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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What's New Today
13 days ago
Hello. We have a 22 year old daughter with TBI. She is not "normal" but her disabilities are not visible or debilitating to the point that society classifies her as "disabled". She us struggling to find her place in the world and we are struggling with the right ways to support her. Is anyone else facing similar issues?
19 days ago
I have a son turning 21 who is not making it.i realize now that he was diagnosed emh in school and left at 16.he has no diploma or job and no housing.he can't do everything other young guys can.i guess I thought he could.now he needs my help and I'm looking for resources and information for him.I pray someone replies with their knowledge and experience!
23 days ago
I am a sixty four year old mom to a forty one year old son who has hydrocephalus and many other disabilities. My husband left 11 years ago and does not provide any financial or emotional support even though he lives in the same town as us. My son still lives at home. I am beginning to consider transitioning him to residential care but he doesn't want to move so it would be a situation I force. I am having much guilt even though everyone is telling me it is time to make the transition. I am looking for advice f I'm others who have been where I am. I do have legal guardianship. Thanks.
about 1 month ago
Im the mother of a 21yr old girl who is currently living at home but she is transitioning into supported living moving in a house with another disabled woman the problem is the care agency and my daughter's social worker . Seem to be shutting me out of my daughter's life saying I will have to make appointment to visit her they do not want my opinion on anything and went so far as to ask me to wait upstairs while 7 other peaple had a meeting with my daughter I was told im a negative person who makes peaple anxious this is all after they treated us like crap for months they are now rushing my daughter to move in but I know by the way they are treating me now is onl a taste of the future I feel trapped as im disabled myself so needed help with my daughter's care not somone else to take over and stone wall me out of her life I don't know what to do I cant bear not to be involved in my daughter's life please help with any advice for my situation .
about 1 month ago
I am a single parent of an adult son (24 years old) with Cerebral Palsy. His disability is limited to a physical one, but his care is consuming. My ex-husband provides no support in any way. I have not had a vacation in years. I am unable to work outside of his care. I struggle with guilt for feeling trapped, but would never consider placing him in another care situation. My community has no support groups for someone like me. I find myself very lonely and afraid I will be alone the rest of my life. Looking for advice in how to balance life better, so I am not consumed with loneliness and guilt.
Mary Frerz Rizzo said...
about 1 month ago
Soo very upset received a bill from a dentist for my son, who is blind with neuro vascular disease for 3,950.00 $150.00 of it is for behavior Mangmbt, my son was good as gold at last appt. is it legal to future bill someone in anticipation of a meltdown or behavior
2 months ago
I'm a single mom of one (An adult cognitive impaired son). 2yrs ago I was taken to court, Accused of elder abuse and neglect, but never criminally charged. My visits are restricted to 1hr, once a week, supervised. I've been fighting for unsupervised visits (more often, and longer than an hour a week) for 2yrs, not having any luck. I need legal representation but can't afford to hire an attorney. I am at wits end and don't know where to turn. Any suggestions that might be helpful to me would be greatly appreciated. Thanks for taking the time to read my story.
2 months ago
trying to get some support....I am recently divorced and caring for my 20 year old son with ID. This morning he became very violent and attacked my daughter (23) in our home because he did not want to do what was asked of him. She had to be seen by a doctor for injuries sustained.
I don't know what to do with him. He cannot live on his own, and he refuses to go live in a group home - now I am not sure anyone would take him anyway. Are there support groups for parents like me? Is this one of them? I live in Oklahoma and don't have a lot of resources. He gets a little SSI, but that is all. He has been on the DDS waitlist since 2006. Any advice is appreciated!
2 months 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!
2 months 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!!
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