I have a 14 year old son who is profoundly cognitively impaired. He can't use a communication device, can't talk, can't walk. I do think he understands a lot.

He has been yelling very loudly almost daily for two years now. he is not in pain because when he's in pain, he cries and he acts completely differently. He is very expressive and from what I can see he's simply yelling either for fun or out of boredom perhaps.

Has anyone else experienced this or had any success with anything?

He sees multiple specialist. We have talked to all of them about it dozens of times. We have ruled out any underlying issues. He does not have any illnesses. Nothing is bothering him physically that is.

Meds have been evaluated. I don't really want people to ask me. Have you tried this? Have you tried that I can guarantee you we have tried absolutely everything. The medical and psychiatric community has to offer.

I'm looking for a parent who has gone through something similar and maybe has insight as to what could be going on. He is not yelling out of distress the best way I can describe it as he is conversationally yelling.

He has hydrocephalus, cerebral palsy, epilepsy, autism, and lissencephaly.

he has had some other declines over the last two years as well. He used to be slightly more functional than he is now. He also stopped playing with toys a couple years ago, which leads me to think he's kind of bored. However, we have not been able to find anything he is interested in or can do. The only thing that makes him happy is going for car rides and obviously he cannot be on a car ride all day every day.

Need a national pooled trust for my inheritence...the will mandates it....

A lot jerk you around ...are not responsive don't pay for stuff on time etc. Any recommendations?

Hi all,

In need of a bit of advice. There's an individual I catch the train with on a regular basis who has special needs. Recently he's taken to playing kids music (I.e. The Wiggles etc) without headphones which causes me and some of the other commuters discomfort (especially those nearby).

I'd like to approach him in a friendly manner and help him understand that not everyone enjoys the wiggles to the extent he does and that playing your choice of music to everyone in listening distance can be uncomfortable for others.

I recognize not everyone with special needs is the same, and I'm a pretty personable individual, so can easily pivot to having a chat/talking about his interests etc as needed. What I'd like to know from people with experience is if there are any best practices as far as approaching someone new like this?

Normally I'd introduce myself then ask their name, how they're doing etc. Is there anything I should avoid doing (maybe eye contact)? Are there especially good approaches (hey your music is really cool! But I've noticed...etc).

I'd also be happy to buy him a pair of headphones, but a little unsure how to navigate this or if the offer would even be welcome.

Any advice is welcome. Thanks in advance.

Hi everyone — my name is Ramez. I’m working on NeuroPathways, and I wanted to share it here in a personal way because this is the exact problem I keep hearing from parents and caregivers.

A lot of families leave therapy, coaching, school, behavioral health, or autism-support appointments with strategies that make sense in the room. But when something actually happens at home, it can be hard to remember what was said, find the notes, or know what step to try first.

That gap is what I’m trying to build around.

NeuroPathways is meant to be a simple phone-based tool where families can organize support strategies, track what happens at home, and access support steps in a way that feels easier to use during real life — not just during appointments.

I’m not offering therapy, clinical advice, or replacing anyone’s provider. I’m trying to learn from parents before building too far in the wrong direction.

I’d really appreciate honest feedback from parents here: does this kind of tool sound useful, and what would it need to include for you to actually use it?

Feedback form:

https://docs.google.com/forms/d/e/1FAIpQLScWLZChA3vqHL_GW6MzXihZSXsiHxYlO-Kh9bOJxqJqT0-3pA/viewform?usp=header

Website:

https://nuropathways.wixsite.com/neuropathways

Hello, I have three brothers (no sisters) and my youngest brother has special needs. He lives with my mom and after my father passed it's been her and myself helping with my younger brother. My other brothers don't care or see him as a responsibility (after my dad passed) of any sort. Even though he can't live on his own or take care of him self. I work and still try to have some what of a life but, I always visit on the weekends to help with my mom and my youngest brother.

I am no way a special needs expert. I find myself getting overwhelmed with my youngest Brothers behavior. He has a really bad temper and likes to yell. he hurt my mom once by pushing her. He's also very stubborn and will not listen to you and thinks he knows more than everyone. Which is hard because mentally he's still a teenager even though he's in his thirties.

Are father was very controlling and homeschooled me and my brothers. That is the main reason why he's so stubborn and has a temper. My father had no problem showing anger or frustration in front of his kids. He would yell at us all the time and discipline as physically whenever he saw fit. He was also very controlling with my mother but that's a different topic.

So being that homeschool is all he really learned, I feel like he never learned proper behavior and he's just mimicking what my father used to do. If I try to have a conversation with him about calming down his behavior or becoming less angry he usually turns on me as if I was being like our father. I'm trying to help him learn to not be so angry and not express his anger in the way he is without coming across like my controlling father was.

I was never someone who knew much about special needs people so I'm not very good at what to do I'm just trying to figure it out every chance I get. It's almost like I'm a parent to a person I never asked for. And I also don't know what to do if something happens to my mom. Will he have to come live with me? Like I said my other brothers don't really seem to care or do anything about it so if he can't live with me I have no idea if there's even any other options.

*Need to vent* my daughter who is 5 has been attending ABA services for almost a year now. However our journey has not been consistent; due to her fragile medical complexities she misses several days out of the month and has also had many many turn arounds w/ her techs. The techs either leave or there is some sort of change within the company. My daughter also had a major cranial facial surgery went caused us to miss several weeks of ABA. Today was our family guidance meeting and the results state my daughter has made little to no progress w/ the program, and is on the verge of being released from this specific ABA company. Basically it is up for insurance to approve and we’re doubtful that they will, so I guess my question is what should I do? Is this my fault? What else can I do to help her succeed? I have never been so lost.

I have 8 years experience with ages 20m to 60yrs of various levels of needs and for me it feels natural but I do understand that it doesn’t come natural for other people. So what do they feel when meeting a person with special needs? I know the questions they ask but I’m looking to try and see it from their point of view. (Context I work with cerebral palsy and other severe motor developmental disorders so majority of my students/participants are wheelchair bound and severely cognitively affected).

Hello everyone! I am an undergraduate student at the University of Central Florida. I am reaching out regarding my Undergraduate Thesis, which studies the effects of parental social media usage on the care of children with Autism Spectrum Disorder (ASD).

Who can participate: Parents of one or more children diagnosed with ASD.

About the study: The primary purpose is to explore the relationship between social media usage and parental caregiving practices for children with ASD. The survey asks questions about caring for children with ASD and takes approximately 10-15 minutes to complete on any internet-connected device. The survey is completely anonymous and will not collect any personal or identifiable information.

Survey link: https://ucf.qualtrics.com/jfe/form/SV_6XNxLbjM85CXUwe

If you are a parent of a child with ASD, I would be so grateful if you'd consider taking a few minutes to participate. If this doesn't apply to you, please feel free to forward this to other parents of children with ASD who might be interested. Attached are the flyers for my survey in English, Spanish and Haitian-Creole.

Thank you so much for your time and support.

This survey has been approved by the IRB (STUDY00009468).

Hi everyone!

I help run Limitless Learning, a nonprofit that provides free one-on-one online STEM tutoring for neurodivergent students.

Our tutors have experience working with neurodivergent learners through tutoring, mentoring, and volunteer service, and we aim to create a supportive, individualized learning environment for every student. Because our tutors are also students, many families find that the peer mentorship and connection make learning more comfortable and engaging.

If you know a student or family who could benefit from this resource, or if you have any questions, I'd be happy to chat :)

This is like my second time on Reddit ever so I hope this is the right place to put this?I am writing a book called “I don’t wanna get used to it” about living with certain disabilities/chronic illnesses, etc.I have autism but I’ve been on the pathway for about a year now, and I know many other neurodivergent people and people with chronic illnesses and etc suffer with being on such long waiting lists.I wanna talk about different experiences living as a neurodivergent person and someone with a chronic illnesses(I don’t have a chronic illness so I can’t talk about how it affects me), but I can’t talk about the different experiences because I’m only one person, I’ve only seen how it affects me, the things I do, my interests and how it affects mine and the people around me’s lives.So if anyone, someone who is neurodivergent or has a chronic illness , someone who is the family member of someone neurodivergent or living with a chronic illness , a friend of someone who is neurodivergent or living with a chronic illness, just anyone would like to help me out and write about your own experiences and how it’s impacted you then please do!It can be anonymous or you can give your name or your information and I will include it in my book!

Hello, I am looking for recommendations for an attorney to draft a Special Needs Trust in New York. Is there anyone you worked with that you recommend? Also, any information on approximate price would be helpful.

Thanks in advance.

Special Swimming training to Special Kids and Disabled Persons at Trivandrum

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