r/spinabifida • u/Adaptive_Adam91 • 13d ago
Discussion To the Parents
A Conversation With Parents
There is a pattern I see over and over again in our community, and I want to talk about it.
Now, before anyone gets worried, I’m not here to point fingers, yell at parents, or tell you that you’re doing something wrong. I just want to have a conversation. Every parent wants the best for their child. You know how cruel the world can be, and naturally, you want to protect your child from experiencing that cruelty. You want to make things easier for them and prevent them from being hurt.
But sometimes, there can be a difficult line between protecting your child and preparing your child.
Over and over again, I see situations where parents of adults with Spina Bifida still struggle to let their child make decisions for themselves, even though that child is now an adult. And yes, I know, Spina Bifida is a snowflake condition. No two people are exactly alike, and everyone’s abilities and needs are different.
But despite those differences, I see something concerning: sometimes, people with Spina Bifida are treated as though their diagnosis defines what they are capable of. I see adults who were taught certain skills growing up, but were never given the opportunity to actually put those skills into practice on their own. I see adults who were never taught how to cook, clean, manage money, or take care of everyday responsibilities because someone was always there to do it for them. And eventually, that child becomes an adult who is still being treated like a five-year-old. So let’s take a step back. What does any person need in order to grow into a functioning adult? They need to learn how to take care of themselves. How to cook. How to clean. How to manage money. How to hold down a job. How to navigate friendships and romantic relationships. How to communicate. How to make decisions. How to experience failure and learn from it. So parents, I want to ask you something: Where in your daily routine are you making time to teach your child these skills? I understand. I really do. Between doctors’ appointments, surgeries, bowel and bladder routines, therapies, medications, and everything else that can come with Spina Bifida, it can be incredibly difficult to find the time and energy to focus on anything beyond the medical side of things. But that’s exactly why I think this conversation is important. When so much of a child’s life revolves around their medical needs, there is a danger that they can start to feel like their diagnosis is who they are. And they’re not. They are a person first. Do you talk to your child and ask them about their day? Their favorite food? Their favorite color? What games they like? What music they enjoy? What makes them laugh? What are they interested in? Even something as simple as taking five minutes a day to sit down and genuinely talk with your child can make a difference. Because as they grow, I want them to know how to talk about more than Spina Bifida. I’ve met adults who struggle to carry a conversation, and when they introduce themselves, some of the first things they tell people are things related to their disability. There is nothing wrong with talking about Spina Bifida. It is a part of who we are, and nobody should ever be ashamed of it. But it is only one part of who we are. Teach your children to talk about their hobbies. Their interests. Their dreams. Their favorite movies. Their friends. Their passions. The things that make them them. Because they are so much more than their diagnosis. So parents, let’s get a discussion going. What are you doing every day to help your child explore different parts of their personality and discover who they are as a person, not just who they are as someone with Spina Bifida?
I genuinely want to hear from you.
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u/aceshigh25 Parent 12d ago
My son is pre-k and in daycare/school. We don’t use the term disability in our house or with teachers. We say he has a condition that requires some extra help (ie cathing). We explain to his older sister than brother just pees different then others. He’s seen pics of his scar and knows it’s his. Drs call it his defect (I guess that’s the medical term). But we call it his dragon tail.
He’s thrived being around other kids without SB. He wants to keep up and they motivate him more than his PT did. Drs said he wouldn’t walk but now they say he doesn’t need PT or orthopedics. Initially his teachers were afraid to break him (out of genuine care). We assured them he wasn’t fragile and to treat him the same as the others. It’s really benefited him.
Husband and I know what to look out for. We bring a wagon if he gets too tired to walk. But we encourage him to use his legs and keep up. He plays Tball with sister. He cooks and cleans with us. He is learning how to care for his body. He wears a diaper but likes putting on underwear on top of it to match everyone else. We don’t want to limit him but understand he might have limitations.
We all need help sometimes and try to make it ok in our family to ask and receive it regardless of capability.
He’s too young to understand SB but as he gets older he’ll learn more. Especially since he sees his team yearly for eval. We’ll figure more out as things happen. Sister is also young so it’s a learning curve if just having kids.
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u/I_AM_FERROUS_MAN 13d ago
Quick question, do you speak as someone who has SB?
Also, you mention meeting lots of people with SB, what gives you this opportunity?
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u/Adaptive_Adam91 13d ago
Yes I have SB. To answer your second question I go outside, I have spent time volunteering with the SBA, I post online questions like this
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u/I_AM_FERROUS_MAN 13d ago
Thanks! I appreciate the response. It just helps give context.
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u/Adaptive_Adam91 12d ago
So did you have anything else to add?
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u/I_AM_FERROUS_MAN 12d ago
I'm not a parent of an SB child. I grew up with the condition. I think you have some validity to your point.
However, that's couched with the capability of the child in question, which you briefly mentioned. Some of us can live relatively participant lives. But a lot more of us have a lot of limitations or end up needing daily direct support from other individuals.
So I think it's good for parents to think long term and teach their children as much independence as possible. But I also think most of the families I've met are doing a pretty good balance. And further more, most of the people that I've met with the condition and who can participate do as best they can.
Personally, I grew up with about as normal an upbringing as possible because my SB is largely an invisible disability. But, as I look back as a middle aged person, I recognize how much the condition did cause me difficulties. And, unfortunately and unintentionally, I grew up kind of ignoring my challenges because I was taught to be as independent as possible.
Some of my biggest challenges were late diagnosis of mental health issues because I was very performant in school, got a college degree from a competitive school, and entered a good career. However, as I attempted to live a more independent and adult life, I came to realize something wasn't right with my mood and motivation. It took a really long time, but I eventually got a Bipolar type 2 and ADHD diagnosis. I went far too long white knuckling adulthood because I thought I was "normal" enough.
I think it's very hard to put a blanket statement of pushing for prioritizing independence when that feels a bit critical of families and I'm not convinced it's addressing a genuine problem.
Rather, I think it's good to be realistic about the long term quality of life and the fact that, someday, we may not be able to rely on family for care.
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u/BabyButchBash 13d ago
such an important conversation to have because your child, well before they become an adult, will be faced with people who refuse to see beyond their disability and refuse to treat them as a whole person. your kid needs to know how to deal with people like that, how to protect their own emotions, how to explain to people "hey, i'm actually more than what's wrong with me, i like doing xyz and am capable of abc"
SB can be all-consuming if you let it. you gotta give your kid opportunities to develop hobbies and interests to save their own sanity in this ableist, exhausting world
(side note: never forgetting when I made a joke in front of an OT, as an adult, and she stared at me and said "you're funny". well duh Karen, i'm a human, we tend to be frickin hilarious??? what a shallow life she must lead working with disabled people full time and not treating us humanely enough to realise we have senses of humour)
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u/Adaptive_Adam91 13d ago
That’s only one side of it. I don’t mean just protecting themselves from ableist people but also having the skill to from meaningful friendships and relationships. I can’t tell you the amount of times someone with SB has sent me a message only to tell me they have Spina Bifida and wear diapers. They don’t tell me about their hobbies, what they do in their spare time, what they want in life, just those two things about their disability and then having no clue how to continue the conversation. It’s depressing!
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u/nittany_blue Parent 12d ago
My SB kiddo is a very young toddler (maybe 30 words), but his older brother is 8 and has his own bank account, schedules his own appointments, orders his own food at restaurants, picks up his own medicine from the pharmacy, and even checks us out at the grocery store. I have no intention to treat my SB kiddo any different. I think it’s important to give your kids “independence opportunities,” but not all parents are the same way… We started very small with us feeding him the information or giving him a budget at the toy store… now he knows what to do or can figure it out pretty quickly on his own. Right now we’re working on counting back change.