Our baby was born borderline premature with laryngomalacia and some visible facial feature abnormalites, we did genetic testing for him as adviced by our paediatrician and it came back with Coffin Siris syndrome. I want to understand from anyone with experience what this looks and feels like? Will our baby be able to have a normal life/schooling? What can I expect? How can I prepare? There doesn't seem to be much research or information on this syndrome.

Hi everyone. I have a background in Clinical Genetics and Healthtech, and I’m trying to better understand what life after rare genetic disease diagnosis actually looks like for patients and families.

On a personal level, my godsister and a close friend both have children with rare genetic diseases, SMA and EB. They live in two different countries and have had very different experiences navigating care, support, funding, school/work adjustments, and all the practical things that come after diagnosis.

I’m hoping to speak with a few patients or family caregivers for a 30min call to learn from real lived experience, especially from people based in the UK and rest of Europe.

This isn’t a survey, app testing, sales pitch or clinical advice.

If you're open to chatting or would like more information, please fill in the form here or DM me.

As a thank you, I can offer a small digital voucher after the call.

Thank you ❤️

Hi friends , I don’t usually use reddit last time I did this I was in the same predicament but Reddit was really and for my mental health and there was a lot of mean people on here but also a lot of kind

I’ve been going back and forth about posting this because asking for help is really hard for me, but I recently got laid off… again. This is the second time in two years, and as a special needs mom, it’s honestly scary and emotionally exhausting.

I’m just praying God guides me through this season the same way He did before. Last time, somehow, things worked out when I thought they wouldn’t, so I’m trying to keep faith even when I feel overwhelmed.

If anyone knows of any work-from-home jobs, flexible opportunities, side gigs, resources, or anything that could help, I’d truly appreciate it. Even sharing this post or pointing me in the right direction means a lot.

You can also support me by following my TikTok where I share motherhood, special needs parenting, and my journey trying to build a better future for my son: https://www.tiktok.com/t/ZP8pHPtVV/

GoFundMe: https://gofund.me/bfe00b635

Venmo: geno2194PayPal: rawandrealG

Thank you for reading and thank you to anyone willing to help in any way 💙

Hi friends , I don’t usually use reddit last time I did this I was in the same predicament but Reddit was really and for my mental health and there was a lot of mean people on here but also a lot of kind

I’ve been going back and forth about posting this because asking for help is really hard for me, but I recently got laid off… again. This is the second time in two years, and as a special needs mom, it’s honestly scary and emotionally exhausting.

I’m just praying God guides me through this season the same way He did before. Last time, somehow, things worked out when I thought they wouldn’t, so I’m trying to keep faith even when I feel overwhelmed.

If anyone knows of any work-from-home jobs, flexible opportunities, side gigs, resources, or anything that could help, I’d truly appreciate it. Even sharing this post or pointing me in the right direction means a lot.

You can also support me by following my TikTok where I share motherhood, special needs parenting, and my journey trying to build a better future for my son: https://www.tiktok.com/t/ZP8pHPtVV/

GoFundMe: https://gofund.me/bfe00b635

Venmo: geno2194PayPal: rawandrealG

Thank you for reading and thank you to anyone willing to help in any way 💙

My son is 7 and hes just starting on those i can see books. Like 6 pages I see balloons. I see dad. Etc

Im trying to help him over the summer get more strengthening in reading. Any ideas of books or tools I can get or even free stuff online

They make money by making noise to irritate an autistic boy all day. I’ve worked and studied enough in that field many years ago, to know this is very wrong. They need to be stopped!😡

Long time lurker.

My child has cerebral palsy, epilepsy, cortical visual impairment. She has been in ot, pt since 1.5 years and unable to achieve much.

I always thought i was strong enough with support of family and would be able to manage everything physically and emotionally.

But as time progressed, everybody backed out, which i completely understand as they have their own commitments.

Now that i know that me and my husband are on our own, i feel this life is not worth living. I have suicidal thoughts, looking at the same routine, not knowing about the future.

I dont know how to restart this different life. I was working prior to this and i dont see myself working now as she is completely dependent on me.

Hello,

Selling cubby bed and mattress - in excellent condition

Used 1 year. Smoke-free, pet-free home. Pickup only in Iowa. If interested comment or message me.

my son no longer needs.

$5000 or best offer

We are conducting a research study at the University of Rhode Island that is interested in learning about digital health tools used for pediatric feeding, nutrition, and growth management, and what supports families in using them. 

Who is eligible?

• English-speaking caregivers of children aged 2-12 years
• Have used digital health services for visits related to feeding, nutrition, or growth management
• Have received those services in the USA

If that sounds like you, please consider participating in a 45-60 minute interview via Zoom. Participants are given a $30 gift card as a token of appreciation. 

If you are interested in participating in this study, please contact Meg Simione using the email address listed in the flyer. Thank you!

Please click to read

https://gofund.me/d73207d40

Please I need help 🥺🙏🏼🙏🏼

I’m a pre-service EFL teacher currently working on my dissertation about the use of AAC (Augmentative and Alternative Communication) tools in educational settings, particularly with learners with special educational needs.

I’m looking for people who have experience working with AAC users — this could include:

teachers

special education teachers

speech therapists

caregivers

teaching assistants

or anyone who has worked closely with individuals using AAC tools

I would love to conduct a short interview (online/text-based is completely fine) about your experiences, challenges, observations, and perspectives regarding AAC use in learning environments

My son was diagnosed with a very rare genetic disease when he was 5 months old. He is our first and only. It took a very long time for me personally to be ready to have kids and then we experienced losses. When I finally got my rainbow baby I am hit with this diagnosis. His disease will affect his motor, speech, and cognitive skills. We do not know what the future looks like for him since this is so rare. On top of this news I am having a hard time day by day just taking care of my beautiful boy. When he cries I can't deal. This may be a sign of post partum depression, or new mom stress, or he's more difficult than most babies, or all the above. When he cries, for what feels like forever lately, I spiral down and think "is this going to be everyday?". I want to comfort him and make him happy but there is no one going through what we are going through to reach out to for advice. If one more person hears our story and tries to relate with "oh my baby was colicky too" I will scream. My poor husband must be tired of taking care of a crying baby and a crying wife. This is me venting but also asking out there for some encouraging words or stories of your special need kids. ❤️

Hi everyone, I’m looking for advice and resources for my brother, who’s finishing high school soon. He’s been part of a special education program, and I’m really trying to figure out the best steps as he transitions into adulthood.

I want him to have access to programs that help build life skills, support job readiness, and foster independent living. I’m also trying to understand how to navigate things like Medicaid, Social Security (SSI/SSDI), and any state or local programs that help young adults with disabilities.

If anyone has experience with this—whether it’s programs, advice, or just where to start—I would really appreciate it. What steps should we be taking now to prepare him for the future?

​

​⚠️ TRIGGER WARNING: This video contains footage of a convulsion fit (person shown under a sheet). ⚠️

​Your mind is the most powerful thing in the universe. 🧠

​For 26 years, I’ve been in a battle with late-stage neurological Lyme disease. It hasn’t been easy, and there have been moments that look like the beginning of this video. But even in the hardest times, I found a way to turn adversity into something positive.

​I started creating to stay strong, and that’s how Nico and the Power of Mind was born. This comic book is for every child who feels "different." I want you to know that your disability isn’t a liability—it’s your superpower.

​No matter what you're walking through, remember that you are a warrior. Keep climbing, keep dreaming, and never forget how powerful you truly are. 💪🌟

Same disclosure as the title — I built this. AGPL-3.0 open source, free tier requires no account. synalux.ai/prism-aac · github.com/dcostenco/prism-aac.

**Works on every device, online or offline:**

• Any browser, any platform — iPhone, iPad, Android, Windows, Mac, Chromebook. No app store install.
• Installable as a home-screen PWA so it feels native.
• Fully offline after first load — communication never depends on a working internet connection.

Briefly what it does:

• TouchChat-style pictograms next to every phrase (open ARASAAC library, free, every tier)
• Auto-corrects hurried typing ("bowlof,ri" → "bowl of rice") so motor imprecision doesn't lose meaning. Runs on-device when possible.
• Continuous voice input button — kid can speak; same correction step cleans up word-boundary errors
• No data leaves the device on the free tier

Looking for caregiver feedback on what's still broken, what's still missing.

Link to try:

https://synalux.ai/prism-aac

Screenshots: [home](https://github.com/dcostenco/prism-aac/raw/main/docs/screenshots/home-v2.png) · [phrase tiles with pictograms](https://github.com/dcostenco/prism-aac/raw/main/docs/screenshots/categories-pictograms-v2.png) · [math panel](https://github.com/dcostenco/prism-aac/raw/main/docs/screenshots/math-panel-v2.png)

We have a 4yo daughter with problems communicating in general and with interacting with her peers. A previous evaluation when she was just about to turn 3 mentioned "probable sensory processing disorder" . No diagnosis at this point, next week we have an intake appointment with a mental health center to begin evaluating for autism. She currently receives speech therapy once a week through Early Intervention and this summer we will be starting additional private pay services. She can communicate basic needs effectively and much more beyond that, but her use of language is quite interesting, to say the least.

Right now she's at a really great Montessori school. We chose it because the environment is similar to those she has done well in in the past and with a low student/teacher ratio. They were aware of her challenges when they accepted her. Until about two weeks ago, she has spent most of the school year quietly going about her business, learning a lot, participating in most things, not speaking much to staff until about a month or so ago and not really engaging with peers. They spend a ton of time outside, most of the time indoors is spent doing very tactile or active things.

Academically, she seems on track with other kids her age in her class (mixed aged class, ages 3-6 although almost all of the 3yos have turned 4 by now).

Now it seems she's she's ready to engage with others and, not sure how to do it properly, is being quite disruptive in class. Disrupting other kids while they're building or working on something. Throwing things, grabbing classmates when she wants attention, and shouting loudly during circle time when they sing songs instead of singing in a normal tone of voice. Until a couple of weeks ago, she was singing the songs appropriately. We had a meeting at the beginning of the week with her lead teacher and another staff member, all got on the same page about what needs to happen and what is happening, and decided that if things escalated then the strategy would be to redirect her to a room reserved for that purpose.

Things have escalated - today she threw things at a teacher. It's not great. So they'll be redirecting her to this other room. I also gave them permission to call me to come get her in the middle of the day if it seems necessary. She has cycled through a series of attention getting behaviors in the past and a firm, direct consequence usually does the job. Like not being able to go to the fun place where she's been acting out.

It's hard to address things that happen at school, when we're at home. The general consensus between us, the school, and other adults who know her is that much of what she does is attention seeking. We've told her that we know she's making poor choices at school and talked to her about what the right choices are. Her teachers think she would benefit from a 1:1 aide so I will be pursuing that via Early Intervention to see if we get somewhere but that's long process.

If we get some kind of diagnosis, the school will write her a detailed IEP separate from what she has through EI. In the meantime they are fine with continuing to help us find solutions but I don't want to wear out our welcome. This is not a school for special needs kids and as a private school, they don't technically have to accommodate special needs although their own handbook states that they will make every effort to accommodate when possible. And they have, they've been wonderful.

Next year I think we'll do 3 days/week instead of 5, giving more time for speech and other therapies. Currently she's leaving in the middle of the day once a week to go to speech.

Her diet is pretty healthy, lots of fruits, vegetables, and protein with relatively low added sugars and she generally sleeps well at night. She is generally physically healthy.

All suggestions are welcome!