r/CerebralPalsy

Hi everyone. I’m looking for some advice and maybe a little reassurance from parents who have been in a similar situation.

My son is 2.5 years old and has hypotonic cerebral palsy and global developmental delay. He has been making progress, but it’s slower than other children. He currently has over 150 words and knows things like his colors, letters, shapes, and numbers. However, most of his speech is labeling things rather than having back-and-forth conversations or answering questions.

He recently had a speech evaluation where his expressive language score was 82 and his receptive language score was 71. The receptive score has me especially worried. The evaluation was based mostly on me answering questions about what he does and doesn’t do, rather than direct testing.

For parents whose children had receptive language delays around this age:

* Did your child make significant progress with speech therapy?
* Did receptive language eventually catch up, or at least improve a lot?
* How did speech therapy help with understanding language?
* If your child had CP and/or GDD, what did communication look like as they got older?
* Were your kids with GDD ever eventually diagnosed with a learning disability?

We’re currently in outpatient physical, occupational, and speech therapy and we recieve occupational and developmental therapy through First Steps.

I’m riddled with anxiety and sadness from the unknowns about his future. I know every child is different, but hearing real experiences from families who have been through this would really help. Thank you so much for sharing your stories.

I’m very worried. My baby’s MRI was pretty bad with global damage. He is 6 months old. He can lift his head during tummy time, roll from belly to back, coos, starting to babble, smiles sometimes but it’s more like a screech, can bottle feed and is starting purées, not much eye contact, he isn’t reaching for toys and doesn’t put his hands in his mouth HE HATES SITTING and goes into extensor tone where he straightens out his whole body. He relaxes if we’re sitting outside though and is not stiff when he’s sleeping. Any advice on breaking the extensor tone? Will he be able to walk? Talk? Can’t find much research where a baby has strong extensor tone. I’m grieving a life I imagined.

Hellooo

I was reading a post where people were discussing the mildest form of CP

And I realized that maybe I don't actually have the mildest form, I have no idea.

I feel like I'm going nuts. My whole life, doctors and my family have told me I should be grateful. They say that since I have such a mild case of CP, I shouldn't have trouble using stairs. But the truth is, I struggle a lot, I can't go up or down without holding onto the handrail, and if there isn't one, I either can't use the stairs at all or I have to sit on the floor and scoot down on my bottom.

Whenever I tell doctors this, they say it's unusual, that I shouldn't have that problem and they start comparing my case to children with cerebral palsy in countries with limited access to medical care.

On the other hand, my family says I'm just looking for pity and need to toughen up. Also, they complain when I ask for help getting out of the shower.

All of this shit has got me thinking: how do doctors decide who has mild cerebral palsy? I don't want to sound ungrateful or anything like that, but I don't think I like the term "mild", it feels like a label that's hard to fit into and creates the expectation that I have just as good as an able body person in doing tihngs.

Which means i cannot say i got a disability cause everybody stares at me and say im not on a wheelchair so i musnt say that.

35M living in FL. I just need to vent. I was denied disability this week. I had been on it since 2016. I had to come off it because I sold my house in '24. Didn't know about special needs trusts then. So now I have to appeal. There's so much paperwork to appeal. I'm sure this has happened to others, so I'm just asking people's experiences. And on top of that. My knee gave out, which made me hurt my finger when I fell. Oh and my house is having plumbing problems. So, shit week for me. Hope you guys are doing better. Any advice/words of encouragement are appreciated.

Hi there,

Do many people here feel barefoot is best for them, I've been in my bare feet 3 days now and i never want to wear socks / shoes again

My child was recently given an official diagnosis of spastic cerebral palsy, and I’m trying to learn everything I can about the resources, benefits, and support that may now be available to our family.
He is currently receiving occupational therapy (OT), physical therapy (PT), speech and language therapy, and feeding therapy. He also recently started taking gabapentin.

I’m looking for as much information as possible regarding available services, financial assistance, early intervention programs, adaptive equipment, insurance benefits, nonprofit organizations, educational resources, and any other programs that could help him reach his fullest potential.

He is currently 14 months old (11 months corrected age). He is very attentive, social, and engaged. His motor skills are delayed, but he continues to make progress. He can roll, move around on his belly, and sit independently for about seven minutes. He has excellent head control, tracks people with his eyes, shows stranger anxiety, and is beginning to experience separation anxiety from his parents.

For those of you who have been on this journey, what resources, programs, grants, therapies, equipment, or organizations have made the biggest difference for your child or family? Is there anything you wish someone
had told you right after your child’s diagnosis?

I’m open to any advice or recommendations. Thank you for taking the time to help.

I would like to hear people's opinions on this. Last week my cousin sent me a message asking me to watch the movie "I Am Potential" based on a true story of a boy born blind and unable to walk. I asked my cousin what was the purpose of sending this? The response was something to watch of a person that overcame two handicaps. I was offended. Should I have been?

as someone who was born with spastic diplegia cerebral palsy I sometimes feel like a fucking sm6dog this time of year because my startle reflex is fucking annoying

I wrote a heartfelt letter to my father, Expressing how I'm really feeling. Can I get some feedback. I'm afraid im going to be blamed or have the tables turned on me.

Dad,

I hope this letter reaches you safely and that you'll read it with an open mind. I want you to know from the beginning that I'm not writing this out of anger or to place blame on anyone. I'm writing because I want you to understand what my everyday life has been like from my perspective.

My break from college was from last Saturday until today. During that entire week, I did nothing but sit in my apartment. Once in a while, that's perfectly fine, but it's starting to become my everyday life.

The only place I can really go on my own is Wanie's house, where I end up just sitting there too. The problem isn't Wanie's—it's that that's my only option. I don't have the transportation or the resources to get five or ten miles away, explore somewhere different, meet people, or even spend a day doing something outside of this small area. I also don't really know anyone my age who can just come pick me up so we can hang out, go do something, or socialize. Because of that, I'm mostly confined to the same general area every day, with very few opportunities to experience anything different.

My life has become the same cycle every single day: wake up, talk with JoAnn, sit in my apartment, go roll around outside because there's nowhere else to go, maybe go to Wanie's, come back home, go to bed, and wake up to do the exact same thing again.

Now my college semester starts again in a couple of hours, and the cycle begins all over again.

Before I go any further, I want to make something clear: I'm not blaming you, JoAnn, Wanie, or anyone else. I know people have their own lives, responsibilities, and limitations. I'm not writing this to point fingers or make anyone feel guilty. I'm writing it because I want you to understand what my everyday life feels like from my perspective.

I'm grateful to be in college because it's one of the few things that gives me purpose. But it's online, so when I log off for the day, I'm still sitting in the same apartment. I don't get the opportunity to walk around campus, meet classmates, build friendships, or simply be around other people. When class isn't in session, I realize how little of a life I actually have outside of it.

The hardest part is that this doesn't feel temporary. It feels like I've been living this way for most of my life—watching other people go places, build friendships, have experiences, and move forward while I stay in the same routine. I don't want to keep watching life pass me by. I want the opportunity to actually live it.

I hope you can understand that this message isn't about blame—it's about helping you see what life has felt like for me and why I want things to change. I love you, and I hope we can keep talking about this with honesty and understanding.

Im level 2. I have a great relationship, a career and masters-level education, but I find myself unable to build social connections. Part of this is definitely due to being an introvert, but other part is definitely due to me having CP. I just find socialising stressful, I feel like i can't keep upp with others. Im bad at stairs and can't do escalators due to balance issues. I always feel awkward asking people to slow down or wait, makes me feel like a burden that is slowing everyone else down. When I was younger I had friends when my mobility was better, this was ok fun but I would always crash out later due to the tiredness. Im also quite anxious about going to new places as not everywhere is accessible for me and i may get stuck in places that are considered normal. In my youth many invites stopped coming after i fell down in public or was denied service due to ignorant bar staff thinking I'm drunk while sober.

I feel like lot of my life i used all my energy to fit in with others, adapting my personality or hiding my disability. Then i decided this is no way to live so i stopped. Now I'm alone.

I've tried disabled groups but didnt feel this was my jam. Disability is such a wide spectrum and I found that I need other shared interests apart from the disability. Im also into mental things such as reading, politics and philosophy amongst others. Many of these groups included everyone which is great but for example the book group books and discussions were at the level that people with learning disabilities can also contribute, which means that we wouldnt touch on any too complex topics. I know this is ableist of me but I'm someone who has rightly or wrongly coped by trying to compensate my slightly broken brain with academics.

I have a nice life and im quite happy in my own bubble and i may stay here forever. However sometimes I wonder if I'm missing out from something great in life.

I wonder if experience like mine is common in our community?

Edit: Title should say “his hygiene.”

My son is 15. He has CP. I’m his dad. Just looking for some advice from some people in this community. He needs right much help and for bath time I help him in and out and do some washing myself and let him do what he can reach and is able.

Lately every now and then there has been a certain white fluid that males produce that has been dried in his groin area and in his hair down there. At first I wasn’t even sure what it was but it’s definitely that. I didn’t want to embarrass him so I haven’t commented on it at all and he hasn’t mention it either. I feel awkward about it but I know it’s normal and I don’t want to shame him so I just act normal.

A few days ago I was about to walk in his room and I pushed the door open (it was shut but not latched all the way) and he was on the bed stomach down and fully clothed with a pillow between his legs and he was kinda rocking back and forth.

I quickly left and due to the position of his bed he was facing the other way and I don’t think he noticed me. It never crossed my mind before but due to his lack of grip strength it makes sense that he may be unable to engage in self pleasure in the normal way males do.

I feel he is just doing that and making a mess in his clothes and basically just sitting in the mess until his next bath. I feel that could be uncomfortable for him and as far as hygiene goes I feel it’s not ideal to be like that for a long time without being cleaned up.

But it’s a very sensitive topic so I’m not sure if I should bring it up at all or not. I could continue to ignore it. But I want him to know if he needs to be cleaned it’s okay to ask for help and I won’t make fun of him or think he’s weird for that. Also I wanted to try to think of ways maybe he could engage in that more independently and in a more clean manner.

If he’s struggling with that I thought maybe we could talk to his doctor about assistive devices or just better ways to manage hygiene. Maybe he does it before a bath. Or I help with removing clothes and then give him some privacy and leave him with a towel or something. I’m afraid it may be hard for him and it’s causing him some distress. I don’t want to be overly intrusive either though. Any thoughts?

The other day I was at the grocery store and we locked ourselves out of the van so we had to wait for AAA at Starbucks. The security guard comes up to me and says “what’s your disability?”
I’m thinking “ here we go”
I say “ I have cerebral palsy”
He says, “ I used to teach kids with CP in the special Olympics, but not as bad as yours”
I say, “ I have a PhD in disability studies and teach at Asu”

For women (heterosexual) with Cerebral Palsy who are married or in serious long term relationships with an able-bodied spouse or partner, I have a few questions.

• What helps you feel comfortable being around your partner’s friends, family, and social circle?

• How do you navigate and enjoy intimacy and sex with your spouse or partner?

• If you do daily physiotherapy or exercises, does your partner help or support you with that?

• How have you dealt with people staring, or asking how your able-bodied partner ended up with you?

I’d really appreciate hearing honest experiences from women who have lived this.

I'm 24 years old, I'm ugly, and I have cerebral palsy (You can find video of me walking on my profile). For years, I lied to myself, convincing myself that I'd accepted the fact that I'd probably never be in a relationship. But a few months ago, all the emotions I'd been suppressing for so long exploded right in my face. I made myself a promise that I'd at least try to find someone, because it feels like this is my last real chance to change something. But you all know how hard dating is. As you get older, your chances of finding a partner generally get smaller for a lot of reasons, so it feels like the clock is ticking and I'm running out of time. I really need to hear some success stories to build me up—especially from other men—about dating. I'm honestly terrified (which is probably obvious from the posts on my profile), and I just need to hear something positive. Even if, statistically, the odds aren't great, maybe someone out there has a story they'd be willing to share.

I’m just wondering if anyone has had an experience like this or has any insight. I had chronic SI joint and hip pain for years. It increased in recent months and my quality of life was really impacted. So I looked into some exercises and weight training. The improvement was incredible. Not zero pain, but not yelling out when I moved certain ways.

I have kept up the regimen nearly daily for months. I have had about 2 blissfully low pain months. But for the last few days, the pain has returned— even though I have kept up the regimen. Any ideas as to what I need to do?