POD "A" (Parents of Disabled Adults)
POD "A" (Parents Of Disabled Adults) forum/online support/shared advocacy network/information exhange for parents of adult children with mental/learning disabilities.
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
16 days ago
I started here a while back while dealing with my moms dementia. She passed away 2014. My disabled son is 47 and is sometimes so draining . I honestly dont know how I made it with him and my mom and I was also working . I gave up using my college education to get a decent job. I had to take several junk jobs that worked around my son. I have done this since I was 18 years old. No family help etc. My son is intellectually disabled and also mentally ill. He is OCD and at 16 they said schizophrenic. Of course, he was diagnosed with several labels . After a while I realized labels dont meant anything. Unless you fit in one that has a specific group support. He throws away everything !!! My clothes....shampoo....what he thinks is obsolete........new things...furniture..... Recently I took him to the mental health emergency and they were no help.....they wanted me to take him to the developmentally disabled program. Since he has both disabilities, neither wants him......the psych hospitals dont and nobody wants mental illness. He cant live alone....has been with me mostly all his life. No program , no day anything.....when I worked he called me constantly and also my mom before she had dementia. My husband is no help and has called the police on my son for throwing things etc...!! I cant find support groups for parents taking care of disabled adult children at home. In this country ...they dont talk about this on tv etc... ...we need plans for our vulnerable citizens......not group homes that stack them in and treat them worse than animals...... I am in Michigan........Macomb County.......anyone out there ?????? carol
17 days ago
Im interested in changing the rules concerning caregiving parents. They need more support and better working conditions.I live in NJ where the DDD has so many silly rules....and the state itself does not acknowledge the huge burden we deal with. Anyone else mad about this???
Example...why cant we take our kids off our taxes after the age of 18 if they are living at home and legally disabled to the point where we must caregive 24/7? You cant take them off your taxes unless its directly medically related yet we spend a fortune on our son just keeping him entertained....along with food, clothing, medical co pays,personal items, transportation etc.
Shouldnt people get a tax break for the loss of income they experiance when they stay home to care for their disabled child? especially when they have no choice?? my son is a non verbal autistic with epilepsy, with
OCD, ADD and Tourettes but he is 3938 on a waiting list for group homes.
Why are they trying so hard to shut down our disabled work shelters???My son cannot give you minimum wage quality work in the community and the shelter was a good place for him to be.With a shellter work gone he sits in his room all day with nothing to do....no one can find him a job
Why cant guardians be paid caregivers?? if someone is a guardian because they are loved and trusted enough to make decisions for a person, wouldnt it be reasonable to assume they would be a better caregiver than a stranger you get from an agency???
And why are we forced to go through agencies? My sister was a paid caregiver for my son for two years. She had to join an agency to do it. She made 18 an hour. Easter Seals took 3 dollars out of every hour off the top, which brought it down to 15. Taxes and fees watered her pay down to about 8 dollars an hour. 8 dollars an hour doesnt got you top notch help in most cases.
26 days ago
My son is 32 years old chronologically, but due to a TBI was diagnosed as 9 1/2 to 11. Like most disabled adults, they want to be like any other adult. Am I being just a overly concerned, over protective parent if my gut instincts are telling me a "normal" woman seems to need a human ATM. And HER friends noticed too. And now, he's telling me that his social security payee should pay her bills, (because she moved him in with her) and he is supposed to be her bread winner?
Jeff in Texas said...
28 days ago
I am the 54 year-old father of a 22 year-old daughter with social communication disorder, depression, and nonverbal learning disorder. My now ex-wife fled to be with an old high school boyfriiend in another state a year ago and left me with all of the emotional and financial responsibility for our daughter. I am exhausted and living paycheck to paycheck. This is not where I ever dreamed I would be at this point in my life. I am trying to see the light at the end of the tunnel but it seems to be moving further and further away.
Patricia Madi said...
28 days ago
I am the mother of a 23 year old male with Cerebral Palsey. Its beginning to get really hard on me. I am fortunate to have a part time job which gets me out of the house for a few hours a couple of days a week but he is still home with no where to go. Like many of you have said my son has been on a waiting list for approximately five years. His number is always in the 1300's so realistically I know there's a good chance he probably will never get into an adult program. I have even met other mothers whose children are over 30 years old and have never been called. Its really a sad situation for all of us that has to go through this. There are so many things that I would like to do in life but can't. I can only go certain places because he has seizures and is wheelchair bound. We as parents need some type of help so that we may enjoy life too. Its like you dont want to send them away to a home and you don't want just anybody coming into your home either to stay with them especially if they are non verbal and will not be able to tell you anything that's going on. I have family but everyone has their own lives to live and no one seems to want to hear when I say Im tired and need help. All I can do is to continue to pray that we will soon receive some type of assistance. No one truly understands what we go through.
about 1 month ago
Hi! My good girlfriend is taking care of her developmentally disable brother. He is almost 50. He has changed his behavior. He's wetting the bed every night and has even relieved himself while watching tv in his chair. She just doesn't know what to do!
Anyone else been through this and have ideas?
about 1 month ago
Hello, my name is Hope. I have a child that is 24. She is autistic and is currently receiving disablity. I am about to loose my job because I need to stay home often to tend to her and her needs. She does not receive any services and I am told she is on the waiting list. 6 years she has been on the waiting list. I am unsure of what options I have. I called dss today and they told me about a day program. I don't believe she would benifit from this type of program. Any help would be great!
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