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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.

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7 days ago

Hello,

I am a new stepmother of four months to two adult developmentally handicapped children, who also have a severe form of muscular dystrophy. i have lived in this home with them for 8 months. Their prognosis is an early death. They are 30 and 31. It's been overwhelming from the beginning. They are sweet, but overly talkative, loud, resistant to using their walkers, etc. There are precious times, but most of the time it's horrible. I cannot lift walkers and especially not a wheelchair, which no one uses yet. The youngest just began a CPAP machine, and the older has a sleep study scheduled for next week, so he may need one as well.

Today our social worker gave me info about a possible placement for them, it is assisted living for the handicapped. My husband thought over what I found out. (He was widowed after their mom died of the same disease.) Later he said he didn't want to do anything right away, not even put them on a waiting list, until he was SURE he would not resent me later for urging this along. (Because he never took legal guardianship, just for medical decisions, they are considered independent. They could refuse to go to assisted living.)

He has always said he married me because he loves me, not to be a caregiver. He works 2x a week from home, but gone the rest of the week.. I am with them far more than he. He encourages me to visit my own mom, children, and grandkids, who live out of town. So they are alone a portion of those times that I go. The dr says that the oldest can still drive and that the disease is going to take its course.

I was hoping to get in-home help for them, since they are easily bored, have many medical issues, and love talking to others. But the family income is over the maximum to qualify. They are considered dependents by the IRS because he pays for all food, housing etc.

I am a loving stepmother, however, this is not just hard, but feels impossible at times.

Thank you for listening.

Mily4luv said...

9 days ago

I am so sad about all the parents including myself who can not even work or are trying and the help for the loved one is on a waiting list. I am so overwhelmed by this situation for many parents like me. Not enough money to pay the bills and the only solution is to find a job, there is no quick way to solve this even for the doctors is the same. Clinic is closing and patients are piling up on a waiting list.

marganit said...

8 days ago

Cloryder said...

11 days ago

I am a single mother of a disabled 21 year old. I am unemployed and have no financial resources other than my sons disability benefits. I have no family or friends that can help with anything. We live in a place not safe and we have no vehicle. We have no extra money to do anything. We need help bad.

11 days ago

MsTiff said...

1 day ago

Worried63 said...

15 days ago

I am the parent of a 35 year old son with a developmental disability who lives in a supported apartment complex. He spends a great deal of time trying to meet people on the internet. He invites people to his house to meet them. He has had money and other items stolen from him and I'm afraid he will end up getting beat up or worse by these people. Everyone at his house says their is nothing I can do about it.

Worried63 said...

15 days ago

6 days ago

PS Parent said...

15 days ago

After 18 years of advocating for my son with autism (20 years old with "ocd presentation" and panic), I truly feel overwhelmed. He has been sent home for instruction a few hours a day given his "unpredictable aggressive behavior." I could go on with details (school meetings, BCBAS, behaviorists, natural approaches, attorneys, psychiatrists, meds etc) but I cannot believe I am at a point of utter sadness and fear. I always found a way to a new idea, insight or a way to see the light or something positive but it's been about a year of this with no light in sight. If anyone out there has an adult child that can become "aggressive" or physical and has ideas and resources please let me know - who will come to do respite (which he is approved for and has medicaid waiver) if he might lash out at them? I live in New York State (mid-state). I have been told that anyone with DD, ID or mental illnesses, ASD ,etc with histories of physical outbursts end up having to live at home because "no one will accept them into their programming..."

PS Parent said...

14 days ago

13 days ago

HeymoeW said...

22 days ago

Hello, I'm mom to an 18 yo girl with multiple physical & cognitive disabilities. She has qualified for SSI, but her benefit is being reduced because our support of her is counted as 'in kind' monetary support. I was told if we charge her room & board, her benefit may be increased. I just have no idea how to word the letter informing the SS admin of this. Also, it is my understanding that it needs to be based on 'fair share' but I'm not sure exactly what to charge. (Mortgage + food bills + utilities divided by number in household?) Thank you.

21 days ago

Mike N said...

18 days ago

Concerned RT said...

24 days ago

Reaching out for a woman who has many chronic respiratory, immune deficiency, and autoimmune illnesses, who is a single mom to two young adults that require multi-complex medical care. Both children receive disability, and mom had to come off disability and begin working after a divorce which resulted in no financial support from the husband. Due to her own complex health issues, she misses on average 2-4 months of work a year. Her family requires 3 doctor visits per week, every week, they each take 30 different medications, and when she ends up in the hospital, her kids end up with her because they have nowhere else to go. I'm reaching out here because I've searched everywhere for resources to help her somehow, and came up with nothing. She's in Texas, and genuinely needs help.

Kalb said...

24 days ago

I am the parent of a 19 year old who has epilepsy, is mentally delayed, and has a host of psychological challenges. He is unable to go to school, go into stores or restaurants. His world basically takes place inside our home. His older brother has been looking out for him during the day while my husband and I work, but this semester his classes and work schedule will not permit him to look out for his younger brother. My husband and I have been trying to look into applying for a home caregiver, but so far we have been given the run-around and don't know WHERE to start. If anyone has any information they can share, I would be very grateful for their help.

23 days ago

21 days ago

NH Mom said...

30 days ago

I have a 38 year old developmentally delayed daughter with schizophrenia, though mild daily battles. Feel so alone, can't reason with her. Where is our help?

JanaLawton said...

about 1 month ago

I care for my 36 year old daughter who has bordèrline personality disorder and epilepsy. Because of the paranoia she experiences, she prefers staying home. So she and I are pretty isolated. And it is difficult to get her to commit to regular counseling which would help her tremendously. I would be interested in starting a local support group for caregivers. Has anyone participated in a local support group for caregivers of disabled adults?

NH Mom said...

30 days ago

25 days ago

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