r/CerebralPalsy

So I don’t think I have been nailing it with my daughter and would love any feedback from the community.

My daughter is 10. She’s fucking great. I am clearly biased, but I am not wrong. She was injured at birth. I always knew there was something physically different about her, but it was subtle and only on her right side and mostly with her leg. She was finally diagnosed when she was six. Everyone says it is such a mild case even pediatric neurologists at UCSF. But there was damage to her brain on the MRI.

She plays soccer on a team still (but that probably will end soon because of physical differences), she rides a bike (but slowly), she skis with us and has become pretty decent solid blue squares and is in love with riding horses. I do stretching, reflex work, and strength stuff with her almost everyday she likes it and loves seeing herself improve. She does her best when doing a thing which will make her successful in life.

She’s a funny goofy kid when she feels comfortable and confident but she is reserved at school. She’s gets along with everyone but I don’t think she feels confident putting herself out there. She prefers to be with one friend she trusts over a group. I think she feels deep down self conscious and different. I know she wishes she was like everyone else. She comes home very tired from school. She has some slight reading fluency challenges but it only comes up slightly below average in state testing. She’s great at Math and Science. We had to really advocate for her to get extra help in school because even the things she struggles with are just about average.

I think I have been screwing up though. We don’t ignore it, but we just treat it as a challenge. I don’t think we are open enough about what she deals with everyday at all times and will forever. Honestly if we weren’t diligent no one would have ever diagnosed her. We don’t use the word disabled or disability. I am worried not being open enough about it or something makes her feel she needs to hide it or some other negative feeling.

I guess any advice? From your experience how can I helpfully change the conversation to help her manage living w this forever and feel more confident in herself. How can I let her know I’ve been trying to be helpful but in the wrong way and I am sorry.

Hoping to learn from all of you. Sorry for being long winded. I don’t expect answers to everything or even any of it. I just wanted to give enough context to learn to do better.

Hi! I (22f) am considering getting a dog. I have spastic diplegia and grew up with Goldendoodles. Unfortunately. My 40 lb doodle (family dog) pulls the leash and I can’t walk her on my own. Do you guys have any recommendations/dogs that have been good for owners living independently with Cerebral Palsy?

I'm looking for gift ideas for my son. He is 10 and is severely handicapped when it comes to motoric skills. He has cerebral palsey and CVI and cannot sit or keep his head up without support. Due to the very limited motoric skills I find it difficult to find toys for him that keep him engaged.

He loves watching Bluey and Pokemon and understands everything that is happening around him and on television and laughs about the jokes and things that happen. So his intelligence seems to be developing with his age.

Are there any toys, be it sensory or other that have been successful for you?

My son has been diagnosed with PVL since last year and has just received a CP diagnosis at 20 months old. I'm just looking to hear some positive stories from other parents or from people with CP, or when they started hitting milestones.

He isn't sitting, walking, talking, or eating people food yet. We've pretty much hit a plateau on his progress for the last several months and I'm just really struggling to deal.

Writing this as I’m getting a pedicure lol. I just feel like this nail tech doesn’t get that I can’t just relax my muscle and they’re getting fed up. But like, what am I supposed to do? Just not get beauty services?

I’m tbh really disappointed. I carved time out of my really busy week (finals time/graduating next week) to try out a new nail salon and indulge in some self care. And instead, I’m sitting here not even able to enjoy this thing I usually love.

Anyone else have a similar experience with beauty industry services people (hairdressers, makeup artists, etc)?

A lot of Autistic people take a neurodiversity approach wherein even if their Autism is a disability (as is part of the diagnostic criteria) they prefer an approach of behavioral health supports combined with social environment modifications (biopsychosocial or social model) and they see their Autism as part of their identity. As a person with mild to moderate cerebral palsy (and severe anxiety but I see that as a disorder in need of curing) I see the ways I adapt, the tools I used the routines I have developed around my access needs and the interests I have developed from activities I have to do to manage living with cerebral palsy such as pilates and lifting as part of what shapes me. I have also made many friends in disability spaces. as such, I take a neurodiversity affirming approach to my CP, a view which has been influenced in part by my Autistic friends' perspective. As such, I am curious: If you are both Autistic and have cerebral palsy do you see both of your conditions as pieces of who you are or just your Autism? Do you see neither condition or both as a part of you? Thank you!

38F here. Mild spastic hemiplegia. I walked with no devices for most of my life, and in 2019 I started using a cane to walk back and forth to work, because I had to cross train tracks.

When Covid hit and I stopped going out so much and lost a ton of endurance, my walking really suffered.

Fast forward to now, I can walk around in the house mostly okay, but I can't go outside on my own. If there's any open space on my left side (I use the cane on my right), I panic and my legs clamp up.

For the past 6 months or so I've been taking Baclofen, and I'm in PT again for the first time since I was a teenager. I'm doing my stretches every day and I just feel like I'm getting worse. I clamp up in open spaces even more than usual, and even inside I'm having trouble bringing my tea from the kitchen to my desk without doing little maneuvers. I've always been able to just carry a mug.

It's frustrating and I'm scared and I hate it. I'm trying so hard to get better and I feel like I'm just getting worse.

I know that these things take time and I can't expect overnight results, but I didn't expect to be getting worse. My therapist had me use a rollator today, and I hated how much easier it was than walking with the cane. I don't want to have to use a rollator, because it feels so much more bulky, and it seems like I'll never be able to use public transit again.

Thanks for listening to this rant. Just getting it off my chest to people who understand.

I want to hear the highlight of peoples week! Ive just joined this group and I want to have a lifting post. It can be you made a batch of cookies, for the first time. You watched a great movie, fell in love. I’ll start. I managed to get my skink to eat something!

ok hi everyone i am a 38 year old male with cerebral palsy since birth, was wondering peoples thoughts on this, when i walk i think ok this is not bad, but when i see myself on a ring camera i myself even think wow thats rough looking, meaning the way i walk, like it looks more rough, maybe it's just me though!.

Hi all,

My whole life I've never been given nitrous Oxide (laughing gas) during a dental appointment because of my CP.

Is this common?

I have a pretty mild form of cerebral palsy, but lately I have found it harder to use stairs due to poor balance (and it is mostly a mind over matter thing, but sometimes my brain just can’t do stairs even if I physically can). I’m fine with a railing of course but if stairs are unfamiliar sometimes I feel I’d rather take a new route.

All that being said, I’m starting a new job in August and meeting with one of the bosses tomorrow. To keep a long story short, the building is quite old and I will be living in that building (which is a great no-commute option for me), and the stairwells are all rather steep/old and some old staircases only have stone steps with carved-in railings on either side that are definitely not AODA compliant. My main issue is that I know I’m going to find it difficult to navigate the building, especially at the beginning. How can I find a way to ask to have a room that is more accessible (at least to the outside) while still being professional and not make it sound like I cannot do my job? There are a number of other related things that I will have issue with, like laundry or getting to meals on time, if the stairwells are not something I can get used to.

Hello I cerebral palsy I am 20 years old. I wouldn’t say I’m wheelchair bound and I’m pretty independent however I’ve been doing research and having cerebral palsy get miserable, the older you get and I was wondering is this true and also do we die younger?

hi! I’m 24 with GMFCS 2/MACS 2 (mild/mild to moderate) spastic diplegia and spastic left monoplegia. I walk on my toes unless I’m wearing inserts or specific shoes and recently I’ve been having an increasingly intense dull ache around the base of my big toe. my physiotherapist has no idea what’s causing it. has anyone here dealt with a similar ache? What caused it and what did you do about it? all my other pain is well managed even though it is one of the medical model things I hate about cerebral palsy.

Hey guys I was wondering what the chances of me having a family are im (20M) a wheelchair user but not bound have an associates in graphic media design and working on my bachelors in both it and communications and I also work a part-time job however I am pretty independent. I still struggle with some things cutting my toenails. I can’t drive. And I struggle to make a bed and do laundry. i’m working on these things but I also want kids so I know there’s a bit of a clock there. I was wondering what people experience was with this.

Hi, I literally just joined Reddit to make this post and be on this subreddit!

I’m (19F), and I’ve had spastic cerebral palsy my whole life, and I was really surprised to see this subreddit. I didn’t realize that there was a community for people like me, and that makes me really happy, but that’s not what this post is about.

So I’ve had a really mild case of cerebral palsy, as other people say, especially my family, and they say I should be really, really grateful because it could be much more impactful on my life, and don’t get me wrong. I am, but it’s still really hard to deal with, especially because I feel like none of them really understand what it’s like to be disabled from the moment you’re born. I’m smart. I’m in college. I was at the top of my high school class. I have hobbies; I make friends, and you can’t tell. I have a disability from the outside, but it’s still really tough living with this, I guess. Having to jump through 19 hurdles just to do something that, like, a regular teenager could do in an hour probably.

So for all the older people here, how do you get through these tough years of early adulthood, learning how to live with yourself and learning how to work with what you have? I see all these able-bodied people around me, and it kind of feels like I’m just lacking; even if they can’t tell, it feels like I’m messing up. I want to do more, but trying to get a job that doesn’t have me fighting for transportation is hard, and learning how to drive is even harder. Is there some magical advice for you to give for me to come to peace with myself, for me to be proud of where I’ve gotten to? I don’t know if this makes sense.

If you read this, thanks for reading!

Hi everyone,

I've always had a bad memory all my life. I didn't notice it too much as a kid (probably because I didn't know what normal was) but as I grew up I realised my ability to recall was much poorer than other kids. I had an EdPsych assessment and they found a particular problem with recalling numbers (number sequences for example).

This made revision really difficult because I just couldn't commit things to memory. I could read and understand something, feel like I'd leant it and then within a relatively short time it was gone, or at least a very vague jumbled memory. This could range from a few mins to a few hours but it was gone.

I'm back at uni in my 30s retraining for a new career and I'm really struggling with what feels like a brain that totally incapable of storing any new information. I use flashcards which do sometimes help but it gets to the point where within a matter of 30 sec I've forgotten the answer to a card I've just looked at.

I have been diagnosed with inattentive ADHD recently and am now on medication for that. It has improved my mood and I'm certainly not exhausted like I used to be but it has done little or nothing for my memory or my tendancy to procrastinate.

I've always assumed it was down to my CP and being essentially brain-damaged from birth but I just wondered if anyone else has a similar experience and if you managed to find the magic solution to getting a normal memory? Thanks!!

I (25m) am a full time wheelchair user with quad cerebral palsy that mostly affects my legs but also my arms and slightly in my speech. As i have entered my mid 20s, I have noticed that I am finding out more things that I feel like I should have been told when I was younger. For example, I just found out that my acid reflux is most likely caused by my cerebral palsy. It got me thinking,'what is something you wish you knew when you were younger? Or is there any advice you would give to your younger self? I don't know any people with cerebral palsy that are older than me, so I'm really just looking for some general wisdom.

Lately I have been experiencing this pop that seems to be coming from my ankle or the lower side of my foot. I don’t know from where it’s coming because it doesn’t even hurt, but it makes me feel like I’m probably walking on a loose tendon or a small fracture. Any similar experience?

I’m currently in the hospital. About a week ago, I had dangerously high blood pressure from autonomic dysreflexia, and now I’m dealing with a serious bowel impaction. I’m going down for a procedure today, and honestly, I’m pretty scared.

We’ve tried everything—laxatives, GoLYTELY, digital stimulation—and nothing has worked. It’s supposed to start as a colonoscopy, but I have a feeling it could turn into surgery.

I’ve also suddenly lost control of my anal sphincter, and my gut motility is extremely low at this point. More than anything, I just want to feel better. I don’t even care if I end up needing a colostomy I am scared..