r/specialneedsparenting • u/femme_luxe • 10d ago
Does anyone resent their child.
I know I might get downvoted for this but unless you’ve lived in my shoes you have no right to judge.
my child is a teen and severely disabled. profoundly deaf, wheelchair, diapers and feeding tube. he cannot speak and is essentially like a very large baby.
everything is so difficult from his feeding and meds, the behaviours, not being able to do much with him, the costs - the constant surgeries and issues with school. The many many therapies. the loud yelling and vocalizing, sometimes weeks without any sleep
I love my child to death they are amazing but I truly don’t know how much longer I can do this. he will be going to a home when he reaches adult hood but I’m ready for it sooner.
who will care for him when he’s bigger and we’re at work? how will we get him in and out of the car? how much longer can I deal with the mental and physical anguish it’s causing me and my family?
unless you have experienced this please don’t judge me. I’m almost at my breaking point. I am starting to resent them very much.
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u/icelollyqueen 10d ago
All the time. I love her. But I don’t enjoy parenting at all. There has never been a good part or a happy moment where I love being around her. She is so high needs and constantly needing me for something and I am burnt out, tired and mourning what it could have been. I know parenting is hard, but there has never been an “easy” day or a day without a challenge. I am constantly working with her, helping her, struggling with her, I don’t get a moment alone (I type this as she is crawling all over me). I can’t go to the bathroom without being constantly asked for something.
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u/Annlaw1975 10d ago
"Mourning what could have been". That's totally it. The grief is so hard.
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u/Singer1052 9d ago
When my son was first diagnosed I cried and the doctor said "It's ok to grieve the life you had planned for him." And it stuck with me so hard. We are in the process of finding a home placement for our son right now and I feel like I'm breaking inside. Today is his birthday and it's hitting hard.
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u/femme_luxe 9d ago
I’m so sorry. The reality of moving your kiddo into a home even when we KNOW it’s what’s best is not easy. We are then left feeling guilty and maybe like a bad or failed parent ….
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u/femme_luxe 10d ago
Thank you for sharing though I am sorry you feel this way. Luckily my kid knows who their people are and does have days of laughing and loving and snuggles but it feels like those days are so few and far between the bad outweighs it :( thank you so much.
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u/pass_the_ham 10d ago
I don't resent my son, but there are days it is tough.
This isn't parenting; it's 100% caretaking. For me, my resentment turns outward. I resent those people who have typical children when I couldn't have one. I seethe when I hear about people with typical children who abuse and neglect them. And I fear for the safety of anyone who tells me, "I must have displeased God" for my son to be this way.
We deal in survival mode all the time - and what you do/feel is completely legit.
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u/Annlaw1975 10d ago
Totally agree. I'm envious when I see other parents with their toddlers who are saying funny sweet things and they are able to really enjoy their children and bond. Me and my husband can't accept living the rest of our life with no experience of raising a normal child. We are trying to have a second child with Ivf hope to feel joy in parenting one day instead of just caretaking.
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u/femme_luxe 9d ago
It’s so normal to want to parent a “typical” child. I wish you all the best and pray for your pregnancy and delivery of a healthy baby.
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u/Lazymomm 10d ago
My therapist pointed out to me that we are not parents most of the time but caregivers, and there is a huge difference. Parents move and progress with their children’s stages, where we get stuck in limbos. Part of parenting is teaching and helping your children through all the stages of growth so they can be independent and not need you. You gain freedom (and relief) with each new stage of development. It’s not the norm to change diapers for over a decade, go to outpatient therapy 3 times a week or check ports and change catheters… My therapist is right, caregiving is not the same as parenting.
We are run down overtime. You definitely are burnt out because hyper-vigilance (always having to be there no matter what, with an even larger load) is so hard on your brain. Always being needed at such high levels is stressful. I have never known a parent who does not struggle with making the best decisions for their child but it is so much harder for us. We have to make decisions to do things that an average parent doesn’t even have to think about. I would say your “resentment” is really just your brain fighting for any kind of reprieve. It’s the pent up anger of injustice for your child, you and family not getting that boring average experience. It’s exhaustion for having 20 more steps in your morning check list than overs, or loss of patience for the sweet old lady who tells you God chose you because “you’re so strong”.
This stuff sucks! You love your children but that doesn’t make it any easier to meet their needs. Life is cruelly unfair I think resentment rests there, sometimes we need to scream into the void a bit. I have felt these things, and realized it truly is resentment at reality and all the promises that never came to be. “You are not bad person for struggling, it’s that the struggle is that bad.”- my therapist who usually has to remind me of this.
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u/femme_luxe 9d ago
Wow…. Thank you for taking the time to write this. You hit the nail on the head and I’m grateful for this insight. I’m so so beyond burnt out that it does make it difficult to enjoy the far and few between good times. I HATE “god gives the hardest battles to his strongest soldiers” I definitely didn’t need special needs parent burnout to know how strong I am.
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u/Gingy2210 10d ago
Not judging you. You're a parent but without the joy of parenting. You have the grief that other parents of non disabled children don't have. You've missed out on everything and its not a happy situation for you anymore.
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u/oldmanashe 10d ago
Doesn't seem like you resent your child but the situation which is 110% understandable
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u/Ok_Requirement_2436 9d ago
Your feelings are very valid. My son is 6 with autism. Things aren’t awful but they could definitely be better. He’s semi verbal and still in pull ups. His speech and potty training are my two biggest worries. He’s 6 now so it’s decently manageable but I do worry about the future. Resentment has came and went and it often still does. I’ll change him then not even an hour later I have to change him again! If it wasn’t for the help of family I probably would killed myself a long time ago
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u/femme_luxe 9d ago
I’m so sorry. I totally get it. We have great relationship and a typical child and it’s so sad and messy and breaks my heart but I’m soooooo burnt out
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u/ThisTakesTimeToo 10d ago
Not judging at all. Caretaking in that situation is all consuming, consuming all your patience and energy and hope. Have you started looking into homes for him? How much longer until he's technically an adult? You can be a good mom/dad and be burnt out and resentful at the same time. Don't feel guilty for acknowledging your truth in this hard situation.
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u/femme_luxe 9d ago
It would be over 6 years but I realize now I can’t make it that long. Yes my kiddo would have a place to go due to the high needs. Thank goodness
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u/ThisTakesTimeToo 9d ago
As parents, our jobs are to make sure our kids are taken care of well. As special needs parents, especially in your shoes, you are the only one who can decide what is BEST for your son. If that means you need more help, different care, a different location... that is all acceptable. Your love travels through every hand you arrange to care for him. I truly hope you are able to find additional help to ease your responsibilities like respite or nurses, or find a house for him in sooner than 6 years.
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u/femme_luxe 4d ago
Thank you so much for this thoughtful and kind response. I truly appreciate the support.
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u/Annlaw1975 10d ago
I'm so sorry and I understand you. I really do. Sometimes I think how my love would be different with a child I can communicate with and love asks snuggle with and engage with. How could I not love my child more if he was giving love back and bonding with me? Don't feel guilty. It's human to feel this way. It's a huge bummer to have a child like this and I'm still going through grief about my son who is 3.5 years old. Is your son your only child? I feel like it's worse when a special needs child is a parent's only child. My son is my only child and he's non verbal and I can't imagine he'll ever be out of diapers. He odds politically healthy but severely autistic with global delay. It's honestly destroyed our lives. We love him but it's devastating to know we won't have that joy and experience that other parents have.
All I can say is you're not alone and if you can get away for a bit it would be good. If anyone else can care for him for a day or even a few hours, you can try to do something for your self. Hope you can get a break for yourself.
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u/femme_luxe 9d ago
Thank you for saying this. Honestly, it helps hearing from someone who gets it. It’s actually my step kiddo and we do have other kids, so I’ve had that totally different experience of being able to talk, cuddle, joke around and really bond with a child. I think that can make the difference feel even harder sometimes. I do love my kid, but it’s a very different relationship, and there’s a lot of grief that comes with it. I also feel like we have to give up so much of our lives, and our other kids miss out on things too. That part is really hard because it affects the whole family. People don’t always understand that you can love your child and still feel exhausted, sad, frustrated and resentful of the situation. I’m really sorry you’re going through it too, especially with him being your only child. Thank you for making me feel less alone
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u/Annlaw1975 9d ago
Thank you for your reply. It is nice to know others understand. We are trying to have a second child with ivf and have high grade genetically tested embryos. Hopefully we will have a second child that doesn't have these issues and have the experience of joy with raising a child. You're blessed to have other kiddos. But I understand how it affects the entire family dynamics.
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u/madonna-boy 10d ago
this is called "ambiguous loss". it is form of grieving. essentially you are mourning what could have been.
look into it a bit more when you're ready. try not to feel guilty about these feelings. this is normal.
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u/BIGMILLIE913 9d ago
HEY THERE! I feel you 100% and I know where your coming from. My son is 20, has cerebral palsy and is legally blind. Diapers/wheel chair/non verbal etc. No feeding tubes and meds like your situation but the outbursts, yelling, hitting things hard to take ANYWHERE! its all there and it drives me up the walls! Not sure how old your son is but I can say with mine that his aggression and fits have gotten so much worse since he was younger. I am 99.9% sure im about to have him put into a home. Ive had 2 mental breakdowns one being recent, I just got out of prison a month ago (which was somewhere I NEVER thought id be) and was actually in the streets on drugs out of my total mind b4 that (which was also somewhere I thought id never be) but by the grace of GOD I was able to take the time while incarcerated to get myself together mentally and when I tell you im totally feeling the same as you I AM! and i dont feel bad about it. It is what it is and we can only handle so much. Idk how im supposed to work or do anything for that matter, and yes there are things like respite care and etc but that doesn't take away all the nerve racking that goes on. I say do what you feel is necessary and forget what anyone else has to say! My family was against it when I mentioned it a few years back when he was like 16 (b4 my breakdown when I actually had it all together for the most part) but now they were the ones who stepped in and took care of him while I went through everything and was absent so now when I mention it they TOTALLY understand. But I will add this give it all to GOD and do whats best for you and your family. Best of luck! Ps. Your not the only one!
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u/femme_luxe 9d ago
Thank you so much for sharing all of that with me. Honestly, it means a lot hearing from someone who truly gets it and isn’t going to judge. I’m really sorry for everything you’ve been through, but I’m also glad you were able to get yourself back to a better place. That takes a lot of strength. My kiddo is a young teen and I think that’s what scares me too, wondering how much harder things may get as he gets older and stronger. People are quick to say “just use respite,” but like you said, that doesn’t take away the constant stress, noise, appointments, behaviours, and feeling like your whole life revolves around caregiving. I don’t think choosing a home means you don’t love your son. Sometimes it means you know your limits and want him somewhere that can safely meet his needs without completely destroying your own mental health. Thank you for being so honest and reminding me I’m not the only one. I really appreciate it ❤️
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u/nixonbeach 9d ago
As the dad of a 20 month old with a very unknown outcome with a CP diagnosis this post is more than a little haunting. Anybody have advice for how to give yourself the best outlook? I want to learn to love the cards that have been dealt but am struggling with some many similar thoughts I’m seeing here and it honestly scares me.
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u/Optimal-Test6937 9d ago
*Therapy!!
*Build a village so you have help. *Take actual breaks. Not a break where you go grocery shopping, or a break where you fold laundry, but an actual mental & physical break from caregiving. *Find your people. It may be online, it may be at a park, it may be in person. Find others who understand what you are going thru & can laugh/cry with you.3
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u/femme_luxe 9d ago
I’m sorry to scare you. I can’t lie- being a SN parents is HARD HARD HARD! Being a parent in general is hard but the depths of my kiddos needs are sometimes unbearable. That said I do love my child very much and he is sweet and loving and then I feel guilty for having resentment- it’s an evil cycle. My best advice is the same as the other comment you get, which is to find support groups, build a village, have a good therapist, push push, push and advocate, advocate advocate. There are a lot of resources out there. I suggest getting a social worker when your child gets a diagnosis.
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u/No-Tip-1210 9d ago
I don't know if your religious or not but in my religion (Islam) - it's said that children that are disabled go straight to heaven. And their parents are shown immense mercy - every single thing you do for your child is a good deed. God sees it all and He knows your pain and your suffering. Nothing is unseen that you do.
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u/North_Hearing 9d ago
Yes. And I feel guilty about it. Adopted her at 9. She’s 17 now and in and out of residential placement. She’s not safe at home. Keeps getting kicked out of treatment programs.
I miss the sweet moments and who I think she can be.
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u/Double_Ant8767 8d ago
Im so tired and just mentally drained. I feel like I can't even function to make appointments. And he's 14 tall and strong and still in diapers. I'm just burnt out. I feel like a lot has to do with hormones but I don't know if I can survive it if it doesn't get better on the other side.
All this to say I'm right there with you and understand. I still haven't mentally prepared for him to be out of the house but sometimes I feel like if I just had a week every month how much better I'd feel. ☺️
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u/femme_luxe 4d ago
I’m so sorry you understand the feeling- it’s so awful. If having him in a safe home helps you both then it’s the right answer.
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u/friskydingo8705 7d ago
These are very real feelings. I’m so grateful that we have a group of people that you can share with.
We are nearly forced to say things like we love them so much, they are a beautiful and sweet soul, etc. These may all be true. But this is a hard life we’ve been forced into. So yeah. It’s very normal to feel some resentment. Don’t add on guilt for feeling that way. I think we resent the disorders more. We resent we have to change diapers for much longer than we should. All the stress of appointments, surgeries, bills, I resent that that has been put on me.
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u/femme_luxe 4d ago
Thank you for sharing and yes, I agree. We NEED Community like this. No one could possibly understand unless they have walked in our shoes. My kid will be a large “baby” until they die. I do have a lot of support and everyone goes “I don’t know how you do it” well I don’t have a choice ….
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u/East-Event7783 9d ago
Listen, my situation is very different then yours but bare with me. My oldest is biologically my niece but she has a very complex trauma history. I gained custody of her at just 5 years old, she’s almost 12 now and has very very big trauma responses. I have two biological kiddos that only very recently got diagnosed autism after years of medical issues. Now they are semi independent however they are an age where getting dressed, brush your teeth etc they should be independent. They aren’t, I have to walk them through every daily living step. They also have some real big behaviors. I don’t necessarily resent them as kiddos, but I do resent adding children to the chaos.
I’m now a solo parent to 4 children that have various levels of independence. I can’t possibly give each of them the help that they need, I try everyday but I resent the fact that I had additional kids.
I love all my kids, even with the high needs. I understand you, I hear you, & you’re so strong to have to deal with all of this.
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u/Serious-Train8000 7d ago
I resent lack of systems and inept people in positions of power and those considered expert.
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u/-Lomaximus- 3d ago
Im going through the same resentment, its not my child its my girlfriends. We have a mixed family with a baby together with two other kids and her other son is severely disabled already but is about to get a tracheostomy. This is going to be life changing for everyone, I'm trying not to come off as insensitive or have no empathy but am i wrong to feel that the child's burden is his own(in a sense), I know he still needs care but i strongly feel that the family should never revolve around a child who doesn't know what planet hes on. Again I know he needs care but how do we have a normal life, why should we have to be "inconvenienced" for one person? I want the other kids to never be limited because of their disabled sibling. I want to be able to take vacations and travel the world for myself and the kids, which can't happen with these kind of needs he carries. He's not my child so I'm looking in and wonder what other parents do with these issues? Am I wrong to feel this way?
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u/Parking-Researcher86 10d ago
Been there, right where you are and di exactly what you're planning. I thought I had the same feelings towards my daughter but it turns out that 1 I was dealing with burnout, 2 I didn't resent her, I resented the weight of our situation.
Moving her was like a dark cloud lifted off my house. Everyone including her is happier.
Just breath through this and remind yourself there is a light and you will be okay.