The other day, there was a question on reddit, “What’s it like to have a child you don’t want?”
One of the answers in the highly liked responses was this –
floralsquid.
“I’ll answer under a small number because the main number will show who I am. I will be very frank.
My pregnancy was perfect. I was super cautious, took prenatal vitamins every day, never drank alcohol, if someone smoked near me, I walked away, etc etc.
My child is a severe special needs child. She is autistic, on the severe end of the spectrum, “holistic developmental delay”, which is a nice way of calling it “intellectual disability”. She is six years old, but is just now learning to urinate and defecate on her own. She doesn’t speak, but thankfully understands simple commands. She screams off and on for hours every day, and when she’s not screaming, she makes noise. She doesn’t interact with people like a normal child and treats others more like inanimate objects – no attachment, no emotion. She doesn’t interact with me, except to pull me over to the fridge to get her Food or hand me her toys to fix.
I don’t feel like a mom, I feel like a caregiver. I got little joy out of caring for her, and I was always tired and exhausted. The new crown Epidemic destroyed what little sanity I had left because school was closed and I didn’t even have a moment to breathe.
It sounded absolutely horrible, which is why I went with the trumpet. Raising her is not the same as raising a normal child. You can raise a child to be a decent adult – you teach them manners, respect, Education, and kindness, and you want them to grow up to make friends, do well in school, and go on to have a fulfilling Life. And raising her felt like I was raising a troublesome and difficult pet, and one that would never evolve into a more advanced existence.
For me, I just keep her alive – I keep her fed, clothed, safe, and happy. It feels like I’ve been caring for a baby for the last six years. Her progress has been very slow and very small. I hope that by the Time she’s in her twenties, we might be able to have a simple conversation or two, or she’ll be able to focus on a movie. I still talk to her and play with her, but it’s really discouraging to not get anything back for years. One of the few connections we were able to make was when I snuggled with her on the couch while she played with her tablet. She loves toys, and simple little games on the tablet, so I bought her lots of toys and lots of games, hoping that they would keep her satisfied and focused so she wouldn’t scream or hit herself.
I see kids much younger than her having big conversations with their Parents and I’m jealous. I see kids telling their parents that they want a burger for lunch, or talking about fun things they want to do, or whatever. I can’t even imagine how much easier my life would be if she could communicate with me in such a simple way.
Everything is just so hard. I took her to the playground and the other kids asked her why she wasn’t talking or playing with them (this was before the new crown epidemic). We went grocery shopping and she had a complete meltdown and we had to abandon the shopping cart. We went out to eat and she couldn’t sit still and wanted to get up and run around the restaurant, so we had to leave. She grew bigger and taller and harder to manage.
She would hit herself and others. Sometimes she would smear her poop on the wall. When she gets frustrated, she bumps her head against walls and furniture (which is common, multiple times a day). A few weeks ago, she broke a window with her head and I was scared to death thinking she was going to need several stitches. But luckily, nothing happened to her except for a scrape on her forehead. I don’t know how I’m going to manage her when she hits puberty and has the same block size as me. I don’t like to think about it.
If I had known my life would be like this, I would not have had her. When I got pregnant, my husband and I agreed that if we found out that the fetus would have Down syndrome or other special needs issues, we would abort.
However, autism cannot be detected during pregnancy.
My husband and I are 20 years older. We were overweight from overeating under stress. We were always stressed and we couldn’t stop her from self-harming every time she got herself into a concussion. We are sleep deprived and have no sex life. Our brains fry with screaming and constant noise every day. We fought with each other and were grumpy. We are an empty shell of the personalities we once had that no longer exist. Imagine having a monkey on your back 24 hours a day screaming and beating you up. It would break anyone.
We have been going to therapy once a week for several years. In therapy, I broke down at least once a month.
I never thought we would have a special needs child. We have no Family history and as I mentioned before, I took very careful care of myself when I was pregnant. We were prepared before we planned to have a child, and my husband and I waited until we were financially stable to have her. We didn’t do anything wrong. We had wanted more children, but have now decided not to have any more because of the stress. I feel sad when I think about “how things could have been”. I keep thinking about what my life would have been like if she had been a normal, normal child.
If you want to understand parents raising a special needs child, watch the movie “Vivarium”. It’s about a couple trapped in a bizarre suburb they can’t escape and forced to raise a strange child-like looking alien being until they die of exhaustion. It’s an alien monster movie that’s supposed to be pure sci-fi, but for me, it’s the most realistic movie I’ve ever seen.
But even after all that, I love her and I wouldn’t put her in a care center or foster Home (I’d worry like hell that she’d be neglected or abused). When she’s an adult, we’ll either turn the basement into her living space and hire a helper to take care of her, or we’ll put her in an adult special needs home and visit her often to make sure she’s okay. I just hate having to live like this. None of us should have to live like this.
If you see parents with special needs kids at places like the mall, please give them a little patience and please be kind to them.
This reply is about a nightmare that “can happen to you if you want a child”.
Anyone can give birth to a child with a disability that can’t take care of itself for life. It’s not something that can be 100% prevented by “being prepared”. Considering family history, maternity tests, and genetic testing can reduce some of the risks. But there are still people who can be hit with a bomb without warning, and then the entire family’s life is blown apart.
Why should a woman with a disability who is likely to be sexually unaware be “married off” unwillingly? And be prepared for the child she is about to have – even though she may not be able to care for that child at all.
Because today’s society does not provide universally accessible, life-long care for people who are unable to care for themselves, and can continue to do so until they die. So the reality is that the caregiver has only a few options – to let him or her “die of natural causes” in neglect; to care for him or her until he or she collapses and then commits suicide together; to care for him or her until he or she dies of old age and then use property or other means to entrust care to someone else; or, in the case of a woman, to Use her residual sexual and reproductive value in exchange for a caregiver, and if you are lucky enough to produce an offspring of normal intelligence, you will have a caregiver for the rest of your life.
Even if you don’t want children, such a nightmare can happen to you. You have other family members who may also be disabled by illness due to old age.
Again, society today does not provide universally accessible, life-long care that lasts until death for people who are unable to care for themselves for life. Caring for one incapacitated person is enough to bring down one or two people in a small family. Financially, physically and mentally, all can quickly collapse.
Long-term care for people is very difficult work. The care of human young is difficult enough. The difficulty of caring for a deaf and demented adult is even more hellish.
It’s not something that can be accomplished by a small family, or one or two family members, to hold the bottom of the barrel.
What exactly should be done? The development of robotic caregiving technology, a community-based mutual aid system, professionals who can come to the home on a regular basis, a volunteer system that stores “care hours” (and withdraws them when needed), and a system of underwriting for people with disabilities and family caregivers… …
None of the above is easy. Pushing a person who cannot care for himself or herself entirely to a family to make his or her own way is, of course, the easiest and least expensive way to do it. However, if this is done, let’s not blame the fertility rate for not being able to rise.
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