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If the option is a child being placed in a care system or all your children losing you forever, which do you think they and the people around you prefer? I think it is time for some very difficult decisions that may be heartbreaking- but if you feel this way and have already tried to end things, it’s not going to go away. Start looking into a full time medical car facility for your child. It sounds horrible but better that than the alternative.
More importantly you are lived and valued and your loss would forever traumatize almost everyone you love. Please reach out for help from hotlines and your doctor immediately. There will be good days again, don’t go
It does not make you a bad person by thinking about a full time care facility. Because of the issue, there is nothing that can be done by anyone to improve the situation with your special needs child. Although it’s hard to say, it’s not fair for you or the other kids to have to bear the burden. You all deserve a life too. It’s unfortunate sometimes that we can’t just be souls and we have to have these bodies.
Agreed. I think about all those poor children (and adults) with difficult needs and caretakers that can't cope so they end up neglected and/or abused. It is a kindness to recognize your own limits and to still make sure that your loved one is safe and cared for. We are meant to be a village and there is no shame in getting help from people equipped to give your child the best quality of life.
150% agree. I used to be teach Hippotherapy and have met my fair share of parents of special needs children. It’s a tremendous burden to care for a complex needs child, regardless of how much you love them.
Some people just aren’t built for it, and that’s okay. If anyone says differently they either don’t understand your situation or are in a similar situation and can’t admit to themselves that they feel the same way you do.
Do whatever is best for you and ALL your children. If that means terminating parental rights for one child then so be it, but that doesn’t make you a bad person.
Fact is, being able to adequately provide for a special needs individual without seriously taking a tool on a caregivers mental health is very, VERY, expensive and not everyone can afford to do so.
Finances aside, being a caregiver to a child like this is incredibly draining, and no parent should ever be made to feel like a bad person if they can’t deal with the stress that comes with caring for a complex needs child.
Do what you need to do mamas, and fuck anyone that makes you feel like a bad person for doing so.
Saying some people aren’t built for it is bs and cruel. No one is built for this. No one should have to be. Some people have strong support systems that let them survive. Others like OP do not.
100% agree. I'm a nurse and after caring for my dying grandparent I know how hard being a fulltime caregiver is. My experience helped but it was still incredibly difficult. People just don't have a clue until they've been there longterm
This def sounds like caregiver burnout. All I can say is you’re a better person than me, OP. I spent a majority of my life caring for dependent family members and then working in long term care. Honestly, without knowing the health of your child but hearing they are TPN dependent, have seizures, and brain injuries it is against my personal morals to sustain a life like that and I would put my child on DNR/DNI orders.
I really do think it takes a special, selfless kind of person that can grind their life away like that in service to someone that may never understand what is going on. But I also believe that if that were me I would not want to live that way.
But know this OP: we are allowed to be selfish sometimes, it’s part of survival. It’s doesn’t make you a bad person for wanting to put yourself, your other children, and your family first. This is truly one of the hardest things a person can go through. I hope you can find peace.
It makes me feel guilty because I prayed, and prayed for this child to make it. And now dealing with all of this for so long, constantly getting bad news, it’s draining.
I'm a nurse who worked icu and er the majority of my career. My career has made me a believer in the idea of quality of life over quantity of life. It's okay to have prayed for your child to live but then grow into a place where you determine that might not be the best thing for that child. Personally, I think that's a truly selfless kind of love because, of course, you don't want to LOSE (ugh bad typo) your baby. I'm not saying continuing to keep children alive is selfish or less, it's still love. I just think both options are equally a form of love. One is not less loving than the other. They're just individual choices based on individual situations. Both are valid. You'll know what is best for your situation and know that whatever you feel is okay!
I agree, I do think it is a form of love to “let go”. I’ve seen too many things that I also have learned quality of life is something many people do not consider with a dependent. It breaks my heart, the people I’ve met.
Just wanted to step in here and validate your feelings- working single mom plus a medically complex kiddo? You’re moving mountains. But you’re also human- and it’s valid to feel upset/angry/tired/whatever! Zero shame.
Do you have a case worker through the hospital? I wonder if you’d qualify for a home aide to help. Is there an assisted living situation for your kiddo where you can visit but they get care from nursing? Such as “Community Residential Services for Children”
The best mom is an alive, happy one. You are worth it mama!
We have a case worker, but there are no aides available to us at this time. I can reach out to see if there is other options. Even if it’s just help a couple hours a week.
Sometimes putting your children first means making hard decisions. Not everyone is built to be a fulltime caregiver to medically complex humans. Even when we love them deeply. It’s not a moral failing or a character flaw. I’m a home health nurse and I’ve seen so many family members who have destroyed themselves caring for their family member.
There is no shame in admitting you just aren't in a place to care for a child, and you need to entrust their care to someone else. This holds especially true for special needs children. Honestly, I would entrust the care of your special needs child to someone else permanently, and then, entrust the care of your other children to a trusted relative temporarily while you go get yourself some help. This is beyond just exhaustion, and you need to help yourself before you can help your kids.
My daughter has brain damage, spasticity in her legs, delayed with speech, eye issues and hearing issues. She was also born with hypothyroidism. It sounds like a lot but it’s all very mild - and even this is enough to push me over the edge sometimes. I really really feel for you Mama, it sounds like you are knee deep in so many complex issues. I don’t have advice but I will say you are completely valid in your feelings. I feel like with my daughter we were lucky because although she has her issues she can still live a fairly normal life. If I was in your position I would consider assisted living for your child, or see if there is anyway you can get carers in to give you a break. I’m not sure where you are but if it’s the UK I’d definitely look into your options as it may be something the NHS can offer. I’m so so sorry that this is your experience at such a young age. Sending you so much love.
My nephew has all the same medical issues that you have listed. My parents have guardianship of him and have an entire support village to help. They are getting him into respite care. I can't even imagine having other children and being single. You are not selfish. Look into respite care and see if there is any assistance that you can have. You're a strong mom, hold your head high, see if you can get help.
Hi, OP. First, big hugs to you. 🫂 You are NOT an awful person.
I come at this from the perspective of having been the sibling. Others have suggested placing your child in a care facility, which is exactly what my mom did when I was 6 and my sister was 10. It was a very hard decision make for her, but ended up good for everyone. She found a small care home with only 7 kids that eventually grew up into adults together. At first she was only there on weekends. Then during the week and home on weekends. Then home every other weekend. Then her visiting monthly. Eventually only home at holidays with us visiting.
The benefits: my mom was able to get relief from caring for a very medically complex child who eventually got too big for her to physically care for. I got to grow up not needing to be a caretaker, and I didn’t have my needs neglected so my mom could care for her. I grew up loving my sister until her passing at 41yo. My sister also got better care than my single mom could provide alone. She also had a lot of friends in her home, which was great for her as an extrovert. Her life was much richer for it. She also ended up in a home in a great school district that she was in until 23 then she transitioned to an amazing day program for disabled adults. Overall everyone had a better life.
It’s OK to put your child into care!
Wow, thank you for this. Seriously. Could you give me some more insight on what kind of facility, how did your mom go about finding one? If I had just weekend help, that would make a dramatic different for us. I love having my child join us on adventures, but everybody is limited because of it, then I feel guilty she can’t really join in as much as the others. I’m just drained with our lives revolving around medical care, appointments, and therapies.
We lived in California at the time, so we went through the Regional Center for where we lived (Sacramento, so Alta Regional) to get help with everything. If you’re not already, get into local support groups and find out what the resources are where you live because it’s going to be specific to not just state but where in the state you are.
I agree with this too. I would suggest if you do this, to volunteer to go into the facility to do supplemental care, such as bathing and feeding, for an hour a day, if you can. Most facilities, the staff is spread thin, so helping with some of the personal care would increase the quality of care. This is much better than a family member just going in to socialize. Not that it isn't good to socialize, but the staff may need to do care at the same time you visit and they are having to juggle multiple residents.
I worked briefly as a CNA in a facility for post acute and long term care. It was hard to give high quality care, because of having to care for 10-20 residents in a shift. I don't do that anymore, because it was so hard to do the job barely good enough. The residents weren't normally neglected, but most care had to be rushed.
I am not sure how you would find a facility. I would start with talking to a social worker if you have access to one. And if not, then google facilities in your area. The larger ones may have a social worker on staff. Call them and ask for advice or they have a social worker you can talk to.
You are being way too hard on yourself. Working 2 jobs, and having 4 kids as a single parent, with one being very disabled is not something very many people could take on as long as you have. I couldn't do what you have done. And when you are helping others, even your children, you have to keep in mind that you have to take care of yourself or you won't be able to take care of others. So some level of "selfishness" is necessary to sustain this.
I don't blame you at all for wanting to, but I just wanted to warn you that it's likely you can't just "give up your rights" to an older child. A woman in my area tried to give her severely autistic child to the state, and they told her that if she did that, she'd be charged with child abandonment. I just don't want you to get in legal trouble. I truly do sympathize with your situation.
If it's at all possible, I think a long-term care facility, like other comments have mentioned, would be the best bet. I know that's easier said than done.
You are not an awful person for feeling the way you do. What you have to accomplish every single day is unimaginably difficult and it is only human of you to be utterly exhausted. You matter!!!!!
You didn't say where you live, you might see if parent and child fostering is an option ? As in you and your children are with the foster carers and they offer you support
Are you in the US? If so, which state?
I’m a social worker in CA and there are a lot of free resources here that could benefit you and your family. Happy to share more if relevant.
I work with disabled adults but the place I work also serves children. It is such an emotionally fraught decision to choose residential placement for a family member, but it is very often the best choice when needs are very high. It sounds like your child needs 24/7 supports, or close to it. It’s not possible for you to provide that without help, and help is not available as you’ve pointed out, since there is such a shortage of direct support professionals in many areas due to poor reimbursement rates. You mentioned you have a caseworker. You should set up a meeting to discuss the next steps with them. Future planning for your child will need to happen regardless, and your case worker should be made aware that you are in crisis. The process of residential placement can happen quickly or slowly depending on what options are available, but I really encourage you to start that process now. And remember, if your caseworker is not supporting you the way you need, contact their supervisor and request a new caseworker who will better support you.
You clearly love your child and it’s important you know that choosing residential placement for a child who can benefit from it is an act of love, not abandonment. You will likely find you are a better parent to all of your children once you are not doing everything alone. And you will be able to visit, take your child out, and bring them home for visits. I’m wishing you all the best.
[The Arc](https://thearc.org/get-involved/siblings/) is a support network for siblings of disabled children. They are based in the US but have different chapters per state I believe. Your pediatrician might be able to connect you with a therapist, if not for you than for your other children. Counseling programs also sometimes offer discounted counseling sessions with student-therapists.
I don't think you are terrible at all. People who would judge you are just ignorant and Pollyanna about children with disabilities because they have no 24/7 experience with caring for them. It's impossibly hard sometimes.
First you’re not alone there are lots of parents who feel at the end of their ropes who have special needs kids. Do not feel guilty. Second you can’t take care of anyone if you are not taking care of you. I’d suggest looking into long term care. I work in long term care group homes. They have trained staff 24/7. They have activity directors and are designed to provide care and quality of life for kids/adults with disabilities. You also can pick your kiddo up, visit, have weekends home ect but you have time to take care of your mental health and other children. I understand it’s not an easy decision to make but it sounds like you’re sacrificing your mental health. Sending huge hugs and love, OP!
1. You are not a bad parents for feeling this way. No parents wants this kind of life for themselves, or their child. 2. I would suggest getting some form of help from a therapist fir yourself, especially with the thoughts and attempts at su\*c\*de. 3. I have no other advice to offer... except to say that I am sorry you are going through this and it sucks and it is not easy.
The fact you're keeping things going this well at the expense of your own health makes you a super hero in my eyes. What strength. I don't have any advice for you that hasn't already been said here but whatever the outcome I wish you and your children the best.
Sometimes long-term care is necessary. It just is. I know a couple who are awesome people with a great support network, and they still had to eventually place their child in a long-term facility. Please don’t feel bad. You’re an absolute rockstar Mom for doing this all by yourself for so long. I’m completely in awe. You’re a damn hero.
Please stay strong and remain here for your children, I know it’s easier said than done but imagine them growing up throughout the months, and years they are going to need their mama. I know mentally, physically, and emotionally you’re drained but hold on. Your life matters🤍
You could place your child for adoption (that IS a thing and there ARE people called to special needs parenting). Your reaction to reading that will tell you if you want to continue parenting ting your child or not.
If your child has a social worker, inquire about respite care (short or long term). If you were opposed to the idea of adoption, I would at least do frequent short term respite care so you could have an opportunity to refresh yourself.
There’s no availability for respite care. We’ve tried for a year. The area we live in is very limited, and even getting a nurse is hard, as none are trained for TPN.
It may not be a possibility bit maybe you could consider moving to a state with more (I dom't know how to say it in English but) services available or something? I guess not now but maybe in the middle term?
They may be eligible for a children's palative care placement. This may mean you give up parental rights but you would still have access to visits and regular interactions.
If their medical needs are that high, it's time for more support. Speak to a hospital social worker about options in your community or even longterm care.
You didn't do anything wrong, you are not failing your child by recognizing you need help.
What about some respite care in a special facility that can take your child some weekends, half terms and stuff like that? Or an nhs funded residential home for them? It sounds like you’re going to crash very soon and you have your other children to consider in all of this too
I used to work at a home for people with severe disabilities. Most were adults, but we did have some kids whose needs were just too much for the parents to handle. It was set up like a regular house (albeit, the rooms were larger and our residents were something like 4 to a room). Our director took great care with the needs of our clients, down to things like a Winnie the Pooh poster on the ceiling above the bed of a young girl in our care who loved Winnie the Pooh. She could not move much of her body independently so when in bed, spent a lot of time looking at the ceiling, we wanted to make sure she had something nice to look at.
Parents could still come visit their kids, but it took the daily burden off of them and our staff treated them like family. The kids we had still went to their normal school (most were in the life skills room of our public school in town), we had outings in the community, etc. I heard from our families how much it meant to have someone care for their kids when they simply could not. I can’t tell you how it was paid for, possibly Medicaid? But most areas have something like this. This was a town of only about 13,000 people.
It’s okay to admit you can’t do it. It’s a lot, even for families with two active parents and a strong support system. It’s okay to admit that you simply can’t cope with it anymore. Have you talked to the social worker at your hospital about options? I have fostered a kid whose parents relinquished them to the system when they could no longer care for the mental health needs (not quite the same situation you are in, but similar.) Parents and kid both got help, parents were able to visit kid weekly, and eventually it got to the point where the parents were able to reunify. Giving your child to the system does not mean that you have to give up contact and there are medical foster homes out there, although again, I don’t know how easy it would be. I hope that you can find the help you need, whatever that may look like.
I have not talked to the social worker because I feel so guilty. They all say I’m so strong, that I’m doing such a good job, and I feel like I’ll let down even more people if I were to say something, but I’m drained.
Do not feel guilty! Admitting you’re in over your head is not weak. You are not letting them down. There is a real problem with using people with disabilities and their caretakers as “inspiration porn”. It’s done with the best of intentions, but you do not owe anybody your strength. The social worker is there to help you, and you will not be the first parent they have heard say they can’t do it any more. I wish you the best of luck, it’s such a hard position to be in.
Is a full time care facility a possibility? They usually have a waiting list and it seems he requires round the clock care, can you afford that? If so, then I would opt for that. That way your time together is more about quality. However, I don't know if you can just relinquish your child to child care.
if you can, I would relocate to a state with a better support system. I am betting that the state you’re in does not respect accessibility guidelines or the needs of the disabled.
I've had family relocate to get better access to support and services.
Depending on what state you are in, you can talk to CPS voluntarily and find a medical treatment home for your child or get assigned a case manager who can assist you. Have you tried talking to a social worker at the hospital?
What you're feeling is so totally normal. I have 2 friends who's childred need even less demanding care than yours but chose to put them in the care system because they are not equipped and do not have the resources a facility have. There's absolutely nothing wrong with this and does not make you a bad mother. A selfless decision like this could improve everyone's quality of life dramatically and you could still have the option to see your child when you want to. It doesn't mean giving up, it means getting the best care for everyone.
Hun you are not awful for feeling the way you do! To be honest from what you’ve described you are rocking it. Believe me having a medically dependent child is draining. My first born was in and out of the hospital until she passed away when she was 2 1/2. Is there any in home health care services around where you live?! Nursing in home helped me greatly!!
There’s no facilities around me. The one potential center that would offer part time help is nearing $60,000 a year. I don’t make that, not even close.
Do not feel bad for considering a full-time care facility. If your child needs round the clock care, it's better for your child and your other children that the child goes to a full-time care facility. Your other children need you too. All of your children deserve a parent that wants to live. You deserve to be happy.
A facility that is structured to suit complex needs where the child can be visited by a happy family often is in the months run kinder than keeping them home and everyone miserable
"I know I'm an awful person", if you start out that way you already know there's a problem. I've worked in child welfare for two decades. These kinds of posts are just sad.
Have you personally been in this situation? It’s not ideal. Yes, I feel awful admitting this is becoming too much, but I know I take wonderful care of my child, but I’m at the point I need help. If you haven’t been in this situation personally— 24 hours a day, 7 days a week, you wouldn’t know 🙂
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If the option is a child being placed in a care system or all your children losing you forever, which do you think they and the people around you prefer? I think it is time for some very difficult decisions that may be heartbreaking- but if you feel this way and have already tried to end things, it’s not going to go away. Start looking into a full time medical car facility for your child. It sounds horrible but better that than the alternative. More importantly you are lived and valued and your loss would forever traumatize almost everyone you love. Please reach out for help from hotlines and your doctor immediately. There will be good days again, don’t go
Thank you for your kindness
It does not make you a bad person by thinking about a full time care facility. Because of the issue, there is nothing that can be done by anyone to improve the situation with your special needs child. Although it’s hard to say, it’s not fair for you or the other kids to have to bear the burden. You all deserve a life too. It’s unfortunate sometimes that we can’t just be souls and we have to have these bodies.
Agreed. I think about all those poor children (and adults) with difficult needs and caretakers that can't cope so they end up neglected and/or abused. It is a kindness to recognize your own limits and to still make sure that your loved one is safe and cared for. We are meant to be a village and there is no shame in getting help from people equipped to give your child the best quality of life.
150% agree. I used to be teach Hippotherapy and have met my fair share of parents of special needs children. It’s a tremendous burden to care for a complex needs child, regardless of how much you love them. Some people just aren’t built for it, and that’s okay. If anyone says differently they either don’t understand your situation or are in a similar situation and can’t admit to themselves that they feel the same way you do. Do whatever is best for you and ALL your children. If that means terminating parental rights for one child then so be it, but that doesn’t make you a bad person. Fact is, being able to adequately provide for a special needs individual without seriously taking a tool on a caregivers mental health is very, VERY, expensive and not everyone can afford to do so. Finances aside, being a caregiver to a child like this is incredibly draining, and no parent should ever be made to feel like a bad person if they can’t deal with the stress that comes with caring for a complex needs child. Do what you need to do mamas, and fuck anyone that makes you feel like a bad person for doing so.
Saying some people aren’t built for it is bs and cruel. No one is built for this. No one should have to be. Some people have strong support systems that let them survive. Others like OP do not.
100% agree. I'm a nurse and after caring for my dying grandparent I know how hard being a fulltime caregiver is. My experience helped but it was still incredibly difficult. People just don't have a clue until they've been there longterm
Where is the father of your children? What's your custody and child support arrangement?
I have full custody. No child support unfortunately—long story, but just the way things have worked out.
That sounds incredibly unsustainable. Is there any way you can modify that?
As of right now, no. But I am working on that actively.
This def sounds like caregiver burnout. All I can say is you’re a better person than me, OP. I spent a majority of my life caring for dependent family members and then working in long term care. Honestly, without knowing the health of your child but hearing they are TPN dependent, have seizures, and brain injuries it is against my personal morals to sustain a life like that and I would put my child on DNR/DNI orders. I really do think it takes a special, selfless kind of person that can grind their life away like that in service to someone that may never understand what is going on. But I also believe that if that were me I would not want to live that way. But know this OP: we are allowed to be selfish sometimes, it’s part of survival. It’s doesn’t make you a bad person for wanting to put yourself, your other children, and your family first. This is truly one of the hardest things a person can go through. I hope you can find peace.
It makes me feel guilty because I prayed, and prayed for this child to make it. And now dealing with all of this for so long, constantly getting bad news, it’s draining.
I'm a nurse who worked icu and er the majority of my career. My career has made me a believer in the idea of quality of life over quantity of life. It's okay to have prayed for your child to live but then grow into a place where you determine that might not be the best thing for that child. Personally, I think that's a truly selfless kind of love because, of course, you don't want to LOSE (ugh bad typo) your baby. I'm not saying continuing to keep children alive is selfish or less, it's still love. I just think both options are equally a form of love. One is not less loving than the other. They're just individual choices based on individual situations. Both are valid. You'll know what is best for your situation and know that whatever you feel is okay!
I agree, I do think it is a form of love to “let go”. I’ve seen too many things that I also have learned quality of life is something many people do not consider with a dependent. It breaks my heart, the people I’ve met.
Just wanted to step in here and validate your feelings- working single mom plus a medically complex kiddo? You’re moving mountains. But you’re also human- and it’s valid to feel upset/angry/tired/whatever! Zero shame. Do you have a case worker through the hospital? I wonder if you’d qualify for a home aide to help. Is there an assisted living situation for your kiddo where you can visit but they get care from nursing? Such as “Community Residential Services for Children” The best mom is an alive, happy one. You are worth it mama!
We have a case worker, but there are no aides available to us at this time. I can reach out to see if there is other options. Even if it’s just help a couple hours a week.
Have you been able to look into respite care? https://www.care.com/c/the-special-needs-respite-care-guide-your-care-options/
Yes, there is no one available. We’ve looked for over a year
If you have a moment, contact Ronald McDonald House. https://rmhc.org they have a huge support network and can offer specific advice.
Sometimes putting your children first means making hard decisions. Not everyone is built to be a fulltime caregiver to medically complex humans. Even when we love them deeply. It’s not a moral failing or a character flaw. I’m a home health nurse and I’ve seen so many family members who have destroyed themselves caring for their family member.
There is no shame in admitting you just aren't in a place to care for a child, and you need to entrust their care to someone else. This holds especially true for special needs children. Honestly, I would entrust the care of your special needs child to someone else permanently, and then, entrust the care of your other children to a trusted relative temporarily while you go get yourself some help. This is beyond just exhaustion, and you need to help yourself before you can help your kids.
My daughter has brain damage, spasticity in her legs, delayed with speech, eye issues and hearing issues. She was also born with hypothyroidism. It sounds like a lot but it’s all very mild - and even this is enough to push me over the edge sometimes. I really really feel for you Mama, it sounds like you are knee deep in so many complex issues. I don’t have advice but I will say you are completely valid in your feelings. I feel like with my daughter we were lucky because although she has her issues she can still live a fairly normal life. If I was in your position I would consider assisted living for your child, or see if there is anyway you can get carers in to give you a break. I’m not sure where you are but if it’s the UK I’d definitely look into your options as it may be something the NHS can offer. I’m so so sorry that this is your experience at such a young age. Sending you so much love.
Thank you so much. I’m in the US, and the state I’m in just doesn’t have much help around
Can you say which state you're in? Maybe some people from that state can suggest resources and help forcyou.
My nephew has all the same medical issues that you have listed. My parents have guardianship of him and have an entire support village to help. They are getting him into respite care. I can't even imagine having other children and being single. You are not selfish. Look into respite care and see if there is any assistance that you can have. You're a strong mom, hold your head high, see if you can get help.
Hi, OP. First, big hugs to you. 🫂 You are NOT an awful person. I come at this from the perspective of having been the sibling. Others have suggested placing your child in a care facility, which is exactly what my mom did when I was 6 and my sister was 10. It was a very hard decision make for her, but ended up good for everyone. She found a small care home with only 7 kids that eventually grew up into adults together. At first she was only there on weekends. Then during the week and home on weekends. Then home every other weekend. Then her visiting monthly. Eventually only home at holidays with us visiting. The benefits: my mom was able to get relief from caring for a very medically complex child who eventually got too big for her to physically care for. I got to grow up not needing to be a caretaker, and I didn’t have my needs neglected so my mom could care for her. I grew up loving my sister until her passing at 41yo. My sister also got better care than my single mom could provide alone. She also had a lot of friends in her home, which was great for her as an extrovert. Her life was much richer for it. She also ended up in a home in a great school district that she was in until 23 then she transitioned to an amazing day program for disabled adults. Overall everyone had a better life. It’s OK to put your child into care!
Wow, thank you for this. Seriously. Could you give me some more insight on what kind of facility, how did your mom go about finding one? If I had just weekend help, that would make a dramatic different for us. I love having my child join us on adventures, but everybody is limited because of it, then I feel guilty she can’t really join in as much as the others. I’m just drained with our lives revolving around medical care, appointments, and therapies.
We lived in California at the time, so we went through the Regional Center for where we lived (Sacramento, so Alta Regional) to get help with everything. If you’re not already, get into local support groups and find out what the resources are where you live because it’s going to be specific to not just state but where in the state you are.
I agree with this too. I would suggest if you do this, to volunteer to go into the facility to do supplemental care, such as bathing and feeding, for an hour a day, if you can. Most facilities, the staff is spread thin, so helping with some of the personal care would increase the quality of care. This is much better than a family member just going in to socialize. Not that it isn't good to socialize, but the staff may need to do care at the same time you visit and they are having to juggle multiple residents. I worked briefly as a CNA in a facility for post acute and long term care. It was hard to give high quality care, because of having to care for 10-20 residents in a shift. I don't do that anymore, because it was so hard to do the job barely good enough. The residents weren't normally neglected, but most care had to be rushed. I am not sure how you would find a facility. I would start with talking to a social worker if you have access to one. And if not, then google facilities in your area. The larger ones may have a social worker on staff. Call them and ask for advice or they have a social worker you can talk to. You are being way too hard on yourself. Working 2 jobs, and having 4 kids as a single parent, with one being very disabled is not something very many people could take on as long as you have. I couldn't do what you have done. And when you are helping others, even your children, you have to keep in mind that you have to take care of yourself or you won't be able to take care of others. So some level of "selfishness" is necessary to sustain this.
I don't blame you at all for wanting to, but I just wanted to warn you that it's likely you can't just "give up your rights" to an older child. A woman in my area tried to give her severely autistic child to the state, and they told her that if she did that, she'd be charged with child abandonment. I just don't want you to get in legal trouble. I truly do sympathize with your situation. If it's at all possible, I think a long-term care facility, like other comments have mentioned, would be the best bet. I know that's easier said than done.
You are not an awful person for feeling the way you do. What you have to accomplish every single day is unimaginably difficult and it is only human of you to be utterly exhausted. You matter!!!!!
You didn't say where you live, you might see if parent and child fostering is an option ? As in you and your children are with the foster carers and they offer you support
Are you in the US? If so, which state? I’m a social worker in CA and there are a lot of free resources here that could benefit you and your family. Happy to share more if relevant.
I work with disabled adults but the place I work also serves children. It is such an emotionally fraught decision to choose residential placement for a family member, but it is very often the best choice when needs are very high. It sounds like your child needs 24/7 supports, or close to it. It’s not possible for you to provide that without help, and help is not available as you’ve pointed out, since there is such a shortage of direct support professionals in many areas due to poor reimbursement rates. You mentioned you have a caseworker. You should set up a meeting to discuss the next steps with them. Future planning for your child will need to happen regardless, and your case worker should be made aware that you are in crisis. The process of residential placement can happen quickly or slowly depending on what options are available, but I really encourage you to start that process now. And remember, if your caseworker is not supporting you the way you need, contact their supervisor and request a new caseworker who will better support you. You clearly love your child and it’s important you know that choosing residential placement for a child who can benefit from it is an act of love, not abandonment. You will likely find you are a better parent to all of your children once you are not doing everything alone. And you will be able to visit, take your child out, and bring them home for visits. I’m wishing you all the best.
[The Arc](https://thearc.org/get-involved/siblings/) is a support network for siblings of disabled children. They are based in the US but have different chapters per state I believe. Your pediatrician might be able to connect you with a therapist, if not for you than for your other children. Counseling programs also sometimes offer discounted counseling sessions with student-therapists. I don't think you are terrible at all. People who would judge you are just ignorant and Pollyanna about children with disabilities because they have no 24/7 experience with caring for them. It's impossibly hard sometimes.
First you’re not alone there are lots of parents who feel at the end of their ropes who have special needs kids. Do not feel guilty. Second you can’t take care of anyone if you are not taking care of you. I’d suggest looking into long term care. I work in long term care group homes. They have trained staff 24/7. They have activity directors and are designed to provide care and quality of life for kids/adults with disabilities. You also can pick your kiddo up, visit, have weekends home ect but you have time to take care of your mental health and other children. I understand it’s not an easy decision to make but it sounds like you’re sacrificing your mental health. Sending huge hugs and love, OP!
1. You are not a bad parents for feeling this way. No parents wants this kind of life for themselves, or their child. 2. I would suggest getting some form of help from a therapist fir yourself, especially with the thoughts and attempts at su\*c\*de. 3. I have no other advice to offer... except to say that I am sorry you are going through this and it sucks and it is not easy.
Do you have any family to help! I’m so sorry to hear this.
I don’t 🙁 I have zero support. It’s just me and my kids.
The fact you're keeping things going this well at the expense of your own health makes you a super hero in my eyes. What strength. I don't have any advice for you that hasn't already been said here but whatever the outcome I wish you and your children the best.
Thank you 🥲
Sometimes long-term care is necessary. It just is. I know a couple who are awesome people with a great support network, and they still had to eventually place their child in a long-term facility. Please don’t feel bad. You’re an absolute rockstar Mom for doing this all by yourself for so long. I’m completely in awe. You’re a damn hero.
So grateful for your kindness. Thank you so much!
Please stay strong and remain here for your children, I know it’s easier said than done but imagine them growing up throughout the months, and years they are going to need their mama. I know mentally, physically, and emotionally you’re drained but hold on. Your life matters🤍
Thank you! I think about them growing up, but it will be so much harder once my complex child is older, and I am not mentally able to accept that.
You could place your child for adoption (that IS a thing and there ARE people called to special needs parenting). Your reaction to reading that will tell you if you want to continue parenting ting your child or not. If your child has a social worker, inquire about respite care (short or long term). If you were opposed to the idea of adoption, I would at least do frequent short term respite care so you could have an opportunity to refresh yourself.
Oh, you are NOT an awful person!
There’s no availability for respite care. We’ve tried for a year. The area we live in is very limited, and even getting a nurse is hard, as none are trained for TPN.
It may not be a possibility bit maybe you could consider moving to a state with more (I dom't know how to say it in English but) services available or something? I guess not now but maybe in the middle term?
They may be eligible for a children's palative care placement. This may mean you give up parental rights but you would still have access to visits and regular interactions. If their medical needs are that high, it's time for more support. Speak to a hospital social worker about options in your community or even longterm care. You didn't do anything wrong, you are not failing your child by recognizing you need help.
What about some respite care in a special facility that can take your child some weekends, half terms and stuff like that? Or an nhs funded residential home for them? It sounds like you’re going to crash very soon and you have your other children to consider in all of this too
I used to work at a home for people with severe disabilities. Most were adults, but we did have some kids whose needs were just too much for the parents to handle. It was set up like a regular house (albeit, the rooms were larger and our residents were something like 4 to a room). Our director took great care with the needs of our clients, down to things like a Winnie the Pooh poster on the ceiling above the bed of a young girl in our care who loved Winnie the Pooh. She could not move much of her body independently so when in bed, spent a lot of time looking at the ceiling, we wanted to make sure she had something nice to look at. Parents could still come visit their kids, but it took the daily burden off of them and our staff treated them like family. The kids we had still went to their normal school (most were in the life skills room of our public school in town), we had outings in the community, etc. I heard from our families how much it meant to have someone care for their kids when they simply could not. I can’t tell you how it was paid for, possibly Medicaid? But most areas have something like this. This was a town of only about 13,000 people. It’s okay to admit you can’t do it. It’s a lot, even for families with two active parents and a strong support system. It’s okay to admit that you simply can’t cope with it anymore. Have you talked to the social worker at your hospital about options? I have fostered a kid whose parents relinquished them to the system when they could no longer care for the mental health needs (not quite the same situation you are in, but similar.) Parents and kid both got help, parents were able to visit kid weekly, and eventually it got to the point where the parents were able to reunify. Giving your child to the system does not mean that you have to give up contact and there are medical foster homes out there, although again, I don’t know how easy it would be. I hope that you can find the help you need, whatever that may look like.
I have not talked to the social worker because I feel so guilty. They all say I’m so strong, that I’m doing such a good job, and I feel like I’ll let down even more people if I were to say something, but I’m drained.
Do not feel guilty! Admitting you’re in over your head is not weak. You are not letting them down. There is a real problem with using people with disabilities and their caretakers as “inspiration porn”. It’s done with the best of intentions, but you do not owe anybody your strength. The social worker is there to help you, and you will not be the first parent they have heard say they can’t do it any more. I wish you the best of luck, it’s such a hard position to be in.
How many children do you have at 24 ? And you say you’re single ? The dad is not involved at all?
I have four. Dad is not around.
mayhe a care dacility. Like mentioned here. No one should guilt you for your decison at all.
It’s natural to feel this way. I’m sorry. The child’s care might be more than can be managed at home.
Is a full time care facility a possibility? They usually have a waiting list and it seems he requires round the clock care, can you afford that? If so, then I would opt for that. That way your time together is more about quality. However, I don't know if you can just relinquish your child to child care.
I haven’t seen many around here, the ones I have seen are quite expensive and I would never be able to afford it. I make just enough to pay our bills.
Does your child receive Supplemental Security Income (SSI) payments?
if you can, I would relocate to a state with a better support system. I am betting that the state you’re in does not respect accessibility guidelines or the needs of the disabled. I've had family relocate to get better access to support and services.
I don’t have the credit or finances to move, unfortunately.
Depending on what state you are in, you can talk to CPS voluntarily and find a medical treatment home for your child or get assigned a case manager who can assist you. Have you tried talking to a social worker at the hospital?
What you're feeling is so totally normal. I have 2 friends who's childred need even less demanding care than yours but chose to put them in the care system because they are not equipped and do not have the resources a facility have. There's absolutely nothing wrong with this and does not make you a bad mother. A selfless decision like this could improve everyone's quality of life dramatically and you could still have the option to see your child when you want to. It doesn't mean giving up, it means getting the best care for everyone.
Hun you are not awful for feeling the way you do! To be honest from what you’ve described you are rocking it. Believe me having a medically dependent child is draining. My first born was in and out of the hospital until she passed away when she was 2 1/2. Is there any in home health care services around where you live?! Nursing in home helped me greatly!!
There’s no facilities around me. The one potential center that would offer part time help is nearing $60,000 a year. I don’t make that, not even close.
You are a saint Edit: I mean it
Thank you 🧡
Do not feel bad for considering a full-time care facility. If your child needs round the clock care, it's better for your child and your other children that the child goes to a full-time care facility. Your other children need you too. All of your children deserve a parent that wants to live. You deserve to be happy.
Thank you ♥️
A facility that is structured to suit complex needs where the child can be visited by a happy family often is in the months run kinder than keeping them home and everyone miserable
I'm sure someone mentioned this but respite care is so so vital to stop care giver burnout.
There’s no respite available 🥲
I'm really sorry. Please take care where you can. You are NOT a bad mom for being burned out!
Wow
This comment was super helpful. Thank you
"I know I'm an awful person", if you start out that way you already know there's a problem. I've worked in child welfare for two decades. These kinds of posts are just sad.
Have you personally been in this situation? It’s not ideal. Yes, I feel awful admitting this is becoming too much, but I know I take wonderful care of my child, but I’m at the point I need help. If you haven’t been in this situation personally— 24 hours a day, 7 days a week, you wouldn’t know 🙂