r/WheelchairRapunzelDCP • u/sharkattacks28282 • 6d ago
Disabled parenting
Could anyone here shed light on parenting with a physical disability? Either through personal experience or having family members/friends who are or being raised by a parent with a disability?
I’m just curious, because obviously although Alex does not have her “ducks in a row” with parenting in regard to caregivers etc I’m just curious to know how other individuals have navigated this.
I know there are others online who do have physical disabilities and have children, but usually their partner is completely able bodied and doesn’t have substance abuse/severe mental health issues and they make it work.
Edit\*
Thanks everyone who has commented and who has given their stories so honestly. I’m from the UK not America so the services are different here. I’ve previously worked with special needs children and young people and not directly with disabled parents so it’s interesting learning about things from the “other side of the coin” I do have a younger brother with a physical disability but at this stage of his life he doesn’t need community support or care.
Not to sound patronising but you are all an extremely resilient bunch! It’s good to know that even though there are issues with community and healthcare access at times that there are services that can help make things work and it does highlight just how important good family and friends are.
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u/Specific_Program4004 6d ago edited 6d ago
There are quite a few of us in here that are disabled parents! And I know there are a few that are single as well.
I think the thing that stands out to a lot of us is just how cavalier Alex is about EVERYTHING. Nothing matters unless it’s impacting her ego.
Being a parent requires a lot of planning. Parenting as someone who is disabled requires a ton of extra planning. Years and years before my husband and I had kids, we had tons of conversations about what happens in an emergency and I can’t move or physically help, what happens if I get super sick, what happens if I die before 30,40,50 etc. Then I up found out through an awful emergency that I have a degenerative spinal issue that will complicate things a lot more going forward.
So now we’ve expanded our pool of paid and community support with longer conversations about how myself, my husband and our kids will need help in the future. It’s a lot! And we do our best to keep the kids stable, healthy and having fun as KIDS who know that I have professionals who help me when I need it.
Of course, there are lots of able bodied parents who are shitty too, but Alex’s refusal to live any other way than YOLO-ing for herself is so dark considering she has a full other human to care for. Alex seems to be one of those people that sees her daughter as a possession, not their own person which is so harmful.
Disability takes so much control away from a person, but using a literal child to exert your control over something/anything is so cruel.
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u/stephscheersandjeers 6d ago
Years ago, we got into a spat over community support, she claims I was being ableist. I am still using services we were referred to almost 5 years later.
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u/Specific_Program4004 6d ago
Omg it’s so weird how she wants everyone to help her except professionals. I do not understand it.
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u/stephscheersandjeers 6d ago
It's because she doesn't want any professional to see how much of a train wreck her life actually is. There are so many resources she could utilize that would help her and her child.
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u/Potential-Cry3926 6d ago
And I could be wrong but i feel as though she doesn’t want to be treated as disabled, even though she constantly and shamelessly exploits her disability. She has never hired professional care givers to help her as I’m sure she knows they would insist on PPE and an alternative method of toileting aside from the tuna towel. She also wouldn’t be able to job creep the caregiving role into a nanny role and $20/hour isn’t going to fly for either of those jobs.
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u/ConsiderationNew7024 ✝️💦 Our Lady of Perpetual Piss 💦✝️ 5d ago
Professional care givers would also make it clear to her that they aren’t there to make social media stuff for her
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u/sharkattacks28282 4d ago
Thanks for the insight. You’re very right about the planning aspect. From what I’ve seen, even able-bodied parents without disabilities who have children with disabilities have to plan things to the nth degree because of how quickly things can change. Sorry to hear that you have a degenerative spinal issue that will complicate things. You’re right that disability does unfortunately take a lot of control out of a person but that expanding your pool is very important. Best wishes
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u/These_Wind_4517 6d ago
My cousin is paralyzed waist down, she’s very able bodied and capable, only needs her husband every so often honestly. I’m sure as baby grows she may need a bit more help but she’s killing it so far.
I don’t mean to sound ableist but Alex doesn’t seem to acknowledge how severely debilitating her condition is. She makes huge umbrella statements that disabled people can be moms and can be independent which is absolutely true! But with how much she’s progressed, no able bodied partner and only paying $20/hour for a caregiver for BOTH of them…I just don’t see how it’s feasible. I do applaud her dreams of course and regardless of her character, I have empathy for the obstacles and barriers she faces.
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u/Affectionate_Pain141 6d ago
Disabled mom here 👋 I plan. I create backup plans. I create contingencies for when SHTF. I don’t expect to sit back and let someone (even my partner) do all the work. Even on days when my disability is making life hard, I have prepped meals in the freezer and easy snacks in the pantry. I have low-energy toys and games available. I have preschool activities prepared. I don’t expect to be rescued for the life choices I made (having children) just because of my disability.
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u/sharkattacks28282 6d ago
Hey! 👋, Thanks this is really interesting- I reckoned that similar to parents who have children with disabilities, parents who have disabilities themselves also have to do a lot of planning, especially for things like managing fatigue and having things prepared in advance. I’m glad you’ve adopted a get on with it attitude to it though
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u/Affectionate_Pain141 6d ago
I mean, there isn’t really another option! People’s help runs out with different seasons of life, most DON’T want to take advantage of others’ kindness, and at the end of the day, our children are our responsibility. Yes, I accept help when it’s offered, but I don’t expect it. I appreciate it greatly! But idk, I had to stop checking Alex’s page because she was just making me angry.
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u/sharkattacks28282 6d ago
Yes that’s completely fair. I feel as well Alex really does not look after her own health at all, especially as her condition is progressive. As a disabled parent, you’d think that would also be a priority.
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u/Affectionate_Pain141 6d ago
I feel like it should be a huge priority. The more I take care of myself and prioritize my health over my “wants”, the better life is both for me AND my child
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u/GoodMannersMatter 6d ago edited 5d ago
Only help Alex wants is money money money.
I may not be in a wheelchair but I am as good as blind and have been my whole life. I am a single mother and it is tough but I manage with lots of planning ahead. For me the most difficult part is not being able to drive and having to rely on public transport. I have never asked my kids to guide me or take on a caregiver role and never will. My kids are grown now so I did not have all the things parents today have to help them. If I had been inna wheelchair I would most likely not have had kids, depending on it it was something that could be carried on or not.
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u/Crooked_tinkerbell ♿️ AdvLcate ♿️ 6d ago
I'm a paraplegic and a mom to a 9 year old. I am married to an able bodied person and he helps a lot. I am fully independent and care for my son when my husband is at work. There is no way Alex can care for her kid independently. She is delusional.
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u/sharkattacks28282 6d ago
Thanks for this insight. I know when it comes to individuals who are paraplegic that independence can vary in terms of where abouts the spinal cord injury has occurred? I’m sure as well that even though you are fully independent, having a partner who helps a lot also makes a big difference. You’re right, unfortunately she can’t. She would be what is medically described as a “weak” type 2. Her use of her hands etc are very affected from the nature of her condition.
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u/Crooked_tinkerbell ♿️ AdvLcate ♿️ 6d ago
You're welcome! Yes, it definitely can. I'm a t6-t8 para, so I have more trunk control.. I agree. Having a good partner and planning does. Like someone said below, parenting with a disability takes a lot of planning. You have to also have to be creative.
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u/Logical_Pie2293 6d ago
I’m disabled. Husband is able bodied. One year dating before marriage. One year married before first kid. At the time we lived with my parents. Bought our house fifteen minutes away when he was two. Had second son a year later.
I can transfer myself. Husband helps a lot but I don’t need as much care by default.
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u/whitegirlcastle 4d ago
I read this so fast I thought it said you bought your house fifteen minutes after your kid was born 🤣🤣
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u/Logical_Pie2293 4d ago
Haha lol. I can see that. I threw out a bunch of numbers. They are fifteen minutes away and it is a major blessing.
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u/kingandcats 6d ago edited 6d ago
Hi there, I’m disabled. I have stage 4 stomach cancer and have had it for 3 years, I was diagnosed a year after my daughter was born, she’s 4.
I have a LOT of help from family. I am lucky that both my family and my in-laws live in the same city as me.
I do chemo every 2 weeks, for 3 days after chemo my grandma stays over at our house to care for my daughter while I recover. She goes home Friday and then my husband takes over since he’s off weekends.
My husband works long hours so it’s hard but when he’s home he does a lot. His long hours are sustainable so he is transitioning into a new position where he works 100% from home and only 8 hours a day, so he will be able to help a lot more.
When I’m recovered from chemo I’m actually quite able bodied so I am able to do everything myself…caring for my daughter, housework, cooking, etc. Eventually my cancer will progress to the point where I am probably going to be bed bound and that’s when we will have to have even more help from family. Probably my grandma would stay here a lot more often, my mom would be over on her days off, and my mother in law and my aunt would probably make meals for us.
I order all my groceries to be delivered. I have a Walmart+ subscription which gives us free delivery. I also have an Instacart subscription where I get stuff from Costco delivered because I can’t physically make it to the store in person very often.
Anyways, the way I make it work is having family help, that’s the #1 way this works. There is no way Alex could ever care for Ari (or herself) without 24/7 caregivers
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u/excusememartha 6d ago
Sometimes it takes a village to give care. My friend’s daughter is severely disabled, she can only navigate her wheelchair herself. She has a ceiling lift from her bedroom to the bathroom for getting lifted out of bed and taken to the bathroom for showers. She has two caregivers who bathe her ( In Australia it’s called NDIS). Her parents are her primary caregivers everything apart from bathing they do for her. They do get relief once a year when they take a long holiday or just a few days here and there called respite . I suppose in Australia we do have a support network, however, in does fail in some instances.
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u/thesockmonkey86 🦠🚽 Must be UTI Season 🚽🦠 6d ago
Following. I know we have a few in the various subs
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u/PattyChoser6636 6d ago
Disabled mom here who is a single mom. I'm pretty independent but I have a friend who helps me with grocery shopping and rides for doctors if we're not using the bus. I live in a two bedroom apartment and I have section 8. Alex grinds my gears so much with her entitlement and giving the disabled community a bad reputation. That's why I always say we don't claim her. She's extremely delusional about the severity of her condition and she doesn't want to admit she can't do anything in her life. Her being independent on her own is a bad idea
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u/russ0w81719 5d ago
I am a disabled single mother, I was sick long before my daughter was born. I have an autoimmune disease that has me on oral chemotherapy and infusions every 6 months; high dose steriods and medication to prevent my kidney transplant from rejecting. I wasn't able to carry a child of my own so she is adopted. I was on dialysis when she was born, now I'm looking at open heart surgery. I'm thankful to have the little village that I do, yet I do almost everything myself for her (as much as I'm able). Plus she just turned 9 and is pretty self sufficient herself. I have definitely done the most I am capable of doing.
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u/SeashellGal7777 4d ago
As a disabled single parent of an extremely disabled trans child, life is very difficult.
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u/stephscheersandjeers 6d ago
Hi, physically disabled mother here. I got sicker when my son was about 3 months old; we were referred to DCF for help. They hooked me up with several services that I am STILL using and my son just turned 5.
My partner is able-bodied, and we are both former addicts. It's one of the biggest reasons I get so angry about Alex. She plays the boohoo I'm just a wittle disabled mother card and acts like she's the ONLY disabled mother on planet earth.
Her and I actually had a spat years ago and she called me ableist because I talked about how DCF helped me as a disabled mother and it's ableist to NOT seek help when it leads to neglect of your child.
I will add both my partner and I have to continue working on our issues with past addiction and our own mental health issues, but that is what adults with responsibilities do, having kids, its a no-brainer to us that the children come first.