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Parents of disabled kids thread...

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Replies to: Parents of disabled kids thread...

  • Cardinal FangCardinal Fang 18421 replies159 threads Senior Member
    Is there another article that frazzled read, other than the one by the Chicago mom who has her adult autistic son living at home, and is dealing with seeing her friends with empty nests while hers is not empty? I'm not clear why her situation doesn't have a "happy ending."

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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    CF - The article I read referenced an elderly parent (in his eighties?) who killed his wife and severely disabled middle-aged S and D in a murder/suicide, when the S and D were home for a week-end visit. Although the parents were elderly, they had arranged for the children, who remained at home well into adulthood, to live in group homes away from the family home, and I am trying very hard to imagine why a parent would want to murder their adult child in this sort of situation.

    This is the first murder/suicide story I have read from the autism community that has had this type of twist to it. Typically there is an overwhelmed parent with mental illness exacerbated by stress, and a high-needs child who is still living at home.

    Some time back we watched a Chinese film, Ocean Heaven (Jet Li) , that addressed the issues parents face in arranging care for their disabled child after their death. Jet Li's character was a single father diagnosed with cancer, whose autistic son was living with him, and the film began as the father attempted murder/suicide and the son stopped him, and proceeded through the steps the father took to find an arrangement for his son.

    I think you read "Notes of a Not So Empty Nester" or something of the sort.






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  • Cardinal FangCardinal Fang 18421 replies159 threads Senior Member
    Have you got a link? The article Mary13 pointed to is an op-ed by the mother of an adult autistic. He has aged out of school, and is still living at home. The mother talks about how other parents are now celebrating their empty nests by going to Hawaii and eating chocolate covered cherries, while her son is still in the nest and will be for the foreseeable future.
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    The link that Mary13 provided (Chicago Tribune) apparently links to a different story now than it did a few days ago.
    I do not recall the header for the other story - perhaps someone else remembers?


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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    ok, the article ran a couple of days ago in the tribune; look for "Family Speaks out about Deaths of Four in Elmhurst." Apparently the Chicago Tribune is running a series of articles about the plights of families whose children have aged out of special education programs.
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  • musicmommusicmom 2460 replies89 threads Senior Member
    Anyone use Care dot com to secure caregiver/support for loved ones?
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  • MaineLonghornMaineLonghorn 39905 replies2196 threads Super Moderator
    You don't need to spell out websites. If it's filtered by the website, asterisks will appear and the link should be deleted, anyway, because it's a violation of the Terms of Service to "spell around" the filter.
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  • musicmommusicmom 2460 replies89 threads Senior Member
    Ok, ML. I'm a rule follower by nature, so help me out.
    I AM allowed to ask opinions of other possibly helpful websites, or no?
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  • MaineLonghornMaineLonghorn 39905 replies2196 threads Super Moderator
    Yes, generally speaking. If ASTERISKS show up when you post a link, that means the site is NOT allowed and you should delete the link right away. Does that make sense? Here is a section from the Terms of Service:

    <<Links to Forums, Blogs, Social Network Pages, Photos, Videos, and Personal Sites. Please do not post links to other discussion forums, blogs, personal sites, or other non-authoritative sources. This includes Facebook, Myspace, and similar sites. In order to fulfill our mission of being the best college discussion forum, we want important topics to be discussed here at College Confidential. Linking to discussions elsewhere defeats this purpose. Links to non-authoritative sites like blogs, personal sites, etc., can't be researched for validity on an individual basis and hence are not allowed. All such links will be removed. Similarly, please do not post email addresses or solicit private messages or email communications from other members. While occasionally you may choose to contact an individual member via email or private message when the member accepts such messages, solicitation of such contacts in the forums is not permitted. Given the heightened filtering of inappropriate contents on YouTube, we are removing our prohibition to links to that site on a trial basis. Links to inappropriate photos, videos, etc. will always be prohibited.>>

    There ARE gray areas. For example, if a brand new user linked to Care.com, we would probably think it was someone advertising the website and would delete the link. But we know longtime members are trying to be helpful and the link would be OK.
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  • musicmommusicmom 2460 replies89 threads Senior Member
    Got it now, thanks.
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  • MathildaMaeMathildaMae 253 replies125 threads Member
    Not a parent of a disabled child but I read a book a few years ago called Bloom by Kelle Hampton about the birth of her daughter, who has Down Syndrome. I don't know why I was drawn to the book, but I actually started following her blog (which I won't link to -- you can find it by googling her name I am pretty sure). Her daughter is much younger than I would guess most of our kids are but I still like following what is happening with her and her daughter.
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  • Bromfield2Bromfield2 3682 replies37 threads Senior Member
    ^^^ Along that same vein--I just finished The Marriage Plot--it's a book about a love triangle that starts when the main characters are in college and continues. One of the main characters is bipolar. From the little I know about bipolar disorder, I believe this book describes the cycle of the disorder in a gripping way and, if it's accurate, it presents the reader with information about how very difficult trying to come to grips with this disorder must be for those who have it and how it's especially difficult for those who are close to someone who suffers from the disorder. The book gave me great respect for the families of those with bipolar disorder who hang in and keep trying to provide support. Before I read the book, I wouldn't have thought of bipolar disorder as a disability, but after reading this, I think bipolar is a disability.
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  • MassmommMassmomm 4086 replies84 threads Senior Member
    Thanks for starting this thread. My nephew has autism. Although he is verbal, he has severe impulse control issues, and has been raised by a mother with very obvious, but sadly untreated, mental health issues. He is currently in a residential school in LA (my brother and sister-in-law live in Northern California) but will soon graduate. The entire family is concerned about his future. And he does have a future. He is a very thoughtful and interesting person. He just can't relate to people and when he gets angry, he responds with violence.

    I think a group home and some type of vocational program are in his future because he is not able to live with his parents. (They have a younger child and Social Services will not allow his brother to live there because he is violent.)
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  • dstarkdstark 33322 replies919 threads Senior Member
    Massmomm, Good wishes to your nephew and your family.

    I think this week we are going to explore future housing options for my daughter.
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  • dstarkdstark 33322 replies919 threads Senior Member
    edited September 2014
    Talked about housing today with the head of my daughter's day program and my daughter is going to continue to live with us for awhile. Maybe quite awhile. Safety is better at our house. There are downsides with having roommates. I kept thinking about how great the social atmosphere would be with roommates, but roommates, but roommates have emotional baggage and it does not sound like it is worth it.

    My wife suggested we eventually find a teacher, or artist to live with my daughter for subsidized rent someday.

    The teacher can make sure my daughter is safe.

    Safety is a big issue for me. ;)
    edited September 2014
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  • lmkh70lmkh70 803 replies173 threads Member
    I have 3 disabled children. I am falling apart under the pressure these days. I just sit here and cry half the time. Since we found out this is genetic, we decided to not have anymore. I have not had my period in near a year. And now I found out I am pregnant again. Prenatal testing is showing 50% chance of disability now. I have failed. I just fail over and over again and others feel free to scold me all the time. I work my tail off to care for my children. Now, I cannot even send my non-disabled ones to college. I feel like I have fought and fought and fought, ever since my first child was born, and here I am, still, fighting. But I am losing my fight.
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  • dstarkdstark 33322 replies919 threads Senior Member
    No....

    You need to talk to a therapist. It is not your fault.


    A friend came over and said, "It is not your fault you have a disabled kid".

    I looked at her. I was startled by her comment. It never occured to me it was my fault. It is not my fault.

    Raising one disabled kid is difficult enough. Can't imagine raising more.

    Do not give up. You are helping people. Your life has meaning. You are helping people.

    Don't be so hard on yourself. We do the best we can.

    If somebody scolds you, tell him or her to @ off.
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  • Cardinal FangCardinal Fang 18421 replies159 threads Senior Member
    Oh, ((((lmkh70)))), I'm so sorry. Many hugs. You have a tough time just by bad fortune, and not because of anything you did. You must be a very strong person to handle three disabled kids.

    People don't scold me for having a disabled child, perhaps because they know if they did, I would round on them with all my guns. As you should-- how dare anyone scold you for having disabled kids? How dare anyone express such a rude, insensitive position? An icy glance, a frigid "I beg your pardon?" and a quick exit are your friends when you encounter such appalling rudeness.

    Congratulations on your pregnancy, and best wishes for a healthy child. If your baby turns out to be disabled, IT WILL STILL NOT BE YOUR FAULT and your child will still be lovable, a person of dignity and worth.

    I agree with dstark that a therapist, a priest, minister or rabbi, or some other counselor might help. If they have the temerity to blame you or accuse you, leave and find someone who knows their business.
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  • dragonmomdragonmom 5931 replies154 threads Senior Member
    Lmkh, please don't listen to anyone insensitive to try to make you believe that this is your fault. Did you select your genes? I didn't. Nobody I know did. If this is a cultural issue and your family is blaming you, please look beyond your cultural group - local school district, etc. congratulations on your new family member. Every person is capable of feeling their parent's love and is inherently worth that love.
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  • mamitamamita 233 replies1 threads Junior Member
    Lmkh-- Agree with what everyone else is saying. Please do not listen to what anyone is saying. Also, about finding someone trustworthy to talk to. And, finally, depending on where you live, see if there are any other support services or organizations (such as respite) that can help you get a break from time to time to take care of yourself... hugs
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