed forces, and they crush his life long dreams because of a diagnosis?
What happens if something happens to my wife or myself