So my toddler is 15 months and I’ve been worried about his gross motor movement for a very long time now. He was born at exactly 37 weeks. He spent 18 days in the Nicu during that time at first they did an ultrasound of his head and it had some sort of finding where they wanted to do more testing it was extremely scary. He was transferred to a higher level Nicu where they did an MRI. He was described as low tone as a wimpy, white boy, etc. he had a lot of feeding issues which was a lot of our NICU stay and even when he came home, we struggled with him.

He’s made a lot of progress motor movement wise but I’m still just so stressed.

I’m not sure if I should switch pediatricians. He doesn’t seem concerned right now. But he also blew me off with my first child’s autism concerns for like 2 years, he’s now diagnosed.

He said before 3 CP is hard to diagnose. I dont know if I should push harder.

Long story short: my 15 month old isn’t walking, can stand but has to be holding onto something. He’s always seemed stiff and resistance to new motor stuff. Like he would fight sitting up. He fought learning to roll. He didn’t normal crawl till like 1 year old. He leap frogged around. Then fought standing. Now he’s fighting walking. He can holding onto our hands. But I still feel like it looks stiff? I dont know

My neurologist recently picked up on it when he was filming me for studies.

Most of the time I struggle with my cp, but sometimes you just have to go with the flow and laugh at things. One of the things recently that I used to struggle with was some of my spastic little episodes while laying or sitting down. I think I have a complicated relationship with it bc of my not being able to control that. But recently they just kinda make me giggle. Bc what do you mean I’m just reading a book and BOOM there jumps my leg. Or ooo my leg itches but before I can get to it BOOM there my leg jumps again. It’s kinda silly at the end of the day. Anyone find some of the parts of cp silly?

One of my twins has been recently diagnosed with spastic diplegia. Born at 30 weeks, extremely delayed in her milestones (almost 10 months corrected, does’t hold her head completely, doesn’t roll, stand, etc).

Her hands are affected as well, and I suspect spastic quadriplegia considering she has difficulties holding toys or even getting her hands to catch them. She cannot coordinate objects or move them from one hand to the other. She also has difficulties with solids, it’s hard for her to chew and swallow.

She is a very happy child, always smiling and up until this point, we believe her cognitive capabilities may not be affected (she didn’t babble at all but is now starting to use some consonants).

She does PT 4 times a week and we’re exploring other types of therapy.

I’m looking for any kind of advice from adults with this type of PC, anything that would be useful for a parent in our situation. I’m obviously new to this and I want to be as informed as I can to give her the best possible life. Thank you!

Hi everyone! I'm 24 and plan to try for a baby around 28–29. I have mild spastic hemiplegic cerebral palsy affecting my left side.

I recently switched OB-GYNs because my previous one wasn't understanding about my disability. Pelvic exams have been very painful for me if not impossible to complete. The last two times, the speculum couldn't be opened because of the pain. During an internal ultrasound, turning the probe toward my left side hurt so much that I screamed and had the technician remove the probe. Because of this, I'm worried about how pregnancy and delivery might go for me.

If you're a mom with cerebral palsy, I'd love to hear about your experience:

Pregnancy: Was it difficult? Did your CP symptoms change (pain, spasticity, balance, fatigue)?
Delivery: Did you deliver vaginally or by C-section? Was that your choice, or was it medically recommended?
Birth experience: How did labor and delivery go? Did your care team accommodate your needs?
Hindsight: What do you wish you had known or done differently?
After the baby: What tools, devices, or techniques helped with daily tasks like holding, carrying, feeding, bathing, and diaper changes?

Any advice, product recommendations, or tips for finding disability-informed providers are welcome. Thank you!

As above, or other communities like wheelchair, etc etc
Edit: Cos CP I fit into the phycological mindset of someone who has a disability their whole life, and it a-lot different than acquired disability.

The strokereddy I have the same physicality ( but a bit worn) as stroke people. They call themselves survivors which I don’t relate to.

Maybe a subreddit of CP hemis but there would be like 10 people. Then within that people are different.

Don’t get me wrong I love you guys and I still want to part of the team here

Hi, I'm Jenny! I have spina bifida and hydrocephalus, but this one's really about my best friend Lindsay, who has cerebral palsy. Together we run This is Us — our little island for the funny stuff, the infuriating stuff, and our beloved series "Stuff People Say" (I'll let you imagine the comments 😅).

Recent hits: the great adulting scam, disability edition, and why we live on an island but not in a bubble.

I'm done shouting into the void, so here I am. CP community — Lindsay would love your best "stuff people say" stories. Blog's at thisisussite.home.blog. See you on the island!

I am a mom of a 14 month old with spastic hemiplegia CP who lives in New Jersey. My daughter is in early intervention and outpatient therapies. I work for a hospital system and have decent insurance, as long as I go within the hospital system. Unfortunately my daughter’s therapist are not within the system so I am paying out of pocket until she meets her out of pocket maximum ($4,000). I am not considering changing therapist as my daughter has been making so much progress and I rather go broke then do anything to jeopardize her future. Has anyone been successful with getting their child Medicaid? Or even social security? I fear she won’t qualify according to my income.

ah i feel feeverish nausea and heartbeat fast

this is evening time i think it will get worse by night how you people handle these situations

For context I'm a 21 year old man from the UK who has severe spastic cerebral palsy, a seperate previous cancer history, and uses a wheelchair.

I have been on this thread for a while, and I've got to be honest I'm saddened by the amount of depression. I don't fully get it. Lots of you guys who are struggling have milder disability. I've seen some people attack parents ,and talk about how it's so hard actually having this disability so don't be selfish etc.

I think more people here should try separating themselves from their disability. Okay we can't walk so what?

I see many people here struggle with friends but I just wonder how many people are actually allowing themselves to be seen as individual people. What are your hobbies, interests or principles separate to you as a disabled person?

I thInk sometimes the perception given to parents about this disability is overblown. It's not a death sentence and if you think it is you've got no chance.

Is it all rosy? Of course not. I so wish I could play Football like the rest, but I've got around that by playing disability sport and my family watches me and coaching. I have a job and yknow what it's really hard to manage it and it sucks. I'm trying though. I think probably in the future I'll go down to part time.

I recently celebrated my 21st birthday and it was excellent. My message was simple. Yeah I'm disabled and at points my life has been bad. You cannot use it as an excuse to give up though or say oh I'll never make friends or I'm worthless. Everybody here is a person with a disability. Note what comes first there.

The only thing that I agree, still currently sucks is romance . But guess what? That sucks for everyone at the moment.

If you have a disability, my advice is get out there. If there is a barrier enjoy trying to break it down and remember that people will like you as a person if you show you are interesting regardless of disability.

I'm hoping to go abroad with my friends on holiday soon as many of my CP friends have done before with theirs.

Ultimately our life is harder. You can wallow in it or you can try and crack on. (I'm regularly in therapy for low mood so this isn't me saying anyone struggling is weak, the point is you have to have an intention to keep moving forward and make something happen.) You have to back yourself as a person regardless of the disability.

Hi, a local children’s hospital offers intensive therapy and my 10m old daughter and I will be staying with them for a couple of weeks. She’s going to be getting 3 hrs of therapy throughout the day 5 days a week. I’m so nervous that I’m doing too much but I know this is the right thing to do. It’s going to be so challenging going back and forth with therapies. Anyone who has gone through an intensive have any advice? I would gratefully appreciate it!

Hello, I have been living in the Middle East for quite some time and my baby was born here. I lived in the US for many years before then (we are citizens) though am originally from Africa. I need to move back to the US for my daughter’s medical needs and I’m not sure how to go about it. She has mild cerebral palsy and is significantly delayed in her development. She'll be qualified for early intervention program (she’s under 3 years old). The issue is that we don’t have a place to go and I don’t think I can take care of her alone. Any suggestions and guidance would be appreciated. I used to live in upstate NY

I read online that sometimes it can happen with cerebral palsy, but I wanted to know if anyone else had experiences similar to this and what you’ve managed to do to keep it under control.

I didn’t know him, I didn’t even finish watching Breaking Bad, but every time I think about him, I just want to sob. My stomach keeps dropping, I keep googling him as if it’s going to be revealed as a hoax. I’ve been following him for 8 years on social media, and he’s done so much for our community. I just wish the pain that he was in wasn’t so familiar for all of us

Hi everyone, I hope this post is okay to share!

I’m Cianna, mum to a little girl with hemiplegia, and the person behind HereforHemi.

We started HereforHemi in April this year because we wanted to bring families affected by hemiplegia and cerebral palsy together, help people feel less alone and give our children the chance to meet others who understand their journey.

Since starting, we’ve grown to over 600 families and have been organising meet-ups across the UK, bringing families together to make friends, share experiences and let our children see they aren’t the only ones going through this.

WE’RE NOW LOOKING FOR MEET-UP HOSTS EVERYWHERE!

We want to reach as many families as possible, not just in the UK but internationally too, and we’re looking for parents, carers or anyone passionate about bringing the hemiplegia and CP community together.

What does being a host involve?

It’s simply helping us organise a local meet-up in your area. This could be a park meet-up, a picnic, a family day out or something else suitable for our families. You’d help choose a location, share the event with local families and help everyone feel welcome. You don’t need experience organising events, and you won’t be doing it alone. We’ll support you with planning and helping bring families together.

Our aim is to build a community where parents can connect, children can make friendships and nobody feels like they’re doing this journey on their own.

If you’d be interested in hosting in your area, or would just like to find out more about what we do, please comment below or message our page, HereforHemi.

We’d love to hear from people in areas we haven’t reached yet, anywhere in the UK or abroad. We want to keep growing this community and make sure more families have the opportunity to be part of it.

It sucks that your mum gets to decide who you get to meet just because she thinks you’re that fragile. And honestly, I just find that so unfair.
Because it’s not the same when it comes to her or my sister. In fact, when my sister goes abroad, my mum even brings up the idea that if she’d known my sister was going to that country, she would’ve asked her to meet the man she has known for ages.
But when it comes to me, she doesn't say a word about it. Because apparently, I’m too fragile she said, to the man herself.

So Ive finally picked a pair of headphones that look “normal “ to me well besides the “stereotypical “ ear defender hinges but if anyone asks they’re headphones as well because they have the pause , play buttons and button up and down so it’s the truth lol ( the picture is showing the opposite side ) and they actually LOOK cool so maybe that’ll make people care less about what they’re and I’ll fit in wearing them , although fitting in is boring and I’m happy with my cerebral palsy some days , they’re the iclever focus Brand , and they have a 85 DB volume limit which is one of the reasons I bought them , yes I’m aware I’m an adult and I can control the urge of turning the volume up too loud which is very true but I just like that i literally CANT turn it up too loud, you can actually listen to 85 DB for I think 8 hrs consistently before causing damage but I don’t do that because they hurt my ears after a bit

Hello.

I've been having these pains ever since my last surgery and now that the injections in the nerves didnt work ill get a neurostimulator. I was just wondering if anybody else ever experienced this and what you did about it. Sometimes my feet turn red and sometimes my feet feel cold and painful. Most of the times it's warm stinging though.

Thanks in advance!

Mild cerebral palsy but unemployed and just can't find a way out. I've been crying and it all just hurts so much. Broke, I sad and so close to being utterly depressed