Perhaps not politically correct though. I agree. Right now he's just a child. My daughter with Ohtahara Syndrome wouldâve faced a life of 24/7 dependent care, for however long she couldâve lived on a ventilator/feeding tube. I'm not strong enough. When he was released from the hospital, he came home on oxygen, a feeding tube, a physical therapy schedule, and so much medication that one of us was up with him every two hours. After the pain of even touching anyone finally subsided and the Pavlovian response from touching subsided which took longer. My wife more or less lives in fear that this deranged man will show up at our door one day and I can't say I don't believe her. r/AskReddit is the place to ask and answer thought-provoking questions. He does it in the MRI. It was the constant screaming, day and night. Best for him, best for us. They said she had absolutely no chance of living past 5 years old. ... “He has some type of brain disease, and I don’t … Consider doing an AMA request instead. Case in point: He's insanely strong, so we would ask him to help bring in groceries. And he responded "Yes. Heâs had episodes where his limbs felt like steel and he canât form words. I could barely handle one. Especially since we have a healthy son. Anyway...my son died when he was three months old. I need to be the last to die so I can watch over them. Damn. I do feel that some of my friends really take their parents for granted and don’t appreciate how much help they get. It caused him to not think he was hungry. As a diabetic, it's hard enough to manage with a normal brain. But experts and other parents say that needs to stop. We are not allowed on our own now??? I'm not a parent, but my second cousin (much older, in his 60's) and his wife have 4 daughters.Let's call the oldest K. K was born with very severe down syndrome, diabetes and as a celiac. My braindead daughter passed all of her prenatal screenings with flying colors and was even sent home from the hospital a healthy baby who passed her infant hearing test! He was starving himself as a baby. The ambulance arrived quickly, they tried. She does work, but spends all her money on vacations, … They are amazing. He had a shiny, floppy haircut with bangs that hung over his … He is a widow, and his daughter, age 25, lives with him and he financially supports her in every way. I really don't care if she's into animals now I just don't want her relying on my boyfriend for everything. This is why I'd want to abort. Probably late to the party, but it's my story to tell and sometimes I need to say it. It's not always ideal, but it works and it helps. I fear for his future. Nothing you did caused the death or would have prevented the death. It was fine for a long time, but this past year has been the absolute worst. I am a bot, and this action was performed automatically. I strongly suspect they will be stunningly attractive and people (men) will take advantage of them when they are older. I didn't want another child, I just wanted my son to be little again, he was already 12. Heâs had one since he was a baby and heâs now 9. Sorry. I'm not sure. I remember days where I was so tired that I'd function only during feeding and medication times. He'll be 30, then 40, then 60 barring any incidents that end his life earlier. Yet in many ways he'd just be a 2 year old. Out of control, really). Heâs so funny. The world is just ridiculously unfair. Sure, but this kid can sit there for an hour with nothing but his imagination. I dread to think what his life will be like. These were already good friends, but in those months, they became family. His little body has been wracked with pain so severe it has felt like everything is on fire. At 7, he started puberty. I can't help you. That's not a risk worth taking imo. I have three genetically inherited illnesses that are expensive to treat and have no cure. Just some days... fuck. We played duck duck goose." Society tells us how to think but they're not going through this hell. Had we gotten a more âgray areaâ diagnosis with at least some hope for some kind of life but severe disability, I wouldnât have been able to do it. Press J to jump to the feed. I don't have 1, I have 3. She's a fantastic little human, great fun, easy to deal with and compassionate as fuck. “My house is my own personal safe haven. Press question mark to learn the rest of the keyboard shortcuts. And then one day when he was about seven or eight, my aunt was driving him home one day and asked him, "Did you have a nice day at school?" With historic articles such as ‘I don’t want to be an autism mum anymore’ and ‘mourning a child I haven’t lost’, she will openly admit that her advocacy has been interpreted as anti-autism in the past. And lordy, I am not looking for advice. And on and on until he'd exhausted every possible option, but he'd have this sly, grinning smirk on his face each time he'd come back with a new hat. She has to have her blood tested several times a day, which means that one of her parents has to drive for 30 minutes to check it, then 45 minutes home. as the father of two autistic children, I feel your pain... people who have "normal" kids have no way of relating... they have no idea... one day at a time... Not a parent, but currently living with my aunt and my autistic cousin. Thank you. Maybe that makes me an awful person for even thinking that. What can I do to him that he hasnât already endured 1000x? She lived a total of sixteen days. After he was born, we spent a month going back and forth to the NICU in the hospital. It just goes to show that rare genetic disorders canât always be tested for or diagnosed accurately. No. Yes. I went a step further personally. Heâs now also very loving and huggy. But rare genetic syndromes can be extremely severe and basic prenatal tests donât pick them up unless you know what gene variant youâre looking for, and even then, thereâs no guarantee the baby wonât have something else wrong with it. Aside from his many doctors appointments, all across town, I was pretty much just around to care for him. New comments cannot be posted and votes cannot be cast. My main fear is that our autistic daughters will be very very beautiful. My husband knows infant cpr through his work. And the shock of it drove her into tears because she realized then that he understood and that he'd be all right in his own way. There are barely services in the rural south, and I don't have time or the time off to travel an hour+ one way to try and find a counselor for me. I don't have children yet and I am not sure if I ever will because I am very frightened that I might not be able to deal with it if they were disabled. And honestly, I'm surprised there hasn't been an "accident" with her medication or diet yet. Sure heâs not on chemo now, but it feels like itâs best to let it go now instead of when heâs on chemo. Find out what evidence you’ll need for the different claim types listed below. Would I do it again? But I also remember days where I was holding him and everything felt right, like this is exactly where I'm supposed to be right now. It takes a bit of extra planning but never has it stopped me from doing anything I want. Insurance is a nightmare. All she need's she has to call my boyfriend, it's like they are still together somehow and it makes me miserable. People love to hug and kiss my child with Down syndrome, and he is quick to reciprocate. I would call counselors in your area and see if you can find someone willing to do this. I couldn't do it. From what my aunt's told me, it was very difficult for the first few years. Like creditors are all, âyouâre credit score will go downâ, and Iâm like, âoh noesâ click. This depends on the type of claim you’re filing. I love them because they are of me. You were going through hell. Edit: thank you for the well wishes. And I'm not saying I could ever do something like that, but I bet the thought has crossed their minds. r/AskReddit is the place to ask and answer thought-provoking questions. 2 on disability and the 3rd isn't because we weren't able to get her to cooperate. She falls over on her face daily, has enough bruises on her body to bother any child protection worker and just gets up to keep going. Nobody in the house was getting sleep. Hell still fly into rages at times, but more often heâll hide if he doesnât want to do something. He hates walking, so he'd grab the biggest, furriest Russian hat he could find. We've worked with the child's attorney, local agencies that help abused kids, as well as a few other avenues that said they'd try to get it moving, however no dice. I used to be a very happy and positive person. Whatâs a little anger? I suspect when we die he'll have quite miserable life that this 2 year old will never understand. She gave up her job at 24, when K was born. I don't get why her diabetes is so out of control. Cookies help us deliver our Services. I’ve done backpacking solo trips, partied hard at concerts and festivals. In 2013, spending for community- and home-based services surpasse… Right now my cousin is 18 and has a job at the school. The only reason I haven't killed myself is because it doesn't feel right to put my responsibility on to someone else, and if I don't take care of them who will? No. I have a special needs child with autism, 12 years old. Every problem is swept away by this. People say get help… but there is no help (there is noone to look after him but us). I would tell any parent don’t allow your kid to fall into the trap because it does damage your self confidence and it … I don't have 1, I have 3. A movement swept the country in the 1970s and ’80s to deinstitutionalize people with disabilities. so what? I have a son who was born with multiple problems, no official name for what it was, but chief among them is a congenital heart defect. This is honestly the most humane way to do things. It's like looking at severe storm clouds on the horizon, but you keep telling yourself they may not arrive, though you know they will. It’s a manipulation tactic my mom uses, and I believe there are many other parents using it too.” — Vy N. I'll make it. - Natasha, 25 "Way too many couples think kids equal commitment. edit: Thank you all so much for your sympathy. Don't feel bad for the dogs. She never got a chance to live her own life because of K. Not in their wildest dreams did they expect her to live as long as she had.The mother is a wonderful, kind woman. Regret? Take away stuff? decides that your child’s disability is not severe enough for SSI, you won’t have to pay back the SSI payments that your child got. New comments cannot be posted and votes cannot be cast. Hang in there! Another parent here said that it has made her a stronger better person. Now is better. Just maintenance of the feeding tube was too much for me to handle, emotionally. Regret? If I could get into my time ship, I would avoid having this child. Wow! Hi Evan, I am a single mother of young children. This is a real challenge in my life, as I don’t have children, but my soon-to-be fiance does. I had a ton of friends who helped. The odds of this are astronomical, considering its a non-genetic disability. Some counselors are willing to do facetime or even over the phone. homeless) like a 30 year old when he's 30. I fear he will be treated like a worthless nuisance (e.g. This syndrome presents with no possibility of normal brain function from birth. And when I said that hat wouldn't work, he'd grab a yarmulke. It wouldâve torpedoed our lives and his. Now, having said that, he started improving around the time he turned four, and I don't have these thoughts any more. All people want is validation. What prevented me from doing this was thinking what the effect would be on his younger brother. Talk to your kids' doctors about caregivers support groups you can join ONLINE. We had two other kids at home, so we couldn't just move in like some other parents. Looks like you're using new Reddit on an old browser. Probably late to the party, but it's my story to tell and sometimes I need to say it. K is 43 this year and still requires full time care. While our state seems to take it seriously, his doesn't. If this was a relationship between two adults it would have been labeled as abuse. I waffle on that question. She and my uncle spent a TON of money on all these therapists for him to go to, and they had about a decade where money was extremely tight. Get out the throw-aways: dear parents of disabled children, do you regret having your child(ren) or are you happier with them in your life? My cousin refused to speak except in grunts and moans for ages, and when he finally began speaking he would just parrot back whatever you said to him. I'm sorry for your pain but don't feel bad about feeling relieved. I don't have children yet and I am not sure if I ever will because I am very frightened that I might not be able to deal with it if they were disabled. He has an implant similar to Norplant that keeps him from having puberty. Minding my disabled daughter: 'I don't want to do this any more' Women's writing for Women's Day: 32-year-old Siobhan Powell can't walk, speak or eat solid food. If my family, or society for that matter, rejects me because I don't conform to the life path they expect me to, then they're not people I care to associate with anyway." Itâs a slow growing one in his hypothalamus and as such canât be removed. By using our Services or clicking I agree, you agree to our use of cookies. "Nice day at school.") […] Read More I don't know what I was thinking. I feel devastated to have lost her but also extremely grateful that her prognosis was so severe. I hope youâre doing ok, man. The decision was basically made for us. I don't know if it will be covered by insurance but it is worth a shot! Weâre at a medically excellent institution. Edit: our xmas photo from last year - http://i.imgur.com/3Y7Bi.jpg their mother is half korean. Made a little aww noise right here at this part. My regular D&D group moved mountains for us. You may get lucky. My son has a brain tumor. I am currently in a relationship with a great man who has kids of his own. I'm learning so many new terms like Ohtahara Syndrome from this thread. My life is hell daily. It was too late because I was stuck in special Ed and they don’t want you to move up. My boyfriend thinks she can do anything because she is a lesbian so it doesn't matter. Nobody knows my son better than me, and the choices I make about how to care for him are no one’s business but my own. However, eventually he'll be 20, and society will no longer see an innocent child. Which was HUGE for my cousin because he'd never volunteered information before like that. It’s not because I don’t know of a positive thing he has done. We have a special good night kiss/tee tee nose/fist bump/super nova explosion with sound effects. Only in so much that I regret that I am their father and probably am responsible for fucking them on a genetic level. My daughter has an IEP that requires the use of graphic organizers for writing assignments. I feel like I am going to have a nervous breakdown. I'll be a rock. Maybe, another one later shrug. I now am isolated and depressed. - Oliver, 25. This generation of caregivers over 60 watched over decades as the U.S. grew more understanding and inclusive of people with disabilities. She expected to be back at work within 10 years. After your child starts receiving SSI, the law requires that we review your child’s medical condition from time to time to verify that his or her disability still meets our criteria. I’ve had it for 25 years and it has never, ever interfered with my life! She raised 3 other daughters, of which 1 was diabetic as well (she was also a huge problem child. I cry all of the time. She is dropped off and picked up by her parents every day she works. Like never going out to eat ever tight. Luckily, we live near one of the best childrenâs hospitals. I considered that he would be better off and so would I. After a few glasses, she broke down. A British surrogate mother says she will raise a disabled girl as her own after the baby’s intended mother said she didn’t want a ‘dribbling cabbage’ as her child. Parent comments that aren't from the target group will be removed, along with their child replies. I am surprised by how much even anonymous internet sympathy is affecting me. Thank you. There [are] so many things I just don’t … So, when other people tell me how they think I should be raising my child, I simply can’t tolerate it. She can deal with her kneecap dislocating on a near daily basis and shrug it off like theres nothing wrong. And for decades now, most people with disabilities who receive Medicaid help have been cared for at home by family members. We had no interest in keeping her body alive if there was no chance of consciousness. We don't even need a reason; we just don't want … I'm disabled." And he would look at us, decide it was too much work, and claim "No. Thanks for sharing your story :). However. I guess my point is that, at least from my limited perspective, having a disabled child is a huge struggle both emotionally and financially, but it can be rewarding in ways you wouldn't even think. I don't have the physical or emotional energy to parent another. I've never seen someone with so much love. So you are doing less administrative work for them? When he was formally … I cannot be more resilient than I am. Jokes, puns, and off-topic comments are not permitted in any comment, parent or child. All 3 are special needs. Unless you know what rare genetic abnormality youâre looking for, your basic NIPT test, amino, or CVS will only look for big chromosomal issues. As a mother, I put my parenting decisions above all else. What do you think redditors do? Thank you for sharing so honestly from this perspective. She upsets me every day. Please don’t look at it as a disability… My wife also has identical Mild Cerebral Palsy. Once you get over the fact that "Oh, right. He's autistic", you start getting a feel for how damn hilarious he is. My husband is not really very helpful but he tries to be supportive to me. God I am so sorry, dude. I will say, the night after my son died, I slept a full 10 hours of deep, uninterrupted sleep for the first time in three months, and it was the best sleep I've ever gotten. Unfortunately, they did not find the causative gene so thereâs nothing we can test for in future pregnancies. When Joe was born my sister helped a lot, as Robbie clearly hated the change to his routine with the arrival of the baby. He won't be able to live on his own because he won't exercise or eat vegetables unless prompted and can't drive and would sit inside all day flipping channels. If you haven't experienced that kind of torture, you have no idea how bad it can be. I would feel terrible passing on my conditions to my children. I canât punish him either. (i.e., "Did you have a nice day at school?" 2 on disability and the 3rd isn't because we weren't able to get her to cooperate. But in the end, well, there was just too much wrong with his little body. The dogs were relegated to living outside except when we were home, because they decided the oxygen line looked like something to chew on. She gave up her life when K was born. 9. When I was afraid to try something new, Lee was the first to say, “You can do it! I have never really talked about this with anyone; it's been a private thing between my wife and me. I decided to sterilize myself. Problems seem so insignificant faced with this. Upon hearing that, my husband and I decided to take her home from the NICU and let her pass with palliative care. Three? My family moved to a new state, they skipped me a grade and of course I was behind at first but I did catch up. I’ve spoken to some of the grandparents and they are exhausted! It needs to be replaced every year. I wasn't home. Iâm so sorry. My dilemma is that one of his children is special needs (autistic) and will likely never live independently, only possibly in a group home as a young adult in his 20s. All 3 are special needs. Roughly between when he was two and four, I would consider driving the two of us off a bridge, or some variation of this, daily. He's still severely disabled, he will never be able to take care of himself, but the situation is now merely sad and inconvenient, not utterly hellish like it was then. So in case tracking your kid’s device at all times is necessary, this is how you’ll prevent anything being changed or disabled. My daughter and I have one too itâs a kiss/kiss/butterfly kiss/finger waggle/hug for 30 seconds. She looked at me and said "I wish she'd just die already.". I don’t really expect my parents to help out, I kind of thought they might want to! Withhold affection? I didn't want another child, I just wanted my son to be little again, he was already 12. I don't think it's bad to be conflicted. Please contact the moderators of this subreddit if you have any questions or concerns. If I complain about something, it’s not because I have forgotten that I love my child. Thatâs the scariest thing. He tried. Sometimes, even after years, Iâll start crying at work. I don't know what I was thinking. Thanks for your cooperation and enjoy the discussion! I won't have another kid. Disability or not, I know the âok with not being bornâ feeling is very different from being suicidal, but still can be a shitty feeling. Then on the other hand we have reports of parents who have killed or seek to kill their disabled children simply because they don’t want to deal with them anymore. “We don't expect anybody else to do what we do for our child, so while we're still here, we want to try and have some peace of mind that everything will be OK,” Rubin says. Patients' advocate? In the past few months is the first heâs actually wanted to touch another human being for more than a couple seconds. As a child, I didn’t want to talk back to my mother because it was a disrespectful thing to do, but as I got older, I developed anxiety and depression due to the constant fear of getting in trouble. And I’ve traveled abroad. Now I am as you may of guessed married to a C.N who is the mother of my child, I am going to do all I can to minimise her taking any off this onto her … However, I do not regret my daughter in the slightest. They started coming over to watch the older kids, even learned the baby's schedule. I gave up my child to save my family Cassandra Jardine 10 March 2008 • 00:01 am Family fortunes: Julia Hollander put her disabled daughter, Imogen, into care when she found it … It is appreciated. Of which he does every 3-6 months. He won't be able to live on his own because he won't exercise or eat vegetables unless prompted and can't drive and would sit inside all day flipping channels if we'd let him among a host of other reasons, but out of all my cousins, he's the funniest one. Sure, it's not always this bad (as you can see in some of the replies here), but if it is it ruins your entire life. One adorable 2-year-old child came to see me for a speech consultation and the parents sat down on the floor and cried. What are your thoughts and experiences? I sat with her mother one night drinking wine, talking to her about it. Get mad at him? Notice to Veterans and service members of evidence needed: We’re required by law to tell you what evidence you’ll need to provide to support your disability claim. You ask if I regret it. I have a 4 year old with mild Cerebral Palsy. The father is a retired surgeon and the mother was a nurse. Another friend dragged me out shopping. Because all you have is this moment. We struggled in the beginning to "cure him", but it's clear he'll always have the mind of a 2 year old. The child, born with Congenital Myotonic Dystrophy, was one of twins the surrogate mother was … SSI disability reviews. She works at a factory that is specifically for down syndrome people. Heâs had to have 3 rounds of chemotherapy. Only in so much that I regret that I am their father and probably am responsible for fucking them on a genetic level. The site may not work properly if you don't, If you do not update your browser, we suggest you visit, Press J to jump to the feed. Getting the baby out of the house during that time was such a chore that I hardly left anymore. I don't know what to do. I don't want to live with her anymore. They have to measure every meal she eats with a measuring jug to check ensure she maintains a healthy diet and get up three times a night to check her blood.As is usual with down syndrome patients, the older she has gotten, the more difficult she is to deal with. Child neglect by parents can have a variety of insidious consequences. like she always did. I don’t want a pat on the shoulder and someone telling me to build up my resilience. Press question mark to learn the rest of the keyboard shortcuts. I was shocked to discover the changes this would bring to the man who loved and encouraged me to be my best. If I’m having a bad day and am venting, the last thing I want is advice and contradictions about what I am saying. I want to make sure that, as the public conversation about childfree women rolls on, we who have chosen the childfree life because of abuse and trauma don't get left behind, as … Report comments that violate these rules. I never leave my house, not because I don’t want to, but because ‘complex PTSD’ comes with friends like ‘agoraphobia’ and ‘panic disorder.’” — Melissa C. “My world has become so small. Posts that have few relevant answers within the first hour, and posts that are not appropriate for the [Serious] tag will be removed. Or when we were going to go for a walk through a park and it was sunny and about 85 degrees out, so I told him to bring a hat. I'm drowning even though they are no longer small kids. My son is severely autistic. He was perfect. Nope."
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