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Mom admits, 'My son's disabilities ruined my life, I'm humiliated every day.' AITA? 2 UPDATES 1.5 YEARS LATER.

Mom admits, 'My son's disabilities ruined my life, I'm humiliated every day.' AITA? 2 UPDATES 1.5 YEARS LATER.


When this mom admits to hating her life because of her son's disabilities, she asks Reddit:

"My son has significant disabilities, and I hate that this is my life. AITA? + 1.5 year update?"

Before I begin you should know that I love my child unconditionally. He is so smart in his own way, and has a generous heart. I know this.

But I also, sometimes… okay, a lot of the time, hate that this is my life. I hate the looks we get. When someone asks him a question then awkwardly realizes he can’t respond.

When he has a major, hysterical meltdown in a store and I have to sing and rock him on the floor until he calms down. When other kids realize he isn’t as “normal” as he looks…

I hate that he will probably never have a real friend. That I will have to fight for him to be included in everything. That his birthday parties will likely be adults/family only.

I hate not being able to go to church without making sure they have an adult with training to be with him. I hate how hard it is to find adults to be with him. And that I have to be the one to train them.

I hate that he will be my only child. I don’t know that I can handle a second child with disabilities… and it’s not fair to him if we bring a neurotypical child into the mix. It’s not fair to the other child either.

I hate that he has to be watched 24/7. I never get anything done because I am exhausted from keeping him safe while trying to give him room to grow and learn.

I hate the appointments, the juggling of specialists and primary care doctors and trying to remember who needs to be told what. I hate having to sign a kajillion disclosures to share information, and I hate that even my husband has to ask me what all kiddo has going on.

I hate that he hurts me. Yes, I understand the reasons: trauma and development and delayed attachment and frustration. But I hate that my baby boy, my darling child, regularly kicks and hits and bites and scratches me.

I hate saying, “Kind hands, please.” I hate how much I rely on his tablet to occupy him. I hate when people say it’s just a phase.

Or all boys/kids do that. It’s not true, and they know it. But no one is comfortable enough to say, “that sounds like it sucks.” Which is what I really want.

I hate that being away from him takes so much planning and money. That we can’t hire just anyone to watch him. It has to be an adult with training, or a respite provider (which is impossible to get), or a rare, understanding friend. Or my husband.

Most of all, I hate that I hate any part of being his mommy. Because I always wanted to be a mom. And when we found out we couldn’t have biological children, I was so happy my husband agreed to adopt. I knew it would be hard. I knew it meant raising a child with disabilities and trauma. And I worked my ass off to prepare for it.

But here I am. On Reddit, telling however many strangers that I hate being a mom to a child with disabilities. Because there is nowhere else I can go and be this raw and open about it.

And I hate that our society is the kind of place where parents like me can’t be raw and open. Because I already know some of you are judging me, or calling me a snowflake, or passing by this post because this sliver of my reality is too much for you to bear on top of your own stuff.

But I had to say it. Had to let it out because it’s too hard to carry around on top of all the other shit I have to carry every single day. AITA?

Before we give you OP's 1.5 year update, let's read some of the top comments:

davis6 writes:

Out of curiosity, what exactly did you expect other than a life of struggling with a disabled child? Not trying to be rude, I just can’t imagine anything other than a whole lot of pain and frustration.

OP responds:

Just because it is hard and I sometimes hate it, doesn’t mean it isn’t what I wanted. There are a lot of positives to raising my son, not the least of which is simply the joy of being a parent.

I get to celebrate so many wins with his team, with him. I get to meet amazing therapists and people who I never would have if I wasn’t part of this subculture. I get to use my strengths in advocating for him and juggling his schedules.

But again, just because I chose a hard journey doesn’t mean I am immune to it being difficult. Just because I knew how hard it could be going in doesn’t mean I can’t feel the pain of our struggle while living it. And it doesn’t mean I have less of a right to vent than any other parent or person out there.

I wouldn't do anything different. I did the research, spoke to the people, and knew it would be hard. I even knew we could never fully prepare for a situation like ours. It is harder than I ever could have imagined.

And it sucks a lot of the time. But I love my kiddo. Period. Loving my son and needing to vent my hatred at our situation are not mutually exclusive. Just because I chose this doesn't mean I am somehow immune to feeling it.

Hey, thanks for asking honestly and kindly. I did a ton of research before adopting... probably 30+ books on attachment and trauma, plus the classes and then, once we were matched, a ton of research into his potential diagnoses and outcomes.

Honestly, we were probably more prepared for him than most parents are for any kiddo. We knew it would be hard, knew the potential ups and downs, and had read everything we could to prepare for our worst case scenario. We do not live our worst case scenario. In the time he has been with us, kiddo has exceeded so many expected and given us so much joy.

On that front, I feel like I wouldn't change anything. Of course, loving my son and knowing he is doing so much better than we anticipated (he took a sip from a straw the week of his fifth birthday and I at the breakfast table. HUGE step!)

doesn't change that this journey is hard. Knowing it would be hard and mentally and emotionally preparing for it doesn't mean we don't feel the pinch.

I knew my son self-harmed. I didn't know how deeply it would hurt to watch him slam his head into any hard surface and fight me to do it.

I knew he might hit and hurt me. I did not expect how often it occurs. I did not realize how hard it would be to try and not react, because showing that it makes me sad just fuels the fire.

I knew people would stare and it would be awkward because I babysat for families like mine. I did not realize how often I would find myself on the floor of a store, trying to calm him down just enough so I could maybe leave with our groceries.

I didn't realize how it would feel to fireman carry a screaming child out of the store, knowing I would have to come back so we had something to eat that night.

I knew we would deal with sleep regression. Knowing did not prepare me for weeks and months of him waking up At 2AM and rampaging for HOURS. It didn't prepare me for my husband and I fighting over who gets to sleep in past 4:30am on the weekends.

I knew it would be hard to find support. I didn't realize we would have to move across country with a child for whom transitions are absolutely traumatizing, just so we had a chance at getting him the services he needs.

And there is so much more... That said, I would not trade my son for the world. Yes, I hate our situation more than I would like. But I love my son. I love his laugh, and his cheeky, "I just peed on the floor " grin.

I am in awe of his strength and never-ending energy. I love when he snuggles up to me and babbles "oo ni, oo ni" to get me to sing his bedtime song.

Loving him and hating the situation aren't mutually exclusive. Yes, I walked in knowing it would be incredibly difficult. Yes, it is way harder than I ever imagined.

But my son is way more amazing than I imagined, too. It is so, so hard, and I cry more than I ever thought I would. I am also so lucky to be a part of this kid's life. To watch him grow into himself, to celebrate every small milestone, to meet amazing men and women who walk a similar path.... I am not immune to the blessings my son has given me.

I just really hate having my neck punched and my nose slammed. I hate having people skirt around us in the store, or ignore his presence and ask me invasive questions about him like he isn't human and there. If that makes me a monster.... shrugs I just thought it made me human.

reedbackcom writes:

I have a niece with two autistic children. The older is farther along the spectrum than the younger. There came a point when she and her husband could not handle him anymore. Exhausted he was physically stronger than they were. She was heartbroken and guilty to put him in a group home.

It turns out he is quite content there. He has fewer meltdowns than he did at home. When he comes home on weekends he keeps asking when he can go back. BTW, her educational expertise is actually autism so it’s not that she didn’t know the techniques to manage this. But for whatever reason, he prefers the group home.

toastietee writes:

People who are being harsh to you here have no clue what it's like. My brother has incredibly tense, complex needs. He has Autism, but one of the most rarest forms. He has childhood disintegrative disorder- think dementia but in children. He went from being a typical kid to a baby trapped in a man's body.

He used to be able to write his name, he used to play tag, he used to say full sentences, he loved music, fashion and cartoons. Now he's 17 and I have to wipe him after the toilet, bathe him, dress him, feed him. He can only scream. He can't use cutlery. He'll never be able to socialise, tie his laces, or communicate verbally ever again.

And I'm just his sister. The stuff my mum has to do is beyond anything I am capable of and it's some of the most exhausting, taxing, laborious tasks you can do. People don't understand what it's like to be a carer, if we say one negative word about the experience they assume we don't love them, when in fact we do.

It's that love that pushes us through, but that doesn't mean we don't feel anything! We need breaks, we need someone to tell us it's going to be okay, and we need support too! But everyone forgets this.

Whether you're ill or tired, or want to do something for yourself (more often than not) no one is there. We can't just get a haircut, or go to a Dr's appointment, or attend a relative's wedding.

People take it for granted that we're expendable as they wake up when they want, drive whenever and wherever they please, book their holidays and go to the park on a whim.

Meanwhile the likes of you and my mother wake up, get ready for the day and brace yourselves for intense caring around the clock. I highly respect you, and I hope you realise that to those of us who do understand, you're an incredible parent and what you do is above and beyond. Much love!

jheybinchery writes:

This has been my life. My boy is 21 now, HFA. Every. Single. Fucking. Day during his school age years were unbearable. Phone calls every day from the school. No friends. No birthday parties. The isolation.

The doctors appointments which were useless. The Hope that eventually gets sucked into a black hole and forgotten. The lack of help. The tens of thousands spent on advocates.

The suck ass family that won't help. In our case, my son has greatly improved now that he is out of school, he actually has 2 part time jobs, and has pride in himself.

But..... if I knew then what I know now, I really don't know if I'd have chosen to have kids. I love love love my son, but dealing with his disabilities during his school aged years has probably shortened my life by a decade.

boose81 writes:

I am you. My only child has multiple mental health issues, which have caused additional physical concerns. She’s 21 now, still living with me, not working, no school…she was born when I was 18.

I love her with every fiber of my being, but so often I find myself wondering what life would be like if she were “normal”. A high school diploma, a part time job, friends and extracurricular activities. Things that so many people take for granted.

I see you mama, you are not some in how you feel. And I completely agree that “it sucks”. I want to say it’ll get easier, but I’m not one for making promises I don’t know that I can keep. So all I can offer is: when you’re feeling low, remember that you truly aren’t alone. A random stranger on the internet is rooting for you.

And now, OP's first update a year and a half later:

A little over a year ago I came to this sub to vent about the difficulties of raising our adopted son who has significant disabilities. The response was overwhelming. Many people reacted with anger or hate, but the ones who stick out are the ones who said, in comment or chat, that my post was their truth, too.

So I am back, after a little over a year, to share an update to my story and to let those other parents, siblings, and caretakers that it’s okay. First, the update. My son has significant disabilities, and I still sometimes hate that this is my life.

In the time since my first post, my family has moved to another state to get better services for kiddo, gotten several diagnoses for him, including a rare genetic syndrome, and celebrated the fact that my son has now been with us longer than he was in the orphanage.

He is doing amazing in an eight student autism classroom, started assent-based ABA therapy, and has a couple kiddos who call him friend. Next month he will start play therapy to help with his trauma history, and soon after I will be in individual therapy to help me cope better.

Things have improved in a lot of ways. He is babbling more and even sang in a school concert a few months ago. We got a safety bed and medical stroller for him so I no longer have to spend hours safe-holding during a meltdown. And he is working hard to learn to pee on the potty.

Best of all, I worked hard to make friends in this new state, and they are so incredibly supportive. Our old support network was great, but these friends literally asked me to train them so they could watch kiddo for me sometimes.

My husband and I went on a date for the first time in two years last month, all because of these amazing people.

But life is still hard and sometimes it really sucks. Last week, in particular, brought me back to the place I was a year ago. Kiddo tried, repeatedly, to gouge out my eyeballs.

My arms are scratched to hell from protecting my face and I had to shut him in his safety bed at one point and just listen to him scream and cry because I was afraid I would fight back if he attacked again.

He rage stripped and peed on the carpet at ABA therapy, then bit me when I put him in the car at the end of session.

After yet another argument, I threw my wedding ring at my husband, telling him to give it back when things got better. I’m not sure if he will ever give it back.

And to top it all off, my mortgage payment overdrew the bank account and my husband reapinded by working late every night. Which would be fine if I hadn’t needed help with our son.

Overall I think I am in a better place than I was last year. I know this journey will ebb and flow. We will have great seasons, awful ones, and some that are just so-so.

While I am constantly overwhelmed by trying to parent my son well, I am also overjoyed at getting to watch him grow and learn at his own pace and in his own way. And when things are hard, and my eyelids are bleeding, that’s the part of the journey I focus on the most.

Now I want to address those parents, siblings and caregivers for whom my first post rang true. Hi. I know you’re not okay. And you know what? It’s okay to not be okay.

It’s okay if you feel overwhelmed and crushed and hate this life at times. It’s okay to put your kid in their car seat, safety bed, or medical stroller, step away, and just cry because it’s too much. It is too much. And you are doing a good job. Just keep trying.

I want you to know It isn’t impossible to hate the situation and love your child. Those two are not mutually exclusive. And feeling angry or bitter about the situation does not make you a bad person or a bad parent.

Parenting a child with significant disabilities is hard and isolating and overwhelming. There is so much to do and you feel like you can never do enough. But you are trying, and that is enough.

And you know what? It won’t always be this bad. Some days you’ll be the version of me who made my first post. Other days you’ll be this version of me: the one who is tired but hopeful, and able to make one more phone call to get your kiddo that next device/therapy/appointment/whatever that will help them to keep growing.

Here’s to another year of this wonderful, messy life that is parenting special needs and disabilities.

My son’s current official diagnoses include Smith-Magenis Syndrome and ASD lvl 3. He also has a significant trauma history, as many adoptees do. He is currently in first grade, so I expect we will get many more diagnoses as he grows and we continue his care with specialists, therapists, and as he grows in his ability to show and tell us what he needs/feels.

Because we were as prepared as two people can be to parent a child like this. He deserves love, care, and affection, and I am uniquely suited to provide that for him.

I studied education, am an excellent researcher, am comfortable with the IEP, medical and legal processes he needs and will need to have a strong advocate for, and am both laid back and organized enough to deal with the unique chaos this life involves.

We have many personal reasons for choosing adoption and choosing our specific adoption route. All you need to know is we didn’t just wake up one morning and think, “Hey, a kid with disabilities would look good in our spare bedroom.”

Yes, my spouse and I prepared. Yes, we knew how hard it would be, and anticipated that our imaginations couldn’t touch the reality.

Yes, we had money saved. And yeah, shit happens anyway. (Like a global pandemic and extra surprise diagnoses and health insurance not covering necessary medical treatments for reasons and, you know, life.)

Just because I chose this does not mean I do not have the right to vent. That is what this sub is for: venting. People work jobs they hate because they are good at them; they vent. People have “healthy” babies every day; they vent. I can love my child, be a good parent to him, and still struggle and need to vent.

Update 2:

If our child died before us? That’s the million dollar question. I have started working on a plan, but it will probably always be evolving as he grows and our family situation changes.

For now it involves a detailed will stating the succession of guardians after my husband and I (carefully chosen for their ability to advocate and care for him, rather than their blood relationship to us), a special needs trust, and a lot of research into how I need to prepare for and alter the plan as he ages.

It’s a terrifying prospect and future reality that I will likely die before my child. I have to trust in a broken system and other people to step in and do as good or better of a job than I do. And that’s just… Not something I like to dwell on too much.

This probably isn’t a great answer, but hopefully it gives you an idea. Basically a lot of legal stuff needs to be set up beforehand and then we just hope it goes better than we expect.

My husband is a good man who is very overwhelmed. He is also very traditional and believes the way he can best support us is financially. Our marriage is strained, and he definitely does not help in the ways I wish he would, but we are both at fault for not seeking counseling and pushing one another away instead of coming together.

I know I’m making excuses for him, and some he probably doesn’t deserve, but he is a good dad in his way. Our son adores him and he is very much the preferred parent right now.

He has taken on the responsibility of co-sleeping with our kiddo until I gave the emotional and mental capacity to restart sleep training. He is not capable of some of the things I am.

IEPs and medical plans and legalese and keeping a mental list of all the next steps are not his strong suit. But running through stores to make our son giggle, or taking him to Young Athletes and encouraging him to throw a ball, and snuggling up at night in a twin-sized safety bed…

Those are things he excels at. It may not be enough for me, but I think often on a quote from a parenting book I read several years ago, “You cannot be responsible for your spouse’s relationship with your child.”

As many therapists (and friends) have reminded me, my husband’s actions are outside of my circle of control. I can only control my response.

Even if our marriage doesn’t last, and there are lots of reasons it may not make it through this season (both of us being guilty parties in many ways), I know he will still be there, in his unique way, for our son. Pretty please don’t comment in original posts.

Readers continued to weigh in on OP's issues:

I'm a childfree person. I have friends with kids, and while I really don't feel comfortable babysitting youngsters they know I'm here for emergencies.

The role I play for those friends is to be the person that OOP describes wanting - a person who is safe to complain to about your kids. I'm not going to judge you for being tired, overwhelmed, upset, etc for raising a kiddo because I know I could never do it.

If you tell me how they scream all night and it sucks, I'm going to believe you. If you need to vent into some ice cream about how you feel like you ruined your life, I'm going to hug you and give you that space. If you feel like you're overwhelmed or not good enough, I'm going to validate you and support you.

I fucking hate that parents are just expected to be sunshine and rainbows about everything. You are people, and most of you are just trying to do your best to make decent other people.

I stg parenthood is the one situation where everyone who goes through it knows it sucks ass sometimes, but absolutely nobody is allowed to express that.

ETA: For anyone who wants to become this person for your adult friends, I highly highly recommend that you open the conversation with a "how are you, really?" And then give the person space to answer you. Sit beside them, not across from them, and don't feel the need to maintain eye contact as much as you normally would.

If your friend starts complaining to you, you can outright ask "do you need help finding a solution or do you need to vent?" (And avoid adding "just" anywhere in there, it can make someone feel like one option is more valuable than the other.)

If your friend has a long term partner who is involved in whatever they're venting about, maybe offer to talk to them too. They are a team and the whole team might need the same support - when one person gets it and the other doesn't that can harbor some resentment.

Once someone has vented and seems calm, you can ask them "how are you feeling now?" And if they say better, great! But if they say overwhelmed, exhausted, guilty, etc, that's also a good thing.

Emotional recognition and expression is so important and we don't give people space for it. Validate how they feel, especially if it's negative, and then you can ask "is there anything that we can do that might help a little more?"

Maybe helping with laundry once a week, or running for groceries from time to time, or just scheduling a vent session for another day could take that little edge off that makes them less overwhelmed.

Raising the tiny humans, even the ones without disabilities, used to take a village. That's not because it took more effort to feed and bathe them 50 years ago.

It's because caregiver burnout is a very real thing and diffusing the emotional/mental labour between many people is a human necessity. Remember, your friend is not ever angry at you, they're angry at their situation.

What do YOU make of OP's dilemma? Any advice for her?

Sources: Reddit
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