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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Hi, my name is Bridget. My daughter Jennifer is 33 years old. She was born with a chromosome 1 addition she is non verbal, non hearing, functioning level is maybe 2-3 years. She also has Severe Cardiomyopathy with an ejection fraction 10-13%. Baffles the cardiologist that she is still surviving. In March 2018 I called the house as I usually do once a week or so, and I heard her coughing. When asked why she had not been taken to the ER the caregiver stated she notified "on call nursing" 3 times. I called and gave them 30 minutes to get her to the ER. After x-rays done it showed fluid in her lungs. We brought her home for a two week visit. With in 7-10 days of her returning she had severe ear infections to the point her equilibrium was way off and she was falling, again I had to call the house to find out what the heck was going on that she is not getting proper medical treatment! A week following that, I receive a call from the Director of the facility stating that the aid that was working with the 3 clients walked out and left all three girls in the home alone. 1-Aid for 3 high level care clients!! My daughter and her 1 room mate of 20 years should have been on Intensive level care. (both girls are now on intense care.) I called the police because the company informed me "It was not there practice to inform the police) can you believe that statement! 2 days later her room mates father calls me, he was the one that showed up at the house and found the girls alone. That was on Friday June 15, 2018 on Sunday he informs me he placed a call to the house where the girls reside to inform them he would be stopping by to say good bye to his daughter and my daughter. He said a man answered the phone and stated he didn't know why he was in the girls home, he had no idea how to care for their needs, do gastrostomy feedings, or empty colostomy bags. The girls had not had there meds, had not been changed, not been fed and just running around the house. My daughter and roommate have since been moved to a very safe environment and beautiful home. Unfortunately this has taken a tole on Jennifers health as she again has fluid build up in her lungs and is coughing a bit. I want desperately to make some positive changes in the state of Idaho. All companies should be required by law to outsource their nursing needs, all companies in Idaho need to pay higher wages to the care givers, Care givers should not be allowed to work more that a 12 hour shift and no more than 6 days or 50-60 hours. All companies must provide shadow training, (not just computer training which is what the aids received to care for my daughter.) especially with medically fragile residents.. I am appalled and angry over the way my daughter and her roommates were neglected and mistreated. The company that was responsabile is one of the largest companies in Southern Idaho. I was naive and clueless (NO EXCUSE! ) I trusted for 7 years the care she was getting she had been with the same coordinator for 20 years who left the company when she left every thing went to hell in a hand bag so to speak. I'm sick over what happened to my daughter and her roommate who ended up in the ICU for 7 days because they did not properly take care of her stoma.
Thank you for letting me share a fraction of my story--- Bridget
Taylor's Mom said...
My son, Taylor, is 26 years old and still lives with me. He has severe autism but more challenging than that - he had a right hemispherectomy when he was 2 because grand mall seizures were literally killing him. At the Cleveland Clinic Taylor had the entire right side of his brain removed. It saved his life for sure......but he hasn't spoken a word since the surgery. Obviously he was only saying 2 year old words then but it was something. His fine motor skills were so affected that he is unable to manipulate small items and utensils. He requires total care......needs to be dressed, bathed, fed, and watched as if he were still a toddler. And.....he still has seizures - every day. I'm exhausted. I'm weary. I get up every single day to give my 6 ft son a shower, shave his face, wipe his nose - he cant wipe his own nose! I know that there are group homes out there.....I know. My heart cant do it. If he could communicate with me at all......understand the concept of what was happening......have even the most elementary conversation I think I might feel different. But he cant tell me anything. I dont know what to do anymore. I feel like I cant do this anymore but have no options. I love him so much but I have lost myself. Please. Does anyone have any thoughts?
about 2 months
I'm a single mom taking care of my adult daughter with CP. We recently had to move due to flooding in our old home. The new place is not set up at all for giving her a shower and for transfers. I am using a Hoyer lift and have to crawl on the floor to move things around in order to get her into the bathroom for toileting and showers.
Over the last couple of weeks I have tried to find someone who can help me set things up so I don't have to contort myself in order to take care of her. Most contractors don't have any sort of background in universal design or accessibility needs.
Has someone in the Orange County, California area had any positive experience with a bathroom remodel or lift system install for someone with special needs?
Any information would be much appreciated. Thank you.
about 2 months
I am the mother of a 35 year old daughter with an intellectual disability. She functions about at the level of a 6 year old. Her placement after my divorce is shared with her dad. She alternates one month with me and the next with her dad. I am a Florida resident; her dad lives in Wisconsin. She is currently a Florida resident and is on Florida Medwaiver. It is my wish to have her live full time in WI with her dad. I am looking for supports for my daughter in the Milwaukee area, particularly for those who are not on WI Medwaiver yet. The wait list is in the order of many years there. How do parents deal with the exorbitant costs of medical care and companion care in general ? Her dad has a large income and might not qualify if she is part of his household. Are there advocate groups who might help in navigating state or private financial resources?
My23 year old daughter on the autism spectrum has left with a guy she met on the internet and after a few days will not come back home. Will the police help in a situation like this
Hello, Parents of Disabled Adults.
I'm not exactly a parent of a disabled adult. I have a 21-year-old daughter of my own, but she lives independently. During my previous marriage, I was a stepfather to a boy with borderline intellectual disability, and I grew very attached...to both of my wife's boys. Now I am in a long-term relationship with someone whose daughter has a more severe intellectual disability. Her physical abilities are pretty normal except for one: She cannot speak intelligibly; she has severe speech apraxia; she can be understood sometimes, usually helped by familiarity and significant effort (on both sides). Her father lives in Hawaii and she rarely sees him, so I have, in essence, become her surrogate father. From the start, I have striven to advocate for her and to be involved in her IEP and other meetings. I even thought I would teach her sign language, but I don't know it myself and I found learning it in order to teach her while trying to focus on my own obligations--mainly, beginning graduate school--was just too difficult. I also tried to enlist the help of some education/speech professionals to get her an augmentative communication device she would use, but, although we were able to acquire an updated model, I don't think she's used it even once.
Despite her communicative and cognitive challenges, in some ways, she seems to thrive at school. I must qualify that statement because her mother and I have accompanied her to football games and the like, and she doesn't appear to have a lot of friends with whom she can socialize. Luckily, though, she's generally outgoing and upbeat, and she just seems to roll with it, sitting in the midst of a group, not talking to those around her but cheering along with the crowd, just the same. She certainly has the school spirit, though. She and her classmates often work the concession stand, and we've been repeatedly told she is an excellent worker.
However, her behavior at home is much different. She sometimes does what is asked of her, but not always. Sometimes she complains about having to carry her dirty dishes from the living room to the kitchen and putting them in the dishwasher. She has even refused to do so on at least one occasion. She also leaves behind a mess quite often. Her bathroom sink is never clean, she leaves the cap off the toothpaste with some oozing out the end and drying up. She drops things or leaves empty wrappers and used containers and does not pick them up. It's nearly impossible to step anywhere in her room without stepping on an article of clothing or some other item. Her mother and I have also tried to encourage her to do be more engaging and/or physical activities during the days she is not in school, like suggesting she walk with us--which she sometimes does--or run with me (to help her keep in shape for track (a sport for which she's found she has some preference and talent), and playing board games with her mother, her sister, and I, but most of the time she declines these requests and suggestions, opting for watching videos on her phone or TV instead.
Individually, of course, these are all trivial problems. But together they paint a picture that concerns me. She will be turning eighteen very soon, and she has acquired very few of the skills she will need to cope with adult life. She still cannot even tell time. When she is left at home alone, she calls her mom often for help or reassurance with seemingly little things. When the time is appropriate, her mother plans on getting her some sort of supervised/assisted living accommodations, but I still worry going out on her own will be a tremendous, even traumatic, shock for her. Might any of you have some suggestions for us as we try to help to better equip her with some of the tools (i.e., internal or external resources) she may and will need for adulthood?
My deepest thanks in advance.
I am stressing out so bad. please help me, how can you get FMLA covered when your child has to attend appts for his condition but is not medical related so the dr refuses. Such as SSI. While he was away for high school, me: mom before he could graduate high school I had to leave work to get his mess SSI overpayment straightened out, and go to his last IEP for his final year. My son is Deaf and cannot drive, he recently graduated highschool we live in sticks with no help or UBER.
Looking for advice on job searching. Have a bright son on the spectrum. Has his Masters in Business, & CPA.. pros & cons of disclosing disability? Thank you.
I'm looking for a family therapist to help my parents deal with my disabled brother. They have a very toxic relationship. My mom feels guilt and spends hours with him everyday, to the point where she & my dad have no life. They need to learn to separate from my brother. Any suggestions on what type of therapist to use?
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