r/SpecialNeedsChildren

I keep hearing that the plan itself is full of good strategies (movement breaks, chunked assignments, quiet workspace, extra time) but there's no easy way to translate it into an actual daily routine — you just kind of... wing it, or write it on a whiteboard, or keep a notebook.

If that sounds familiar: what does your current system look like? Notebook, spreadsheet, sticky notes, nothing at all? And has switching schools or districts ever meant you lost track of what was actually working?

Not selling anything — genuinely trying to understand if this is a real daily pain point or just a me-problem before I build something around it.

So my son has... basically everything. He's on the autism spectrum, he has adhd, tourettes, ocd, probably ODD. One of the things that is driving me out of my mind is that he developed this weird thing where he would suddenly get REALLY high pitched, like a high pitched squeal while he was speaking. Then it turned into this weird growl. Occasionally.

Now you can barely understand anything he says because he's constantly growling or squealing in a single sentence. It's unbearable because he also likes to talk to himself when he's playing games or watching tv, and he's LOUD. It reverberates through the whole house, and when we're driving it's a real hazard because it'll be quiet then suddenly he decides to talk and either SCREAMS or does an insanely loud gutteral growl and it startles me frequently enough that I think i need to start leaving him home for our own safety.

Has anyone ever heard of such a thing? It doesn't seem tourettes like, because it's absolutely non stop, it's not an occasional tick, like his other ticks.

If you’re the parent of a child with a disability, this piece is for you. I know the questions you’re asking because I’ve heard them my entire life. They’re questions that come from love, fear, and wanting the very best for your child. There isn’t a perfect roadmap, and no parent gets everything right. But sometimes the greatest gift you can give your child isn’t protecting them from every obstacle, it’s preparing them to face the world with confidence. I hope this conversation offers a different perspective from someone who has lived with a disability his entire life. And if you’re a parent who has questions, worries, or simply needs someone to talk to, my inbox is always open. I don’t have all the answers, but I’m happy to share my experiences and hopefully make the journey a little less overwhelming. You don’t have to figure it all out alone.

Parent: My child has a disability. What do I do?

Me: You do your best.

Parent: What if they never learn to walk?

Me: That’s okay. There are other ways to get around. Don’t let one limitation convince them life has to stop.

Parent: I’ll have to take care of them for the rest of their life.

Me: You don’t know that. There are programs, resources, and support systems. More importantly, there are skills you can teach them now that will help them care for themselves later.

Parent: How will they ever make friends?

Me: The same way any child does. Teach them how to talk to people, be kind, listen, and be themselves. Disability doesn’t stop friendship.

Parent: Who will ever love them?

Me: You will. Love them the way they deserve to be loved, and you’ll teach them what healthy love looks like when they find it themselves.

Parent: The world is such a mean place. How can I protect them?

Me: You can’t protect them forever. Instead, teach them how to stand back up when life knocks them down.

Parent: I need to make everything accessible at home.

Me: That’s a wonderful place to start. But they won’t spend their whole life at home. Teach them how to navigate a world that isn’t always accessible.

Parent: I need to find other parents like me so my child can be around kids just like them.

Me: Support is important. Just don’t let other parents’ fears become your own. And don’t let your child grow up believing they should only be friends with other disabled kids. Friendship has never depended on disability.

Parent: What do I do if other kids make fun of them?

Me: You do what you can. But even more importantly, build their confidence so they know their worth isn’t decided by someone else’s opinion.

Parent: What if I’m not around to feed them or help them get dressed?

Me: Then teach them while you are. One day you won’t be there, so prepare them to be independent, not dependent. Every skill they learn today is one less thing they’ll have to fear tomorrow.

Parent: What if I fail?

Me: No parent is perfect. You’ll make mistakes. We all do. Just love them, believe in them, and teach them the skills they’ll carry for the rest of their life.

They don’t need a perfect parent.

They just need one who prepares them to believe they can live their own life.

I have a 3yo with a speech delay and was diagnosed with Level 1 ASD. I am willing to try a holistic doctor and get him tested in general, just in case he has some deficiencies.
Has anyone seen Dr Rebecca Sherry Eshraghi? She is MAPS doctor in Weston,Fl. Is she for real or is this going to be a waste of time? Thanks!

My husband and I are only a few years from retirement and after running many scenarios, it looks like we should have enough with SS and investments to live comfortably to age 90. What's throwing a wrench into things is the complexities of planning for our 25-year-old son's future. He is disabled more by chronic illness than be his autism. He has been on SSI and Medicaid since he was 19. Thankfully, we don't anticipate that he will need any independent living support other than grocery delivery, monthly deep cleaning and maybe a couple of non-medical rides. My husband and I redid our estate plan a few years ago and our attorney set up a third-party special needs trust which currently has a nominal amount of money in it. Our son also has an ABLE account. But I'm still nervous about his financial future, because even if he has a roommate, it doesn't look like DAC would be nearly enough to cover rent and non-food expenses. We figure if we can manage to put enough in the SNT, the successor trustee can move money into the ABLE each year to cover the spending gap. But if the trust keeps taxable income, the trust may pay tax at compressed trust tax brackets. In 2026, estates and trusts hit the top 37% ordinary income bracket at just over $16,000 of taxable income. How can we possibly calculate what assets and how much need to go into the SNT without paying thousands of dollars yearly for professional advice?

Hey all,

We are parents of a special needs adult. My wife and I created a app called CareKeep that is an AI care companion for parents and caregivers — built to help with care notes, appointments, documents, reminders, and the exhausting “keep everything straight” part of caregiving.

Frankly, it was something we wished we had when our son was a child.

We’re not looking for a promo blast or an endorsement. We’re looking for honest feedback from people who understand this world and may have had similar challenges.

Would you be open to allowing us to post to get some feedback from your community? It would be the same tone which is gain feedback instead of selling to your community in any way.

Thanks for considering.

www.carekeep.ai

John and Susan

My current elementary age child has recently been diagnosed with high functions autism, anxiety with panic attacks, social anxiety, OCD and was in an IOP program earlier this year, eats lunch in the office because he cannot tolerate cafeteria. Receiving IIC therapy services through CMO and unfortunately even with many accommodations in 504 including breaks, preferred seating, reduced hw load, counseling, etc has struggled to attend school and tolerate the environment. He has only been able to attend school leas than 2 hours a day for the last month and spends that time doing work in CST office.These are counting as full day absences and at this point has 70+ absences and I have attended truancy court twice with another date next month.
A recent psychiatric eval noted a therapeutic environment may be needed. Recently had first IEP meeting and all offered was 40 mins of counseling a week and ICR less than 2 hrs/ day. I hired an advocate 2 weeks ago because I knew I needed to fight this and she suggested returning the form to I Do Not consent and request another meeting which ai did and now i have case manager and director of student services calling me to "discuss" my request. I notified them in my consent email I hired an advocate and was included on email but they did not reply to include her and now after 2 business days I cant reach my advocate. I do not trust the district at all, they are sneaky and lie and manipulate.

Anyone have a great experience with an advocate that is experienced, knowledgeable and responsive??? I am very desperate. TIA!

Located in Monmouth County

A lawsuit alleges that a nonverbal 13-year-old student with autism was locked in a Menifee school restroom for 5 1/2 hours, mocked and denied food.

The complaint against the Menifee Union School District also names teacher Lancelot Thomas and Hans Christiansen Middle School Principal Steven Melvin. It lists nine allegations, from false imprisonment and negligence to violations of the Americans with Disabilities Act.

Thomas and Melvin could not be reached for comment over the past week. Melvin is listed on the school’s website as principal, but Thomas does not appear on the staff directory.

District officials could not comment on the case, because policy prevents the discussion of pending litigation, spokesperson Devina Ortega said in a Wednesday, June 10, 2026 email. When asked this week if Thomas still worked at the school or for the district, she did not respond.

The federal lawsuit will move forward after a recent attempt by the district to have the case dismissed failed.