10 Parents Of Children With Disabilities Reveal Whether Or Not They Regret Having Their Child

May 7, 2018 | No Comments » | Topics: TRUTH

(photo: @derekthomson)

1. I have a 12 yr old with bipolar, adhd, ocd, ied, cd, etc. So mentally ill a.f.

He’s spent multiple times in psychiatric hospitals, the medicines he takes make him feel like shit, they’ve made him fat and his hair fall out. In order to make him compatible with society it takes enough drugs that he is a zombie. He has no personality and no enjoyment. You back off the drugs and he then begins the rapid cycling. But for the few hours at a time he’s not cycling he’s amazing – funny, witty, compassionate, etc. Regardless I love him whole heartedly.

Now…if I knew 13 years ago what I know now, I wouldn’t have had him. Not so much bc it’s hard for me, but bc every fucking day of his life is a struggle for him. He told me once he isn’t living He’s existing. And He’s right.

Also after he was diagnosed we did stop having more children.

 

 

2. I found out during my last pregnancy that my daughter had a severe form of Turner syndrome. She would be born with a heart defect, a kidney defect, and would’ve been mentally retarded among a list of other thing. I was against abortion and wanted to let life play out, so we decided to go through with the pregnancy despite numerous doctors warning us that our daughter would have a terribly tough life. She ended up still born at 25 weeks.

After seeing her, I felt absolutely ashamed – it was so abundantly clear that she was not built for this world. Had she survived, her every moment would’ve been suffering, all while waiting for transplants and procedures just so she could keep suffering. All of that, just so that I could feel better about my choice not to make a hard choice while I was pregnant.

I’m pregnant again now, and have agreed with my husband that if the same thing happened again – we would abort.

It’s easy not to do something like have an abortion. But once that child is born, you (and the child) don’t get a choice. The medical system will do whatever it takes to keep them alive (including prolonging their suffering).

I should’ve stopped her suffering the moment I had the chance. That is the truly noble decision and is way less selfish than allowing my child to suffer just for my own pride. I am sooo thankful that she died!!!!

 

 

3. My 9 year old has autism, and we were told he would never even talk, let alone do all the social things other kids do. We had his birthday party yesterday, and while you’d think he’s only 5 or 6 when he talks, he TALKS. Not only that, he socializes. He’s awkward as fuck about it and tends to just turns tail and wander off when he suddenly needs a break from everything and people, but he does interact.

When he was first diagnosed, I’ll admit that yes, I had some regret. I felt like an awful mother for it, too, then came to terms with the fact that my feelings were NORMAL and I needed to get used to him and everything required for his disability, including therapy 5 days a week, 45 min away in another city.

It took time, but now, no. I do not regret it or him. I’ve learned to take things as they come and cherish all of the milestones my son achieves. After all, they were things everyone said he’d never do!

 

 

4. I have a daughter with autism and epilepsy, she’s 8 years old now. I was 22 when she was born. I did cry a lot when we had her diagnose, because I realized she would be facing SO MANY challenges in all her life. I’m divorced, with shared custody. She spends half the time with her dad and half with me. Our families help whenever they can, but I had to give up my job at the time of the diagnosis, and was fired from the next one, because it’s impossible to work for 8 hours a day when I have to drive 1 hour each way for her to get her therapies. So I’m working part-time now. I don’t regret having her. I love her SO MUCH. Her smile makes my day. She taught me so many things. It is a hard life, but damn, I love her, I love her so much. She has the purest heart and soul. I’m so grateful for having her in my life.

 

 

5. I regret having my 9 year old with autism and oppositional defiance disorder every single day. She is very verbal and can be as sweet as a peach when she gets her way, but doing the hard work of parenting her correctly has been a nightmare.

She was an unwanted pregnancy when I was a dumb 20 year old. I was in a lot of psych meds before I realized I was pregnant that I think messed her brain up. I had taken plan B perfectly like on the instructions the one time I had unprotected sex, I figured that would have been the end of that worry. I didn’t realize I was pregnant until she was about 10 weeks gestation and immediately stopped taking my meds but alas. By the time I could get the money together for an abortion (the closest planned parenthood was a 7 hour drive so no-go there) the pregnancy was too far along. I wish I would have looked into adoption now.

Bio dad has never been in the picture and the first five years were pretty rough but manageable since I had family help and a super supportive husband. Once she started kindergarten she was getting suspended from school constantly for stupid shit like throwing an empty water bottle at the principal or hitting her teacher. Her IEP was essentially worthless and I couldn’t hold down a job or go to school because I had no one to watch her every single week at random times I’d get called to take her home for 2-3 days at a time. So I did what I thought was best and we packed up and moved out of state with her to a much more supportive area with better schools.

We have been here for three years and it’s been hell. Her professional supports – school, in home therapist, the community have all been outstanding but I have no support for myself besides my husband and we are moving back to our home state in three weeks because I’m becoming too ill myself from all of this. She bites, kicks, screams, runs away into traffic, calls us grotesque names when she doesn’t get her way.

Wednesday I had to call the police because she refused to get into the car when it was time to go home and when I was finally able to literally drag her kicking/biting/70lb ass into the car and close it she tried to bust the window open. She took an ambulance ride to the hospital and was a little angel for them when she calmed down and they said she wasn’t a threat and sent her home.

I am very bitter and resentful, I’ve done everything I can for her to give her a good life – she has in home specialists come to teach her coping skills 5 hours every week, she is in one of the best school districts in Pennsylvania, I pay for acting and swimming classes for her but when I sit down and have to discipline her or make her do her homework, I get verbally and physically abused and there’s only so much one person can take when you give-Give-give and get nothing in return. I feel guilty because her baby brother is neurotypical and we have a very strong bond and I love him more but I am becoming more apathetic every day to my toxic feelings towards my daughter.

Almost always I hope that when we move back home that she gets arrested and ends up in juvenile detention so she can see how good she has it at home with me and so I can get a break from her.

 

 

6. Some days I do, however most days I don’t. I would rather that he was “normal” as apposed to not existing at all. Sometimes I envy him, he doesn’t have a care in the world because he doesn’t have the mental capacity to do so. End of the day, fact of the matter is, we can’t go back in time and make changes. We have to accept life. My son will be 20 years old next year, he’s on the spectrum, has a type of dwarfism and epilepsy, unlike a lot of young adults he goes to respite with, he is very much easy to manage. He never throws a tantrum and therefore makes his care givers work a little easier.
As they say “there is always somebody worse off than you”.

 

 

7. I had Rubella (German measles) in the first trimester of my pregnancy. As a result my son was born deaf, with ADHD and is probably on the spectrum, although they didn’t diagnose it often back in the 70’s. As he grew older I realized that he was probably a sociopath as well, although that wasn’t diagnosed either. I started doing my own research and realized I had a child with massive problems and impossible behaviors that no one but me and his school system recognized. Unfortunately they decided that I was making him have the problems, so there was no help there.

I did everything possible to teach him, well…anything, but he never cared to learn. He was horrible to animals (except for his cat) until he realized that it wasn’t good for his own health to act on his impulses. Yes, I beat my kid. Not badly but it had to hurt or it was ignored. Switches that stung worked pretty well. I didn’t want to hurt him, I just wanted him to understand that behaviors have consequences. He refused to learn to sign – the Hellen Keller thing did not work for him. So, he had no language aside from pointing and typical facial expressions and gestures. I had a husband who was an over the road trucker and never home and a mother who refused to take care of herself physically and expected me to do it all. So many stories…

At any rate, when he was 10 I divorced my husband and told him that he had to take custody. He thought I was the problem anyway and did love his kid. Or at least thought he did. He found out pretty fast that the behaviors I described weren’t my imagination. When a string of babysitters quit, he married and moved across the country. Yay, for not having to deal with it any more. I met someone and put myself back together, went to college and got a degree.

One day about ten years after the divorce I got the idiot idea to check up on the kid. I got the stepmom on the phone. She said, god knows what to him. He wanted to come and visit in a few days. When I said that was impossible due to work and that I needed a week to arrange some time off. He apparently literally destroyed his room and beat up the neighbor. She told me never to contact them again. No problem. I changed my name and never tried again.

Well, it’s been thirty years and I did a google search for him. He’s in prison doing 15 to to life for raping a child. She was eleven. He’s 6’6 and a monster. I hope someone shoves a shiv into him so that he never gets out. I’ve worked with disabled children and loved them all. I would have given anything for him to have anything different. It’s hard to take care of a paralyzed child but dealing with one so mentally fucked is impossible. God help any of you who have to do it. You have my greatest respect.

 

 

8. My son has low functioning autism, as well as hyperactivity, various development delays etc.

I regret it every time I walk through the door to him screaming, being aggressive, snatching, and everything else. He’s 5.

He can be the sweetest boy then 10 seconds later screaming the place down, pushing, kicking etc.

Any extra money we have goes on therapy for him. We can’t go on holiday because he can’t handle it.

I hate my life and feel so sorry for his younger sister who will never have friends round, get to go on holiday, or experience a normal childhood – because everything is centred around him.

 

 

9. I have a three year old girl with Down Syndrome. We found out about 18 weeks in-utero, when the ultrasound showed a severe heart defect that would need to be surgically corrected three months after birth. She had a twin who didn’t make it. Amniocentesis confirmed the genetics the OB suspected.

At the time, my wife and I lot going on in our personal lives, major life transition type stuff. Building a home, purchasing a business, pregnant with twins… and all the bad news came extremely fast and left us basically shell shocked. We stayed up talking and crying for a couple weeks, ultimately making the decision to give the kid a chance, and knowing that if she wound up nonverbal, paralyzed, eating through a tube, zero quality of life, that whatever quality of life she had (or lack thereof) would basically be our fault for pushing through a pregnancy that had all the warnings signs of “this could end badly”.

We are three years into this now. I’m telling you, this girl is the goddamn light of my life. She spreads joy everywhere she goes. She waves and blows kisses at strangers. She gives hugs for no particular reason. Everywhere we go, people remember her. She’s walking, running, knows more sign language than I do, and picking up words left and right.

She did have her heart surgery at three months old. The defect was corrected, the surgeons saved both our lives.

I think in a lot of ways, parents hope their kids are going to be stronger in areas of their lives where they are weak. I’m pretty introverted and awkward. I feel like most of my life I’ve been waiting for the other shoe to drop, and when we found out about her, it felt like this was it. I was mostly angry that the shoe dropped on my kid. But now I see how much joy she brings to others, how she has no reservations when walking into a group of kids she doesn’t know, how her default mode is “happy” and how it spreads to others quickly.

Biggest things that have changed: Our life plan is no longer to get the kids to 18 and then we’re free. Our plan is that we’re a family together, and she’ll probably be living with us her entire life, and we have to be ok with that. That took a little adjustment, but honestly at this point that feels like a blessing instead of a curse. The other big adjustment is the idea that one of these days, if we don’t take care of ourselves and plan accordingly, she’s going to be alone with only the state and any surviving relatives to help her out. They say one of the greatest tragedies is when a parent out lives there child. When I think about my future, that is actually the goal here. I’m going to do everything I can to take care of myself and my estate so that my beautiful girl has me around as long as she needs me. It’s my honor and blessing to do it. And hopefully shortly after she puts down her burdens, I’ll be able to put down mine and be satisfied with the lives we led.

 

10. Mom of a 15 yo boy born with Sotos Syndrome, Autism (PDD/NOS), Global Pattern Development Delay, Oppositional Defiance Disorder, ADHD, Sensory Processing Disorder, and a myriad of other cognitive and intellectual disabilities. What does all of that mean? He is a literal giant (no…really…he is medically classified as a giant and is atypical Sotos) who very much wants to be like his same age peers but is very much in his own little world of Playhouse Disney/Disney Jr. and Star Wars. He is a loving, sweet, funny kid until he isn’t and his triggers vary from day to day. Then he becomes violent: physical aggression, property destruction, self-harm (choking, biting, skin picking, nose picking). He is a very smart person who is also extremely manipulative. Whether that manipulation is on purpose, we don’t know. My son is only 1 in 10,000 people in the world with his specific array of diagnosis and 1 of 25 with his genetic makeup. We know of only 1 other peer in the US like him and that young man lives in Michigan. We’ve never reached out to the family but we’ve thought about it.

My son requires 24/7 care. Special schools. Special camps. Meds. Doctors. Because of his size (6’6″ and 340lbs) we have to special order clothing, underwear, pajamas, shoes (size 18 4E), and socks. We have a home care provider to give us breaks. I recently quit working full-time because the boy was having a “crash and burn” cycle which then played a part in my own crash and burn. We are not rich but we work hard. My husband took extra shifts and I went to freelancing. We’ve gotten our son somewhat on track, but on Friday my husband called me in a panic while I was having an afternoon to myself before our daughters track meet in another town 30 min away…our son attacked him and he had to call the police. It was kind of the “leftovers” from a meltdown requiring restraints from the night before. I raced home. LEO’s were absolutely wonderful. My son calmed before they arrived. My poor husband was really upset and scratched up. We have never had to call for police help before. It was a really sad…milestone…in our sons development.

Do I regret having my son? Yes and no.

It breaks my heart to see him struggle. It rips me to shreds to see him want to travel and drive and have friends and be a “cool dude” like he says, but it just isn’t possible (except he is cool AF to me). It is emotionally, physically, mentally, and financially draining. My husband is my 3rd husband and he is amazing. My sons father has nothing to do with him. This lifestyle can RIP relationships apart and that is hard. I don’t have friends. My daughter, who is 15 months younger than her big brother and was an “oops” baby way before we ever knew my son was high needs, suffers at times. We work really hard to give her every opportunity in the world. My parents help with her a lot. She loves her brother but does not have a high tolerance for his bullshit, so in many ways it is a typical brother/sister relationship and the most normal thing in our lives.

I don’t like that everyone struggles. I regret that part. I regret the pain this causes to my son and loved ones.

But my son saved me. I was a real piece of shit human. Not a good wife. Not even a good mom when the kids were little. I had no ambition. No motivation. I was a full blown alcoholic that was barely functioning. I should have been dead, in jail, and all other horrible things…but he saved me. I’ve always known that I am pretty much the only person he has. I’m his human. He needs me. I understand him and know him better than anyone. I have seen people dismiss him and kind of figuratively toss him aside. I don’t really know what my “lightbulb” moment was, but I remember slapping a guy across the face for yelling at my son and calling him a bitch for screaming (he used to be echolalic) and really being mad someone would say that about my son. This was probably 12 years ago. Around the same time I also began to have a real sensitivity to the R word. To this day I partner with Special Olympics and Best Buddies to increase awareness to Spread the Word to End the Word. I was 22 when my son was born. I had a lot of growing up to do that I fought against for a long time. I was a thot before the word existed. Meanwhile I had this kid who needed an adult…and then I had another kid who needed an adult. It took me a while but I grew up. I learned special education, “the system”, doctors, lingo, and have been a fierce advocate of persons with disabilities living a good quality of life. I am NOT a psycho, puzzle piece wielding, warrior mom who is in all of the Facebook groups and area support groups. FUCK. THAT. SHIT. I do things my own way. It helps that I’m a more solitary person by nature to begin with so the isolation that can come with the lifestyle isn’t so bad for me. I’m pretty calm. I advocate strongly. I know my shit. I vaccinate (no, vaccinations did not and do not cause Autism). We don’t do the shit science diets because there is not a diet that is going to cure this and there is not a diet that will make this better. I do homeopathic things for some comfort of my own, but the pseudoscience moms can just keep all of that shit over in their corner and I’ll stay in my lane and that’s that. We DO track his food on MyFitnessPal and watch what he eats and use calories in/calories out for him. He is built like a brick shithouse. He needs a little help when it comes to food intake.

I love my son for what he has done for me – he made me see the world in a different way. He made me compassionate and kind and strong and articulate. He made me a lifelong student. He made me an expert in my kid. He made me be objective and learn how to play devils advocate. He has forced me to be social. He has shown me that other people are good. He has shown me that people who are assholes aren’t worth our time. He has shown me how to laugh and love and care without limits. He has shown me bravery and courage under fire. He has made me an expert in conflict resolution, problem solving, and research. He taught me to ask questions. He has taught me a lot of what I know about being an adult and good human. I’m learning more every day.

I don’t talk about my son a lot to other people, especially on the interwebs. I don’t post to social media much about my son because I believe that whether he understands me trying to preserve his dignity and right to privacy or not, I respect him and want to do that for him. I talk to my husband, care worker, my own therapist, and that’s it. So please pardon my wall of text. It’s been a rough few days with the big guy, but damnit, I love him to pieces. My kids are my world. My son saved me. My daughter did too, in a different way. I literally could not survive without these little people, who I refuse to believe are growing up. I am a young mom (38 with a 15 and 14 yo) but I’m glad for what that has done for me and them and how we’ve kind of come up together.