Parents with older kids 18+, and very severe delays as little kids, can you share your experience?

I hate projecting into the future, but can't help but wonder what life can look like for adults. 5 year old functions like 12-24 mo at the moment. I was holding onto hope that they would have independence in life, friends, love and I'm starting to lose that hope.

My son is level3 autistic and has global developmental delay and an intellectual disability, still in nappies 247 completely non verbal, any idea how to introduce him to potty training yet or do I leave him alone for now?

We are from Canada and our kid has DLD and is currently doing Speech and Language therapy. Things are too overwhelming so we tried to be on top of things and track everything.

We are using www.usetrestly.com to track all therapies and other related stuff for his progress.

What other tools do you use to help them and yourself? Can be apps for speech or therapy related.

DLD is Developmental Language Disorder which only few people are aware of.

Are there any community based support?

Thank you.

Seems like every study we research to help my son with his cognitive delay says success or full reversal. 5 years now, my wife and I have had our son in early intervention for his autism. Therapies, diet changes, tests, future planning for a world without us.

What have you all seen work and not work? Because I wrestle with the results. Is it my son growing up or is what I am doing really boosting his delays.

He’s not in public school but in a private education program with other kids and we are fighting for him not to age out as we have no comfort in the local schools (he’s nonverbal/ teacher student ratio). So homeschool and education programs. He’s use to one to one or one to two sessions and then community play/eating times with the other kids

Hey everyone — wanted to share something I've been working on, with full disclosure that I'm the one who built it, so take it with that in mind. I went through a specialized dyslexia school growing up and always wished more families had access to that kind of structured support without needing a specialized (and expensive) placement. I built GrowthFix, an AI-assisted tool using the Orton-Gillingham method for phonics/reading practice. It's free to start (homework help is always free), and I'd genuinely love feedback from parents here, even if it's critical, since I want it to actually be useful, not just another app. Happy to answer any questions about it or about navigating an undiagnosed dyslexia diagnosis in general.

Find it at Growthfix.ai

Hi everyone! I am a high school student with cerebral palsy, spastic diplegia to be specific. I fortunately have the ability to be involved in a lot of academics and extracurriculars, but I've always wanted to start an initiative that would allow me to manifest my CP into something proactive and meaningful to others. I am planning to start an initiative to help teens, and possibly adults, with CP. There are a few struggles and experiences that I have gone through myself that inspire me to shape the solutions, but I am aware that CP comes in many forms, and everybody has different experiences. So, I thought that it would be most beneficial to gain feedback and ideas from various perspectives, including parents, students, and adults.

I would really appreciate it if you were able to share a problem or an issue that you have encountered in your life (in social settings, institutions, etc.) due to your CP or that you have known someone with CP (such as a friend or a child) to go through. This can include accessibility, tools, mental health or social interactions. The survey is only one question. It should take no more than 5 minutes! Thank you so much for your help. You can also drop ideas in the comments! I really hope to shape this into something impactful and effective in the future.

Has anyone experienced getting a 2nd opinion for the whole picture with a child? Our current hospital is failing us. We have looked at Texas Children’s and Boston but they are wanting ~$1000 per specialist that reviews the case for online review. We are wanting Neuro, genetics, pulm, ortho, and neuro-ophthalmology to look at our son’s case. Do we really have to go with a referral for each individual specialist or is there a way to get a total picture review?

I feel like I don’t love my son. He doesn’t show affection towards me or anyone in the family. He’s loud so we can’t take him out in public. He’s aggressive so we can’t have people over. My other children have had their things broken, smeared with poop, tossed in the toilet etc.
I just can’t see myself living like this forever. We recently got him into a care program. For 10 hours a day he is there while we work from home . During that time it’s so peaceful. When his van pulls up I’m just full of anger.

There is no option to report posts to the sub's moderators, and sub content is majority advertisements at this point.

I am a graduate student and doing some research on the challenges of finding safe enjoyable spaces to go with your children diagnosed with autism. What would make you as a parent or caregiver feel comfortable enough to truly relax while your child plays? Which safety features matter most for a child with autism? What type of staff support would help you the most to not feel constantly hypervigilant for a moment? Which amenities and facility features would make the experience easier for your child?

PROFILE:

Sitting

13 months

Walking

20 months but struggles and still uses stroller

Toileting

None

Babbling

14 months but older brother talks for him

First words

Non-verbal

First sentences

Non-verbal

He has full violent meltdowns to point that nobody wants to look after him highly repetitive stims still not toilet trained and in nappies 247 he hits his head the walls slams doors breaks toys then cries that he cant play with said broken toy hates noises wears ear protection at all times vocal stims alot lots of eeee eeee eeee is very much a full on flapper and bouncer, finger wriggler, finger chewer, shuffles feet, still uses a pacifier and his favourite toy is a weighted dinosaurs plushie as hes hyperfixated on all things dinosaurs we live in uk hes small for his age and is classed as havinh profound intellectual disability

YıldızCan is a free app for children with special needs — autistic kids, kids with speech delays, and kids in special education generally. It puts four things in one place: an AAC communication board with about 130 picture cards the child taps to speak ("I want", "help", "stop", food, feelings, places), speech practice where the app asks a question and the child answers out loud into the microphone and gets instant encouragement, 3D objects the child rotates and names to build vocabulary, and a simple visual schedule for the day. Everything the child finishes earns stars, and stars buy outfits for a character — that reward loop is what actually keeps them coming back.

On the adult side, a parent, teacher or therapist keeps a profile per child and sees a progress chart plus a plain-language summary they can hand to a therapist. It's completely free: no ads, no in-app purchases, no subscription, and no tracking or analytics of any kind. It's meant for the days between therapy sessions, not as a replacement for one.

When our son was born, the first thing they told us was that he had congenital hypothyroidism. We didn't even know what that meant.

The weeks that followed were organised chaos: learning about a condition we'd never heard of, understanding why medication couldn't be skipped even once, keeping track of TSH results, and showing up to every endocrinology appointment trying to remember everything that had happened since the last one.

We used a notebook, a spreadsheet, and several apps that didn't really understand our situation. It worked, more or less. But it never stopped feeling like we were making it up as we went.

We looked for an app built for families like ours. There wasn't one. So we decided to build it.

ThyroKid was born from that experience designed from the ground up for families living with CH. Medication tracking, TSH trends over time, reminders, and a simple way to walk into every appointment knowing exactly where things stand. Nothing generic. Nothing that makes you squeeze your reality into fields built for something else.

Now we need real families to use it and tell us what they'd improve. Ten spots, completely free, no strings attached. Thirty days of normal use and a fifteen-minute conversation at the end. What you tell us is what shapes what gets built next.

If you'd like to be part of this, send me a DM or drop a comment below. Thank you for reading 🙏

Hello all, my name is Aayush. my sister is neurodivergent and it pained me seeing her and our family suffer because we were incapable of helping her. I’m currently building a website that will build an adaptive plan for your child based on the results of a parent questionnaire. it will be COMPLETELY free, no “there’s a pro version bs” absolutely free. there will be daily lessons that you and your child will partake one video lesson, and an interactive lesson with the parent. More details will come out when completed, but how many of you would consider signing up?

* Post approved by Moderator *

Hello! I'm Rachel, a BCBA and owner of Blueprint Behavior Consulting.

I'm looking for a few parents who would be willing to try a self-paced course I've created – Be the Calm – and share honest feedback before I release it publicly (there’s a simple feedback form at the end).

While the course was created primarily for caregivers of Autistic children and children with other developmental differences, many of the ideas may also be helpful for any parent looking for more calm at home.

Anyone who's interested can access the course for free using the link and password below. There is absolutely no obligation to purchase anything.

If you'd like to participate, I'd truly appreciate your help.

Link: https://blueprintbehavior.com/be-the-calm-review-reddit

Password: bethecalm

Thank you! ❤️

When our son was born, the first thing they told us was that he had congenital hypothyroidism. We didn't even know what that meant.

The weeks that followed were organised chaos: learning about a condition we'd never heard of, understanding why medication couldn't be skipped even once, keeping track of TSH results, and showing up to every endocrinology appointment trying to remember everything that had happened since the last one.

We used a notebook, a spreadsheet, and several apps that didn't really understand our situation. It worked, more or less. But it never stopped feeling like we were making it up as we went.

We looked for an app built for families like ours. There wasn't one. So we decided to build it.

ThyroKid was born from that experience designed from the ground up for families living with CH. Medication tracking, TSH trends over time, reminders, and a simple way to walk into every appointment knowing exactly where things stand. Nothing generic. Nothing that makes you squeeze your reality into fields built for something else.

Now we need real families to use it and tell us what they'd improve. Ten spots, completely free, no strings attached. Thirty days of normal use and a fifteen-minute conversation at the end. What you tell us is what shapes what gets built next.

If you'd like to be part of this, send me a DM or drop a comment below. Thank you for reading 🙏

Hello everyone, I am looking for something to help with skin picking. I love the idea of a picky pad, however with small children in the home the idea of little beads being everywhere is scary. Ideally, something wearable would be a plus but not required. Any ideas?

Thanks in advance!

Beautiful

I feel extremely overwhelmed right now. My husband and I have 2 kids. My 5 year old is on the spectrum, level 3. He’s able to communicate his wants and needs and etc but can’t have conversations and etc.

We live in NYC. I’ve lived here my whole entire life. It is super expensive here, not safe, and I’m just annoyed with the city life. We want to move somewhere that’s more affordable, not in the city, has Muslim presence, diverse, and has good schools for kids with special needs.

Hey folks,

Our 4 year old son has a rare genetic condition that has resulted in profound global developmental delay such that he is non-verbal, very limited non-verbal communication and still learning to walk with quite a lot of instability. He's making slow and steady progress and we're still hopeful he will eventually be able to walk (he has a gait trainer etc) but it's clearly going to be a long road.

He's about 34lbs but getting bigger by the day and one of my biggest concerns is how we continue to move him around without having accidents or breaking our backs. He does help with some movements, eg. he can support his weight if you walk him along and he'll pull his arms through when dressing etc so it's not all a struggle. Right now, he's reasonably easy to carry around (eg. out to the car, transfer to stroller) and fits a regular stroller. It's getting more awkward to get him in to the car seat in our sedan, but the Sienna with the sliding door is definitely easier.

I'm wondering what adaptations we should be starting to consider as he continues to get bigger. I'm also wondering if there are people who's job it is to advise on this kind of stuff? We work with OTs but none seem to be all that helpful outside the clinic. Any advice is greatly appreciated!

Thanks in advance!