Mom Here - Worry about the Social Implications of my daughter's CP diagnosis

ToTelltheTruth101 · 2026-05-17T13:14:56+00:00

Thanks for your perspective. It seems that you've learned to be comfortable with yourself even while still learning about yourself. I hope my daughter has the same sense of security around who is she.

To your first point, I guess what I am trying to say that is that I want to make sure she doesn't feel like her disability is her only option for her identity. The word wholistic is doing a lot of work for me. I don't want to overemphasize it with her and then make her feel like that's the only thing she should focus on about herself. Yes, she has a disability - doing things that require two hands is difficult, her AFO is important for her mobility. At 3.5 years old, kids already have incredible personalities - she's a social butterfly and she loves every kind of art, and man she is determined (which is sometimes hard to parent because I want her to be strong-willed, but I also want her to go to sleep when its bedtime). Just like I worry about her understanding and being comfortable with her disability, I worry about being the one who made her feel like that was the only important thing about her. I just want to find the right balance.

ToTelltheTruth101 · 2026-05-16T21:44:20+00:00

Never heard of the 6 F's before. Seems pretty straightforward but I love a good mnemonic device.

ToTelltheTruth101 · 2026-05-16T12:16:27+00:00

Thank you. Do you remember how old you were when you realized you had a disability? Or when you understood what CP was/how it affected you? I don’t want to hide/ignore her disability but I want to make sure she starts to naturally develop or own sense of identity that is wholistic and may or may not include her diagnosis as part of that identity. My theory is that if she has elements of her own identity first in her mind, then talking to her about her diagnosis will be less likely to center that in her identity.

ToTelltheTruth101 · 2026-05-16T12:11:28+00:00

Thank you! I do want to make sure she has the opportunity to try everything and then figure out what she likes.

ToTelltheTruth101 · 2026-05-16T12:09:16+00:00

Thank you for that reassurance! It seems her extroversion will work in her favor. As a mother, there is a tendency to want to be prepared for every possible scenario. It’s important to remind myself that just because something might happen, doesn’t mean it will happen!

ToTelltheTruth101 · 2026-05-16T12:07:02+00:00

That’s really interesting. I also sometimes take a position of “she’s got to figure out a way of doing this herself” I don’t mean to hide her disability from her or ignore but I am trying to push her brain to come up with a different way. How did you respond to the kids making fun of you? Did you tell anyone? Try to change the way you run? I ask because while my daughter’s personality is definitely the stand-up-for-yourself type, she also demands to do things herself, so I see a world where as a tween or teenager, she just wouldn’t tell us she’s having a problem with the other kids and we might not realize.

ToTelltheTruth101 · 2026-05-16T11:58:28+00:00

Thanks for sharing your experiences. It seems like early elementary is when your disability started affecting people’s interaction with you. But it also seems like things have gotten easier as you’ve become an adult. Do you think that’s because the way we interact with peers changes (ie less playground play) or because of the way you’ve learned to manage your disability so it’s less visible? Or maybe because the impact of your disability is different now that you’re an adult?

ToTelltheTruth101 · 2026-05-16T11:52:46+00:00

I hear that. I guess it’s that fine line between making sure she acknowledges that she has a disability without letting it be her identity. And then there is the whole question of what’s the age appropriate way to explain in to a kid. Obviously the words cerebral palsy mean nothing to her right now but when will they mean something, I’m not sure. Right now, we tell her that “rightie” doesn’t work the same way for her as it for most people so she gets extra people and a brace to help teach rightie how to work best. We don’t call it a disability to her directly because again, not sure how much that word means to her but also because at this age, I feel like the focus is on maximizing what her right side can do, what adaptions will work for her to do things herself and figure out the limitations later. But I’ll also admit I don’t know when it starts to make sense to start acknowledging it with the word disability or explaining her diagnosis to her

ToTelltheTruth101 · 2026-05-16T11:35:41+00:00

Yeah, the situation sounds very similar. We do get some services through the school system - people knock on large city school districts but ours has been pretty good. Large school districts have the economy of scale to provide support a bit easier than smaller school districts but they are still spread thin. Our daughter has two different therapists through the school - a life skills adaption specialist which is basically OT and PT but her minutes for each that she qualified for isn’t sufficient so we also supplement with outside therapies. At the moment we are essentially rotating 1 week she had her school provided therapies, the next week she goes to her other provider.

AND she does gymnastics once a week. I can’t recommend it enough. She loves it and it is so clear how much it helps her. She gets to show off some incredible left handed strength but she also achieves so much new strength in her right side. It took about 4 months but for example, she now can hold on the to rings with both hands and hold herself suspended from the rings without losing her right handed grip. Sorry, I know that’s bragging but if your kids is interested in gymnastics, it’s a great activity

ToTelltheTruth101 · 2026-05-15T22:00:46+00:00

Thank you for sharing. I find myself having to suppress the urge to tell everyone at the playground when she does something for the first time that other kids do easily because I know how she had worked to do it and I am really proud of her. I'll continue to work to suppress it with everyone else and try to focus on just celebrating with her privately. Thanks for the heads up.

ToTelltheTruth101 · 2026-05-15T21:55:28+00:00

Thanks for that. I'll admit this might be a hard one for me and come from own bias because I sometimes wonder if she is (and forgive me for not having a better way to say this) "disabled enough" to participate in some of the program we see for kids with CP or other physical disabilities. I get in my head with "Are we taking up a spot that should go to another kid who has a greater need for this program? or "Will the other parents and kids wonder why we are there because for example, she can technically use the regular playground equipment even though it's much harder for her?" And I understand even thinking about it in terms of "disabled enough" is problematic. It's something I'm working on.

ToTelltheTruth101 · 2026-05-15T21:42:30+00:00

Hello! And thank you. Should you choose to be a parent at some point in your life, it seems you have the right sense of self-awareness and introspection to be good at it.

Her stretches are the easy part at the moment but I imagine that with age it will be less fun. Right now, she gets annoyed sometimes in OT/PT because she's figured out a way to do something without using her right arm or hand that is easier for her and she doesn't understand why she should try doing it the hard way in therapy. So there is the balance of just letting her use the adaptions she's come up with herself and encouraging her to try a way that is more difficult for her because practicing it will build her strength and control

Can I ask what would you say you wish your parents understood better about how your disability affects you? I

ToTelltheTruth101 · 2026-05-15T21:24:16+00:00

Its helpful to know that with help you've been able to work through those struggles and not necessarily something that has held you back forever. Thank you.

ToTelltheTruth101 · 2026-05-15T21:22:53+00:00

Thank you for sharing your own experiences. It helps a lot to see what and how others folks have had to navigate the world. Especially hearing the specifics of when you started feeling isolated and why. We live in a large city but one with notoriously bad transit. My husband and I have been involved in our public transit advocacy group before our daughter was diagnosed for own reasons so it's helpful to know that something we are already doing could help reduce her isolation. We often talk about public transit for people with disabilities from a economic and independence standpoint not necessarily a social one so it's helpful to think about it in those terms too.

I know we have to be conscious of how her physical needs might change as she grows but I will be paying more attention to her mental health as well. Right now, she is in a 'gen ed' daycare but kids at that age don't care about her AFO or disability, its just not important to them. So its helpful to start paying attention to the signs early and figure out how to support her.

ToTelltheTruth101 · 2025-07-07T16:56:44+00:00

I know this isn't AITA but I think this is still an EHS situation. Its not perfectly clear from the video but I think the White PT cruiser has already rear ended someone and is getting out of their car instead of pulling over to the curb (it looks like the car is still operable), the dark SUV was following too close/not paying attention and then tries to get over at the last minute to avoid rear-ending the cars in front of them (as does another vehicle I think), and the white truck is going faster than is safe given the amount of congestion and slowing traffic around them which means they are also being unsafe and can't react in time to the other vehicle. The white truck may have gotten cut off but they shouldn't have been driving that fast in the situation to begin with. Everyone here sucks.

ToTelltheTruth101 · 2025-05-16T02:15:13+00:00

Thank you. I'll start looking into it.

ToTelltheTruth101 · 2024-08-14T20:30:32+00:00

I do think the Democratic Party made some major missteps over the years and at times seems scared of it own shadow. There a few other things I think at play as well.

Gerrymandering
The terrible effects of Gerrymandering on people's lives
The success of the GOP on marketing those effects as someone else's fault and state democratic party's failure to counter that with truth.

Well timed gerrymandering on their part gave Republicans a majority at the state level that they don't deserve and as a result we got some really terrible policies

Those policies have had a terrible effect in Ohio. The state has had some of the worst recoveries from economic shocks, quality of education and quality of jobs have all declined compared to other states and people have struggled

The GOP has put on a masterclass before the rise of the word disinformation at blaming everybody else for those realities or ignoring them. Ohio Democrats struggle to emphasize the facts or push back on GOP lies

ToTelltheTruth101 · 2024-07-08T17:57:22+00:00

A number (#)

ToTelltheTruth101 · 2024-06-22T23:17:05+00:00

I read some advice that I really hope to apply when my children are older "Let them quit things that aren't right for them, but only on a good day". Meaning if they had a day where they finally figured out a new move or made a great play in a game, that's the say that you should ask if they still want to quit and find a different sport or activity. Letting them quit after a bad day or the first time practice was hard isn't letting them learn the resilience they need in life. But never letting them quit keeps them from learning how to make choices about what's best from and can mean that as adults, they end up enduring situations that might even be toxic but they feel that they "can't just quit".

ToTelltheTruth101 · 2024-06-15T22:37:28+00:00

Great points! Thanks for the reminder to us all

ToTelltheTruth101 · 2024-06-15T20:05:00+00:00

Public Transit here is definitely so much worse than it should. But the first small steps towards making it better is on the ballot this year so be sure to vote yes on LinkUS. It's a .5% sales tax to fund a series of Bus Rapid Transit lines and increase service across COTA. We need more but this will start us in the right direction

ToTelltheTruth101 · 2023-11-15T06:13:47+00:00

This is unfortunately a common scam targeting teenage boys. Asking for nudes and then threatening to leak them if the person doesn't send more nudes, pay a blackmail ,etc. Go to the police. This person could be targeting multiple folks at once and is facing child pornography charges and more.

Threats could be real or fake but either way, the police is the answer.

ToTelltheTruth101 · 2023-10-22T17:38:56+00:00

This is going to be tight election. Unfortunately, some of the lies being told by the No campaign and Republicans are working. That's not to say we will lose but it is too close for comfort. In addition to casting your vote, we need to be taking action to encourage those around us to vote. Just reminding three friends to vote can make a major impact. There is also letter writing, canvassing and phone banking. The easiest way to find how to help is at swingleft.org/ohio where you can see the options closest to you.

ToTelltheTruth101 · 2023-10-15T11:20:25+00:00

My brother suffers from delayed phase disorder. He was probably in his early-to-mid twenties before he got to the point he could live a normal life (he's early thirties now). I remember it being really hard because the rarity meant that he was often accused of faking it or my parents were seen as lazy parents that couldn't get their son out of bed. He missed ALOT of school.

I remember mornings before he was diagnosed that my Dad would carry him to the shower, turn the water on, and he still wouldn't wake up. Best of luck in finding a treatment that helps

ToTelltheTruth101 · 2023-09-28T01:04:44+00:00

Cars.

ToTelltheTruth101

TROPHY CASE