r/specialneedsparenting

This may be an odd question.

My daughters PT’s spouse passed away two weeks ago. We have had this PT for a little over a year and have become very close to her. To say this woman is the voice of God to me would be accurate.

I want to mail her a sympathy card. She mailed us a thank you card around the holidays so I have her home address. Would this be apporiate?

I am just curious. I have a 5yo and 1 yo (who are not special needs) and I am 21 weeks pregnant. Just curious if any moms had a hunch something would be up while growing baby.

Hi! I’ve just received a prenatal diagnosis of Holoproscencephaly for my baby girl. I currently live in a state that is not very special needs friendly. If you could move to any state in the US for services and support, where would you go? And WHY? I’m a teacher, and I know I could get a job in another state.

My just-turned-3yo child has a rare genetic disorder (Cohen’s) which includes a learning disability which is normally moderate - severe but he’s presenting on the low end at the moment.

We can’t get him to follow rules unless it’s something he’s invested in. He’ll either completely ignore us, laugh at us, have a tantrum, or do the thing once and refuse to do it the next time we ask.

I’m at a loss because it feels unfair to discipline him if he genuinely isn’t understanding the behaviour is wrong or what we want him to do, but a lot of the time I feel he does understand and he’s choosing not to do as he’s told.

For the record, he isn’t badly behaved. He isn’t violent or rude or throwing tantrums in the supermarket. He’s incredibly sweet tempered 9/10 times. It’s things like asking him to pick up his toys, or to go to the potty. He’s started snatching toys from his sister and refusing to share. All quite developmentally normal stuff tbh, but our methods aren’t getting through to him.

We only got his diagnosis recently, but we’ve definitely been lax on expecting him to follow rules before hand. That’s entirely on us, hands up. We’ve always known something was off and have given him leeway because of it. He’s also incredibly charming and can pretty much get away with murder by smiling.

We have a developmentally normal child who is beautifully behaved but we just can’t reach him in the same way.

When it comes to it I just genuinely don’t know how to teach him to follow the rules/right from wrong. I’m in desperate need of guidance!

Me and my husband have an almost 2 year old who was diagnosed with a de novo genetic condition. He is unable to stand or walk yet, and is total care basically since he’s not your typical 2 year old.

We’ve both had genetic testing and his condition was de novo. We then had more genetic testing and none of us are really carriers for things to be worried about nor would IVF be helpful for us.

We’ve always wanted two kids, but I’m also scared what life will look like. Considering I still carry him everywhere, have to watch him 24/7, etc…

For those who have similar stories, did you have another? How did it look like? How was the adjustment?

Has anyone had any experiences, good or bad, with your states early intervention program?

My daughter is 16 months, and hasn’t said any words 😢. The pediatrician doesn’t seem concerned because she has shown other age appropriate communication. For instance she can respond to her name, points, can wave, identify certain body parts, etc.

I can tell she knows what certain things are (book, fave toys) and what not. We read pretty much every day. But still no words!

Part of me wants to relax (haha) and trust that the words will come eventually. I myself was a late talker so I know it doesn’t necessarily signify anything, but still I worry about this a lot.

I’m considering reaching out to early intervention, but honestly I’m a little wary about voluntarily seeking gov services. Which sounds insane but I can’t explain it. It just makes me nervous.

Am I overreacting/worrying too much? How were your experiences with EI. Just looking for some insight here. Thanks!

I am struggling with my daughter’s learning deficits.

She just turned 6 and in January she was diagnosed with autism level 2, mixed expressive receptive language disorder (but we were told it may be a delay and covering for ADHD) and anxiety. Since starting guanfacine, she has finally begun remembering what she’s being taught! So far since March she has learned the alphabet, the sounds for the letters and can give a word for each letter. I am over the moon! She’s done 4’s all day preschool and is at the end of full time Young 5’s. And she has 3 older siblings. So she’s had a LOT of practice and tons of exposure to numbers and letters and reading.

Her struggles with the alphabet are straightening out. Now we need to work on numbers. Does anyone have a good way of teaching reading and numbers to a kid who is having a hard time picking them up/processing them/remembering them? I’m thinking games or shows or materials? She is not easy to sit down and teach and can sit about 15 minutes once wrangled into it. I am looking for a new way to present old information, or ideas on something you know about that has really helped with your kid. It breaks my heart to see her lagging behind and we have all summer to gently work on these concepts before kindergarten.

Thanks for any feedback! I know the moms here get it better than anyone out there.

My baby has been diagnosed with a genetic condition and if one more person suggests this poem to me I'm going to scream.

Sure there may be good things about Holland but this is my only child, conceived through IVF after years of infertility and I really fucking wanted to go to Italy.

Hi everyone,

My daughter struggles significantly with dyscalculia. Managing pocket money, calculating change, and paying at the store used to cause her severe anxiety. We tried so many financial apps, but they all rely on abstract numbers, mental math, and budget graphs which just don't work for her brain.

So, I spent the last few months building a tool specifically for her. Instead of numbers, it uses pictures of actual, physical coins and bills (it supports USD, GBP, EUR, AUD, CAD, NZD, and SGD).

But the feature that actually changed everything for her is the voice guide: the app gives her step-by-step audio instructions on how to pay and what exact change to expect. It actually pauses and waits for her to physically complete the step before moving to the next one. It completely removed the math anxiety from the equation.

I am now trying to figure out if I should take the big, bureaucratic step of officially publishing it for other families.

I'm not posting any links here because I completely respect the community rules and don't want to trigger any spam bots! But I did set up a simple waitlist page to test the waters. If this sounds like a tool that could help your child gain independence, please let me know in the comments or send me a DM, and I’ll gladly share the page with you in private.

Would love to hear your thoughts!

im not sure if this is the right place to post this but im hoping that it is and that someone can help. Im a single mom of an amazing 9 year old girl who has Myelo (SB). My daughter is my world and my heart is so heavy and I’m so sad sometimes when I think about how lonely she is . She doesn’t have any real friends that talk to her and she is always on the outside looking in . I’ve tried for several years to make plans with other girls in her class and in the beginning they were all about play dates etc with my daughter . She struggles with social stuff and I’m assuming it has to do with her having hydrocephalus . She isn’t able to really hold any real convos with other kids and she pretty much does the whole “cocktail party talk “ only . its hard to explain so I hope someone on here knows what cocktail party talk means lol . Also with her afo’s , balance and mobility challenges she’s been bullied a lot . She’s been ridiculed , ignored a lot when trying to talk to other classmates , and even physically assaulted (a boy shoved her down when they were playing outside at recess-this boy also calls her weak, tells her nobody likes her and that she doesn’t matter ).

I have had her involved in things outside of school but she still never is able to click with other kids tried everything and I’ve searched online for years to find ways for her to meet other kids that have spina Bifida and other disabilities and it really hasn’t helped either . Also any special needs groups near us don’t have any kids that have physical disabilities and I really think that if she made a friend that she could relate to it would help her so much . now that she’s older she’s starting to tell me how she isnt a normal kid and that she isn’t smart and that she can’t do anything that all other kids can do . Shes so lonely and im her only playmate which of course I don’t mind being but she NEEDS a friend her own age etc.Also I don’t drive right now so i cant just hop in the car and travel out of my town and take her to any adaptive sport or special needs groups.Ifeel like im failing her. if anyone that reads this has any advice or ideas I would greatly appreciate it . Also if anyone has a child with Sb around my daughters age or evena little younger or older and if you are in Michigan please reach out to me .

I’m a very open person, and I’ll tell my friends anything. But lately I’m finding I don’t even want to vent to them about parenting my special needs/disabled child because all I get is “you’re a great mom…. This is all valid” ok. I never said I wasn’t a good mom. But this is HARD. And I’m exhausted. Mentally and physically and emotionally. And now I’m contemplating seeing a therapist. For context- my daughter is 5.5 and has a chromosome deletion, she can sit but is not very sturdy. Non verbal and not ambulatory. I’m burnt out. She’s so heavy. She’s been so grumpy doing normal daily things we’ve always been doing. I just feel in a rut. She not capable of helping with dressing and eating and omgggg I’m so over it right now. I need HER help. She can’t. And I’ll get over it but lately, these last few weeks have been hard. We are about to have summer break and I’m at a loss of what am I going to do with her every day to keep her happy. She LOVES school. She has 3 aides to help her and keep her happy. At home, it’s just me. 🫠

My almost-4-year-old daughter is level 3 and a full-body-rock stimmer. She has slept exclusively in a Cubby Bed for the past two years. This summer we are going to stay in a cabin up north for three nights - a trip I booked before I even paused to consider how sleep would work. (We were invited by family who are also renting a cabin). Does anyone have any ideas or advice on how we could simulate a Cubby bed while traveling or just any sleep suggestions for our daughter? Any time we’ve attempted to have her sleep in a normal bed she just rocks against the headboard endlessly and will not settle.

I am going to try to give as much context as possible here, as I am genuinely looking for any advice but I am exhausted and frustrated and I don't want the entire post to seem like a rant.

Older kid, 7, ADHD/anxiety/possible ODD, has absolutely never slept well, not since she was a toddler. We had an extreme family trauma when she was 3 and since then I have worked with doctors, therapists, and sleep counselors. For a little over two years now, she can fall asleep ok, but has regular night wakings and can be very destructive - tearing apart toys and books, flooding the bathroom, ripping photos off the walls, etc. The destructive behavior has improved, but it's not gone.

Five year old, TBI/Epilepsy/Cognitive Delays, had no sleep issues until the past few months. Always napped, slept through the night, or if she woke would go back to sleep reliably. But now she is up with sister almost EVERY SINGLE NIGHT. This has been going on for seven months.

Five year old absolutely can not function without sleep. Being over tired triggers seizures. She falls asleep in school. She's had huge regressions with her behavior therapist and toileting and has gotten violent a few times.

I am absolutely beside myself. We are all exhausted. They used to share a room, and separating them has not worked because whoever wakes up at night now will tear the house apart to find the other. They both fall asleep at bedtime very reliably, but once or twice a night one or both of them wake up and it becomes a madhouse.

I have tried incentives, sticker charts, white noise machines, magnesium and melatonin, pushing back bed time, moving up bedtime, giving medication at different times, natural consequences (if you don't sleep you'll just be tired and cranky, we can't go to certain events if you haven't gotten good sleep,) quiet activity options, sleeping with them, not responding.... And I am now in night six in a row of waking up at 2am and no one has gone back to sleep.

I don't know what to do.

My son is 4 and pretty soon I’m going to need to turn his car seat around to be forward facing. The problem is, he gets tired of holding his head up after about half an hour and I don’t want to leave him just slumped forward or something so I’m trying to figure out what you‘re all doing for carseats when your older child has less than ideal neck/head control. I plan to ask our pediatrician about it next time we see her but I like to go in with ideas too :)

My child is 8, about to go into third grade. I personally believe he needs to be retained because he is barely progressing towards any of his goals this year. Idk how they are passing him through, and his dad doesn’t agree that he needs to redo second grade. It has been the shittiest year imaginable. His teacher had a stillborn full term baby so he had a terrible a sub for 3 months , then his yea her comes back and you know she’s checked out. I finally got him evaluated by a psychologist and he has real diagnosis that I need support from the school with and it is downright DEPRESSING the lack of interest or support I have gotten. It’s the end of the school year so idk how it’s going to go getting accommodations set up. He is moving from primary to elementary next year and everything just feels so overwhelming. My main thing is it just feels like no one really cares about helping him. He is very high functioning adhd/asd and well behaved but has learning difficulties with writing and spelling and working memory. He needs extra support with completing work and getting the most out of his education. It makes me sick that im forced to send my child to school but the school doesn’t seem interested in helping him succeed even when I have proof that he needs help 😭

My 11 year old is cognitively, emotionally and mentally developmentally delayed. His last testing showed he functions between 3 and 6 years old depending on what the task is.

Our current issue is hygiene, specifically changing clothes. It's not a specific item or fabric or anything we can pinpoint but he will NOT change his clothes. He will put on the same outfit he wore the day before unless we hide it then he will happily pick a new outfit.

Roll in the grass? Play in the mud? Spill food on it? Have a bathroom accident? None of it matters and he will put on the same underwear, same shirt, same pants, same socks. We do *not* care what he wears. He picks his own clothes when we shop, he picks his own outfit. We've tried different fabrics, different detergents, different methods with help from pediatrician, psychiatrist, his therapist for speech, occupational, and counseling. This isn't new, it's been this way for years.

The most foolproof method we have is a box under our bed and after the bedtime fight (the usual im not tired I need a drink, I gotta pee from him and his brother) we we grab his dirty clothes and put them in there. He'll look for his dirty clothes for about 20 minutes then pick a new outfit without too much fuss other than him and brother arguing over who's shirt is whose.

Does anyone have any ideas we could try? I don't want to go into what we have tried. I'll try anything again. I need to get this dirty clothes box out of my room but it's the only place we have that he hasn't found it and no, putting the clothes outside is not an option and neither is daily washing because we need to use a laundry mat.

My 3yo son is autistic and has sensory processing disorder. His sensory seeking tendencies vary from tactile, oral, visual, and proprioceptive. Most of his habits are harmless, but his oral sensory needs have become an issue in our household. We still allow him to have a pacifier because the alternative is chewing/ruining his clothing or biting us (mostly me— not in a malicious way, he does it when he’s overwhelmed or excited). The pacifier has recently become even more of a problem— he likes to flip it in his mouth so the nipple is at the roof of his mouth and the plastic part juts out. He then will press his mouth into our bodies which is not only extremely painful, but causes the nipple to come loose from the plastic. I’ve tried teethers, plastic teething necklaces, terry cloth teething necklaces, crunchy food, cold food, etc but nothing seems to give him the oral input he needs. Any advice would be HUGELY appreciated, we’re at our wits end and don’t want to keep spending money on (weirdly expensive) pacifiers. It should also be noted that he has a significant speech delay and does not understand when we tell him to “stop doing that”.

TL/DR my autistic son has an extreme need for oral sensory input and I don’t know what to do!

Hi there,

I'm a teacher and tutor building an app to help parents track child behaviour patterns for early intervention.

Looking for advice on whether this is actually good and worth pursuing.

Early Patterns is a simple app for parents who've noticed something going on with their child but aren't sure if it's a pattern or just a phase.

Every time something happens, a meltdown before school, a refusal at dinner, a really great calm morning, you log it in about 30 seconds. What happened, what triggered it, how intense it was, how it settled. You can type it or just speak it and it transcribes for you.

Over time the app quietly builds a picture. It starts showing you what keeps repeating, what tends to come before it, and what seems to help. You stop relying on memory and start having actual evidence.

When you need to talk to a teacher, a SENCO, or a doctor, you generate a report. It's structured using the ABC framework that professionals already use, Antecedent, Behaviour, Consequence, so the person you're sitting across from immediately understands it and takes it seriously.

It also captures the good days. Because what's working is just as important as what isn't.

It's also for parents who already have a diagnosis but are stuck on a waiting list. That in-between place where you have a piece of paper but no actual support can go on for years. This app helps you keep track of whether things are getting better, getting worse, or whether something new is emerging, so that when you finally get that appointment you're walking in with months of real data rather than trying to piece it together from memory.

Your data is completely private. Everything is encrypted, stored securely, and never shared or sold to anyone. This is your child's information and it stays that way.

It won't diagnose anything. It won't tell you what to do. But it will make sure that when you walk into that meeting, you're not just a worried parent trying to remember three months of difficult moments. You're someone with evidence. And that changes everything.

Would love honest feedback. Is this something you'd actually use?

Thanks in advance