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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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Muggsy56 said...

2 days ago

I am the mother and caregiver of my 29-year old son who at the age of 14 had a pilocytic astrocytoma - non-malignant. This left him with speech, cognitive and physical disabilities which he was able to rebound from quite a bit thru intensive rehab. But a year later, he began having seizures which are still uncontrolled at present despite being on 4 anti-seizure meds. We have been to all sorts of neurologists and he has gone thru extensive testing to see if he is a candidate for surgery to help/eradicate the seizures at two different times. The latest one confirmed his case is too complex to handle with surgery ever. Ten years to almost the day we found out he had a tumor, he had a hemorrhagic stroke at 24! This really debilitated him and worsened some of the existing disabilities from the brain tumor plus it deeply effect his vision and balance. Despite repeated follow-up rehabs following the extensive rehab he received right after stroke, he is very much still a fall risk even using a walker. Impulsivity, and ataxia are also new symptoms he deals with every day. My son is 6', weighs over 300 lbs. and I have rheumatoid arthritis that my doctor still can't find any of the new drugs to help stop the progression of this painful disease. Bless my son's heart. He puts up with my bad moods when I'm feeling awful (mostly because I can't/don't feel well enough to take care of him like I need to, nor be able to take care of things around our home like I need too!). My husband and I don't know where to turn as far as getting help in the home. He is already on SSI and Medicaid but we are thinking it would be best for him to move out to a facility that he could be taken care of better. He is really lonely and needs friends badly. He functions on a high level but the impulsivity, ataxia, short-term memory are all things that require him to need a "shadow" throughout his day. We just don't know what to do, and I frankly am so fatigued and miserable with the RA/fibromyalgia, that I am having difficulty following through because of feeling overwhelmed. Does anybody have any suggestions as to what to do first? We tried talking with a caseworker with DHS when we lived in TX, but found him to be very unhelpful and didn't seem to want to engage with us with our situation. He just wanted to pass us on to some other agencies and didn't really offer up any real advice or direction. So I'm not feeling really good about that path but would like to know how to find a good caseworker that we feel we could develop some type of rapport with. I still drive, but my son needs to go with me. We both use walkers. He sometimes can help with loading them, but on days where he has multiple seizures, I'm on my own. Help!

Jennuwhine said...

3 days ago

I have a 23 year old son who had a brain tumor which basically left him with COMPLETE TBI (traumatic brain injury). We live in Texas and he has been going to Providence Place for the last two years. they have been working with him on independent living and working skills. its a school/dorm style living situation. he yells out in his sleep so he isnt able to have a room mate.. Since this is not a permanent situation, we are currently looking for his next living situation. preferably an assitive living type situation. there seems to be a REAL shortage of living situations for higher functioning special needs that still require a lot of assistance. even all of the case workers and specialists hes working with now seem at a loss since group homes are out of the picture due to his yelling out at night.
he doesnt qualify for any of the MHMR programs since this isnt something he had at birth, it was an "aquired brain injury". does anyone know of any places in Texas or nearby, or have any other resources they could share? Weve visited several "special needs communitites" and most of them seem a little "low" as compared to his level of functioning. I know this is a lot. Thanks for reading!!

Ulin said...

7 days ago

Hello,I'm a 67 yr old woman taking care of my adult disabled son at home in MD,I'm currently employed and he is under my insurance plan. What help is available for in home care or insurance ?

5 days ago

PhatNannie said...

2 days ago

Kort said...

10 days ago

Hi. Do you mind me asking what state you live in. I recently got my autistic 26 year old brother accepted for State funding which cover help and his day program. But I also have the option of full time home which would take care of him in the event I can't take care of him anymore. Every state has a list where he would be placed and can receive funding. Hope this helps. Your amazing for caring and helping this family.

Jehsr said...

9 days ago

Jehsr said...

11 days ago

I am trying to find what financial help is available to parents of a mentally challenged adult male. The parents are barely functional which just complicates the situation. The father is 63, has a heart condition and is not inclined to work. The mother, mid 50's has her hands full taking care of their son, who does collect SSI. The mother was a foster child and stayed with the foster family until the foster mother passed 2 years ago. Their living conditions are often times deplorable but my wife and I cannot constantly monitor their activities. We are both 70 and this family (no relation) is draining us both physically and financially. Any suggestions?

6 days ago

6 days ago

Steviesmom said...

21 days ago

I am Mom to a 31 year old handicapped male. He is 6'1" but has the mind of a 2 to 4 year old. He can walk (not run) can not write or read & loves to travel. I bathe, brush teeth, etc. He goes to a day program. The last year and a half he has been giving me problems with regards to waiting on things to happen that we are doing - getting very upset that it's all not happening now and also when things don't go just right, he has a lot of anxiety. For example, He'll ask me what we're doing tonight and when I answer eat dinenr he say's "And?" and he won't stop until I give him the response he wants. Usually I just have to lie (saying Kyle is coming over later) to just get him to settle down and stop. If I say no he's not coming, he gets very upset and just isn't good and takes an hour to get him calmed down. He has also the last few months been saying he wants to go live with boy. If he see guys his age when we are out and about he wants to go say hi to the boy. He wants to watch movies with boy, etc. He doesn't seem interested in other handicapped individuals. He has a helper at the day program who is a male (Kyle), and he just can't stop talking about him and wants to have him over, and go out to eat with him. This has become increasingly worse since Kyle is assisting him at the day program. I don't think it's because of Kyle I believe it's because he is wanting more peer interaction. I have a call into his case worker to talk to him about may moving him to a group home and peers so maybe that is the next chapter in our life. I'm just not sure it's the right path and I never thought I would not have him here with me caring for him. Anyone else struggle with placing their adult in a group home? I would sure like some feedback. Thanks.

Steviesmom said...

19 days ago

7 days ago

Missy xyz said...

22 days ago

What can a parent do, when your adult disabled child, is leaving in a group home and being told their rights are being violated as well as my parental rights? I've tried to talk to people in the local level, but have gotten nowhere. I know most rules and laws, since I had worked in mental health. But, everybody knows everybody and feel they are good people. Wrong!!!!

Suebaker said...

22 days ago

about 1 month ago

Help with schizophrenic adult son who refuses to apply for disability.

cara19117 said...

about 1 month ago

cara19117 said...

about 1 month ago

Hi. I'm a single-mom with a 29-year-old son with autism and bipolar. I have no family, and my ex wasn't involved. Because of my son's complex condition, we've moved 7 times and started 5 programs in our state over the years. My son is now in a group home doing ok, but I'm still involved in really difficult conversations with his agency. I just bought a small house in the county where my son resides. For the first time in 29 years, I have a "life" and time, but am really lonely. I am an extrovert, educated, and have lots of interests. I've put myself "out there" over and over (for 20+ years), but find I can't make a connection, in part because of my son and in part because I'm never in one place long enough. I can connect with people really well superficially, but have no real friends. I just ended a 7-year emotionally abusive relationship (prior to my last move) and my only "close friend" was the director of my son's programs, but that relationship is too "entangled" and isn't really a friendship. I've never posted any comments on a site like this. Thanks for listening.

marganit said...

about 1 month ago

Suebaker said...

about 1 month ago

sandiegomom57 said...

about 1 month ago

I'm a parent of a 25 year son. Are there any other parents in San Diego whose adult kids have no friends? I'm trying to figure out how to help my son find some friends. I'd like to start a support group for other parents who feel scared for their adult child's future. It's a lonely road isn't it?

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