I never told anyone this, not my parents, not my friends, and definitely not my brother. But I have to get it off my chest. Growing up with a disabled brother wrecked my mental health. In school, I got bullied, not for anything I did, but just because I was related to the weird kid.
Friends were hard to come by, and I grew quiet and withdrawn because of it. I left high school early for college classes and buried myself in online games as a way to cope. Home was worse. On good days, my brother seemed normal.
On bad ones, he was a nightmare. He had a short fuse and got violent. I got hit for winning at games. Things got thrown at me for reasons I never understood.
My mom babied him and figured that since I wasn’t like him, I could handle myself. But kids still need help, and I felt invisible. Vacations were ruined. Once he grabbed my travel diary, read what I wrote about him, and tore it up.
Another time he punched me in the face and split my lip for no reason at all. I stayed behind in the hotel room, scared and alone, while my parents took him out for fun. To this day, I carry resentment and anger from all of it. The worst part is I can’t blame anyone.
It wasn’t his fault he was born that way, and my parents tried their best. I still love him sometimes. A lot of parents of severely disabled kids end up divorced because the strain is too much. The child’s needs always come first, and the parents worry about what will happen when they get too old to care for them.
The kid never moves out, never becomes independent. They require constant hands-on attention, and it falls mostly on the family. Everything becomes harder, logistically and emotionally. There are rewarding moments when the child is happy, but life is just more challenging.
I relate to this thread more than any other I’ve seen. Worrying about my sister’s future is a constant fear. I’m luckier than most, but the thought of my parents dying still terrifies me. People always talk about disabled children like they’re all the same, and they aren’t.
Some can go to regular school and grow into independent adults. Some can’t move, speak, or do anything at all. And there’s a whole range in between. I deleted my account a month ago, but I had to respond to this.
How much sacrifice? My entire life. My daughter has a condition documented in only about eighty children since 1995. She’s severely disabled, both mentally and physically.
I quit my career to stay home with her, and that destroyed my marriage. My husband holds all the power now. He’s had multiple affairs, but where am I supposed to go? I need to be here for her.
I also have two older boys, and they don’t get a normal childhood. I try hard to give them one, signing them up for sports and keeping our door open to their friends. But they know that at any moment, our house could fill with firefighters and medics. I’ve had to put my daughter on palliative status, which means a DNR, and I had to sign that death warrant myself.
We will bury her one day, and my boys, thirteen and nine, know it. They know their sister will die. We take family vacations and have pets and go to the rec center, but it’s far from normal. My whole life is my children, whether it’s my daughter’s treatments or my sons’ sports, just hoping I’m doing something right.
I went from career woman to stay-at-home mom, and I don’t have a life of my own anymore. But I’m okay with that. I love that little girl more than life itself. She’s shown me incredible things I never would have known.
She’s introduced me to the most amazing people. And she’s given me the ability to love my other two even more than I thought possible. Has it been a long, hard seven years? Absolutely.
I was never guaranteed healthy children, and her condition can’t be tested for in the womb, so I never had that choice. I don’t think I could have made it anyway. Right now she isn’t in pain, so saying I’d do it again isn’t selfish. But at any moment, she could spiral downward, and her life could become incredibly painful and difficult.
Then it would be selfish. I’ve sacrificed everything, and it was an adjustment. That’s an understatement. But I love her.
She’s my daughter, and I’d die for her, just like I’d die for any of my children. I can’t imagine my life any other way, so honestly, yes, I would do it again. Ask me tomorrow or next month, and my answer might change. But today she’s happy, so yes, I’d do it again.
It really depends on the degree of disability. I have family members with varying levels of mental handicap. My uncle, who was likely disabled, lived with my grandmother his whole life but was fully functional. He works, drives, shops, all the things we take for granted.
My stepbrother was severely handicapped. He had the mental capacity of a six-year-old, except he was six-foot-four and a big, burly guy. He was the sweetest person you’d ever meet, always hugging people, always smiling, always had a kind word. But he couldn’t be left alone because, like most six-year-olds, he’d get into trouble.
As a teen, he went to live at a campus facility where he could be watched around the clock. He worked simple maintenance jobs there. He had some behavioral issues when he lost his temper, so my stepmom, a single mother of two, couldn’t handle him alone. She and later my father visited him twice a week, never missing.
If we went on vacation, he’d come with us, sometimes with a staff member to help. Handicapped children are a lot of sacrifice, but like any child, the joy they bring depends on who they are and who the parents are. At the campus where he lived, there were people who were dropped off as children and are now in their fifties and sixties, never knowing their parents. There’s nothing wrong with needing help.
My family did. But if that ever happens, don’t just walk away and never look back. Despite all the difficulty and worry, I know my family and I would move heaven and earth to get my stepbrother back. We lost him four months ago, unexpectedly.
I didn’t plan to write so much about him. It still hurts. He loved the holidays, ice cream, animals, and his family. I only knew him in my adult life, but he changed me for the better because he was such a great man.
I don’t know how my stepmom deals with losing her baby. Handicap doesn’t mean less love or less joy. There’s more financial and emotional stress, but from what I’ve seen, it’s worth it. I’m not a parent, but my sister has developmental disabilities, so I’ve watched my parents go through it, and I’ve had my own experiences.
We’re active in Special Olympics, so I’ve gotten to know a lot of families with disabled children. It’s very up and down. Sometimes it’s rough and time-consuming, and other times it’s almost like there’s nothing wrong at all. Parents sacrifice a lot and work hard, and sometimes it’s overwhelming, but in the end, it’s rewarding.
They’re your child. You love them and care for them just like you would a healthy child. The only difference is the method. For me personally, I’ve gained patience, extra tolerance for people, and respect, because you never know what hidden obstacles someone is facing.
Most importantly, I’ve learned to see people with developmental disabilities as people. It’s easy to shrug them off as slow or subpar, but some of the most kind, loving, gentle people I’ve met are those with disabilities. They’re beings just like you and me, they just have a harder time interacting with the world. If my sister had died at birth, it would have been sad, even in retrospect, because abortion was never an option and her disabilities came from a traumatic birth.
She’s our daughter, our sister, part of our family, no matter how much work it takes. But one day, you can no longer be there for them. My former neighbor was the sole parent of a forty-year-old woman with the cognitive development of a four-year-old. She was a loving mother in her mid-sixties who had simply reached the end of her ability to keep caring for her daughter and the home.
The house was sold, and the daughter went into a group home. It’s the saddest thing. I’ve only seen her a couple times in the last two years, and even though it was the right decision, the mother is consumed with guilt. The daughter doesn’t understand why she can’t go home.
When she sees me, she holds me in a death grip and begs me to take her home. When I was fifteen, my brother was five. My mom could only be around on weekends, so I was on my own with him. At first, school and daycare handled him, but when he got diagnosed, they kicked him out and raised their rates to deal with the problem child.
I missed so much school that they nearly called child services on us, so we both quit going. I homeschooled my brother for three years until my mom came home for good, and then I ran. That’s a long time for a teenager to raise a disabled child alone, trapped in the house twenty-four hours a day. I cried myself to sleep feeling like I was rotting away.
Now I’m twenty-six, and I don’t want children because I’m terrified of having a disabled one. My mom told my brother I ran away because of him, and now he hates me. He hasn’t spoken to me in over three years. I don’t have advice, but I hope things get better for you.
I’m not a parent either, but my brother has muscular dystrophy. He’s been in a wheelchair since he was ten, and every day I wake up hoping to see him walk out of his bed. Walking is such a small thing to most people, but it would change his life, and it kills me that I don’t appreciate him more. He’s been through so much, depression, hours of counseling, and I still get annoyed at him for small things, like asking me to plug in his laptop charger because he can’t reach it from his chair.
Then I feel like a massive pile of crap because I know he wouldn’t ask if he could do it himself. It was hard growing up watching him get more attention than I did, and I was a jerk to him before I matured. I’m seventeen, he’s twenty-three, and I’d do anything to see him happy again. I don’t want him healed, I understand that might not be possible, but I can’t bear seeing him depressed.
It’s not a burden on me or my family to care for him. I’d do anything humanly possible to help him, but some days it’s hard to watch him suffer. On the other side, I wish I hadn’t survived. I’m not suicidal, but my quality of life is severely impaired due to birth defects.
My son is nine. He suffered a brain injury in May of 2008, just before his fifth birthday. He laughs, smiles, plays, and communicates, so we’re fortunate. His condition could be much worse, even though he’s dependent on my wife and me for everything.
He can’t walk or talk, and he has poor fine motor skills and planning ability. My wife focuses on his day-to-day therapies and schoolwork, while I’m always thinking about the future. It’s too hard for her to look far ahead. I worry about how we’ll cope as he gets bigger.
When he was injured so young, carrying him around was nothing. I call this the golden age of our brain injury journey. We could still come and go like before the accident, hop on a plane to Disney and ride the rides with little difficulty. But now he weighs seventy pounds and is four feet tall, and I’m acutely aware of how much our lives will change.
Our house is too small. His equipment keeps growing. The bathtub is comically small for him. His wheelchair won’t fit through the living room.
He doesn’t fit in toddler diapers, but adult undergarments are too small. These issues pop up out of nowhere and throw you. You’ll think you’ve got it under control, therapy is going well, school is good, he’s happy, and then you pick him up for a bath and feel five years of deadlifts strain your back while noticing he’s outgrown the tub. We never second-guessed our decision to bring him home when the doctors told us five years ago he’d be best cared for in a facility.
It’s the most stressful, intense, back-breaking burden I’ve ever carried. But I can say without a doubt that the happiness, the bond he shares with his little brother even without a spoken word in five years, and the unconditional love he shows us, is the most rewarding thing I’ve ever known. I have a brother with Down syndrome. I can’t imagine a parent’s love, but knowing how much I love my brother, I know a parent’s love is even more intense.
People always say, I don’t know if I could handle that, about wars, cancer, or raising a disabled child. But everyone who’s lived through it gives the same answer. You could, if you had to. When my parents told me my brother would be born with Down syndrome, I cried for days.
He wasn’t even born yet, and my heart was broken. When he was born, it was the most special thing I’d ever experienced. Children with Down syndrome usually look different, but every time I looked at him, he looked normal to me. Other people saw him as different, but we never did.
He’s ten now and the loveliest, happiest child I know. He loves John Wayne movies, WWE, and bowling. He goes to school every day, and he’s addicted to his iPad. Whenever I visit, he shows me new pages he’s found.
Lately, he loves searching for flip phones. There are always challenges. It’s hard to communicate because I don’t always understand him, and my parents constantly fight to get him the services he needs. But there hasn’t been a huge financial burden because we use every state resource we qualify for.
He’s had health insurance since birth. His life is absurdly normal. A lot of people in this thread have struggled, and it’s never easy dealing with a child who’s different. But every disability is different, and you learn to manage it.
You love that child from the day they’re born, even before. I wouldn’t trade a single day with my brother to avoid the struggles, and I’m certain his parents would say the same. When I was pregnant with my five-year-old, my biggest fear was having a child with autism. I don’t know why, but it shadowed my whole pregnancy.
And sure enough, my son has autism. He’s sitting next to me right now, talking about the movie he’s watching and telling me he loves me. His disability isn’t as profound as some others here, but it was what I feared most. And now I wouldn’t change him for anything.
I’m a parent of a special needs child. He’s five and has the mind of a two-year-old. He’ll likely never progress past it and will eventually regress. He has a terminal genetic disorder called Sanfilippo syndrome.
It isn’t tested at birth, and he wasn’t diagnosed until he was two. He was perfectly normal at birth, and we only realized something was wrong when he started falling behind his twin brother. It’s extremely hard to say, and I can’t imagine my life without him, but if I had known before he was born, I would have chosen not to have him. Let me be clear, the only reason is that he’s had to go through hell just to have a decent quality of life.
Sanfilippo is horrible. A child’s body and mind deteriorate, and they suffer. I used to think that if I had a child with issues like this, I couldn’t love them the same or handle it. But my little man has changed my life for the better.
He’s made me a better person. He’s been through more than most people will in their whole lives, and he’s still happy and loving. My husband and I have made many sacrifices, but it’s worth it just to see him happy while we still have him. I have a six-year-old with autism, plus seven- and eight-year-old stepsons with autism.
My son is high-functioning but needs a lot of help. We started early intervention at twenty months, which meant four hours a week sitting with him, teaching him to clap, sing, and vocalize. There are endless doctor and therapist appointments every week, and his schedule is extremely rigid. Deviating from it is like stepping into the seventh circle of hell.
So you give up a lot. But I’m lucky. With medication, cognitive behavioral therapy, and training, he might live independently someday. My older stepson never will.
He’s mostly nonverbal, still in training pants, and may never be mainstreamed into regular school. He’ll be dependent on others for life. So there are varying levels of dependency and sacrifice. I’ve never wished I’d made a different decision, not even at three in the morning when he’s been screaming for hours and trying to slam his head against the wall.
My stepson’s biological mother feels differently and has told him he’s the worst decision of her life. We’re locked in a custody battle with her. I also have two physically disabled children who require extra work, but I wouldn’t change my decision on either of them. The benefits are the same as raising any other child.
They make you laugh, they make you stronger, and they give you purpose. My sister isn’t mentally disabled, but she has severe emotional problems, and it’s strained the whole family. She’s twenty-two and has never held a job longer than a few months without getting fired. She lived alone once, sharing a one-bedroom with her boyfriend and my brother until they broke up and he stopped covering her rent.
As a child, she lived in a home for emotionally disturbed kids for five years after getting expelled from every school in the county. It was expensive, and since we were on welfare, my mom couldn’t afford to support us. I got emancipated at fifteen, and my brother moved in with family five thousand miles away. She never forgave us for putting her there, and we never forgave her for financially crippling the family.
Now she lives with our mother, who also has anger issues. It’s not ideal, but at least my mom gets therapy now. My sister will be moving in with me soon because she’s burned every resource she had. She’s been fired from too many jobs and lost too many friends.
A lot of family won’t take her, so my brother and I are the only ones. She cursed me out because I said she should pay a hundred dollars a month in rent. She thinks it’s sad that family won’t house her for free, and she insists I rearrange my one-bedroom apartment to fit all her stuff. In return, she’ll cook me dinners and make me a hat.
Sure. My brother and I know she’ll never be fully independent, not because she isn’t smart, but because she can’t hold a job. She’ll eventually steal something, curse out her boss, have a meltdown, or set something on fire. We don’t like to talk about it, but we’re working on getting an RV so she’ll have a place to stay out of everyone’s way.
My brother Scotty is eighteen and suffers from a birth defect that leaves him unable to speak except for grunts, and he’s fed through a tube. He’s spent his entire life trapped in a room in front of a TV because that’s all he wants, music, cartoons, and what I think is masturbating. I’m honestly not sure, but every time I walk in, he’s humping his pillow. I’m only five years older than him, so I get it, but it breaks my heart.
My parents are both addicts, and I’m sure that contributed to what happened to him. My stepfather collects forty-eight thousand dollars a year frauding Medicare as a private health aide with a worthless certificate he got in two weeks. My brother is so neglected it’s unbelievable. His room smells like urine and feces.
I’ve heard stories of him nearly dying on the operating table due to heart defects. Dying would have been mercy for him. Even though I don’t live there anymore, I wonder what his life is like, trapped in that room with the only human contact being diaper changes and feedings, if they even remember. I’ve been struggling with whether to call social services for a long time, because this is just wrong.
He’s still a person. He still smiles when he sees me, enjoys the things that interest him, and looks so much like me that it hurts. I don’t know what to do. If I get him help, my family loses the only income they have, which is the fraud.
And if I don’t, I have to live with knowing he’s nothing more than a veal calf locked in a room watching the same shows over and over. I’m a parent of four, and my youngest has autism. It doesn’t get identified until they’re about one or two, which is too late to abort in most provinces in Canada. He’s almost five now and wonderful.
One major thing is that your goals change. Instead of hoping they don’t do drugs and study hard, you hope they learn to use the toilet and not smear crap on the walls. He’s brilliant, stubborn, clever, and stubborn. He’s in his own little world a lot, and he’s very happy there.
Seems like a wonderful place, and I’d like to visit sometimes. When he was two, we had an in-home sitter. I came home to find he’d gotten into our medication while she sat watching TV. Luckily, he didn’t eat any, but that was the last day anyone but us watched him.
We’ve been a single-income family for three years now. My wife stays home with him so he gets the attention he needs and can make all his appointments. That affects everyone. Money is tight, getting tighter.
The older kids go without some things and don’t get as much attention. They’re teens, so they don’t really want us around all the time anyway. Hopefully he’ll go to school full-time next year and she can work part-time to get us back to where we were five years ago. The biggest sacrifice has been financial.
The week before Christmas, her car broke down. They fixed it, then called to say the timing belt broke during a test drive. That’s two thousand dollars to fix. Now we’re down to one car for six people.
It’ll be a few interesting months while I save up. But we’re lucky that he’s physically healthy. No prolonged hospital stays. The biggest problem is finding help in our area.
Besides speech therapy and school, there’s nothing available. He could use more, but it’s a two-hour drive twice a week, and that’s not happening. In the end, it’s not a sacrifice.
It’s a privilege to have such a wonderful child.