A while ago I asked for ideas here on how to plan a birthday party around my son's special interest of exit signs. And there were so many wonderful ideas shared, I wanted to give an update. He had a Race to the Exit obstacle course party, and had a blast! In the past birthdays were a little challenging. He would often get over stimulated and melt down. Or collect all the balloons and not want to share. Today we had over 40 family and friends come to celebrate and it was so amazing to watch him he play, talk, share, and, yes, make a quick recovery from a mild upset of not wanting to get out of the obstacle course 😆 overall just so proud of my guy. Thank you again to this great community!

I’ve aged what looks like 20 years. My son is on a boat load of meds. We see doctors ever week for adjustments. They just can’t get it right. We even did a trial period of no meds and that was a nightmare. He goes 2-3 days in a row with no sleep at all then on the 3rd or 4th day he will crash for maybe 2-3 hours then will be up at 2-3 am and the process repeats. Hospital has given him adult dosages of versed with no effect. He’s only 7. He has this need to climb up furniture and jump off of it. It’s getting harder to contain him. It’s dangerous just for me to take my eyes off of him for 5 minutes to take a shower. We’ve exhausted every avenue. Every treatment even stem cells. Nothing has helped. I feel like my body is giving out from the lack of sleep. The lack of urgency of recognizing how horrible the quality of life is for family’s with a child with severe autism is so alarming. This isn’t the autism is a super power kind of autism. We are struggling here. Our local respite offices have told us they are all at capacity.

He’s almost 2.5 now but I still think about it.

I knew something wasn’t right with his development. I used the CDC Milestones app, I did a lot of reading to understand developmental milestones and he kept missing them.

He slept great as an infant … because he couldn’t roll around like other babies.

We slept great when he was a baby … because when he did wake up, he laid there quietly, because he couldn’t communicate.

He was diagnosed “low muscle tone”. He was often just 1-2 months the “normal” milestone window except for communication which never seemed to progress. Every time I brought my baby in public, brought him around family or friends, I would inevitably get the comment “Wow he’s so quiet/easy” and often it would be followed “That’s so unusual for a baby his age”.

By 9 months it had been building on me for a while. “That’s not normal” became a little ear worm I couldn’t ignore. I spilled my guts to his Pediatrian and told him I was concerned about the missed milestones and I was worried because he was so easy. He told me having an easy baby was a blessing. He told me my son would likely catch up.

A few months later, my son had a sick visit with a different pediatrician in the office who wrote that she observed signs of autism. I think he was 14 months old at that time. I spiraled.

Ultimately I’m grateful the other Ped caught the signs (not at all grateful she decided to write that in his visit report without mentioning ANYTHING to me about it).

Eventually, at 18 months, he was diagnosed.

I don’t know why I’m writing. I’m frustrated that my concerns were dismissed but I also recognize that there probably wasn’t anything he could do at 9 months to help us. Well, who knows - maybe an OT referral? Anyhoo thanks for reading.

My six year old’s been having real hard time since over a year now .. the last three months have been hell! My kid’s non conversational and minimally verbal. He was generally very clingy to me but not so much recently and I was missing it. Today I tried to snuggle up and out of nowhere .. no prompting at all … he just hugs me tight .. looks into my eyes and says “Dada .. I love you” … something healed inside me just like that 🥹

My son is a GLP and i took him to a behavioural therapist because weve been seeing some new behaviours. This therapist sorry to say was a complete idiot especially for someone who says theyre very familiar with working with ND kids. Anyways she had the most annoying and loud voice and kept saying “benjamin sit” (changed the name) in a very heavy accent.

Now my son keep saying “Benjamin sit” in the exact same accent, tone and loudness lol and its driving me crazy but the accuracy of the voice is insane.

There are so many moments, but here’s one I randomly thought about recently.

Around last Christmas, we were buying toys for the kids (with the kids there, of course lol), and one of the toys was an infant toy. My son loves things that talk and light up, so it was actually the perfect gift for him. My son had just turned 5, and my youngest was 1.

The cashier said something along the lines of, “I know the little one will love it!” I just smiled and said, “I’m sure he will!” because honestly, what do you even say to that?

I don’t have any hard feelings toward the cashier at all. She had no way of knowing, and I know she meant nothing by it. But it was one of those moments that felt bittersweet and put his differences into perspective.

Another moment that really stuck with me was when I saw someone I know post their son’s kindergarten assessment scores. He’s the same age as my son, and he was assessment in all areas. My son’s score on the similar assessment was zero, which is the complete opposite.

Don’t get me wrong, I am very proud of my son and the progress he has made! There are just those moments that you remember so clearly and the feelings that came with it.

What are some moments like this that stuck with you?

So here's my question: How much support is the right amount? I posted here a bit ago (my first time) and I appreciated people's insight. It was the first time I felt like others 'got it'. My daughter is 37, married with one child and pregnant with another. Her husband is wonderful, but exhausted. My daughter is smart and is good at things like decorating, art, research, writing, and so on. She does not have great social skills and is very critical of others, making her friendships few and far between. Also she is very easily overwhelmed and I've been the person who is the security blanket. I've supported them financially a lot, because although her husband makes good money, he also has massive student loan debt, car debt (not making great car choices) and so on. She does not work. There are always excuses for why she does not, but the truth is that she gets too overwelmed and finds a reason to leave. She keeps adding stuff to her pile and makes impulsive decisions when she is stressed. I know they would LOVE to just move in with me so I could be parent to her, her kids, her dogs, her cats and such, all while working a demanding job and being a senior citizen with arthritis. But I know that when she spirals, she causes great havoc for her husband. So, I do what I can to prevent said spirals by trying to help. It seems to never end. Most people do not get the autism part, and how much that impacts this otherwise normal looking woman. She has sensory issues, social issues, and needs a lot of support.

​

​Hello everyone,

​Before writing this post, I spent a lot of time searching online, but I realized that asking real human beings with experience is far better than relying on a search engine.

​In my country, mental health services and specialized psychological care are poorly developed and rarely prioritized, which led me to seek help here on the internet.

​My brother lost his ability to speak when he was 4 years old, after having completely normal speech development prior to that. My parents took him for various medical tests—EEG, MRI, hearing tests, vocal cord examinations, and every other test imaginable. Every single result came back completely normal, leaving us utterly confused.

​Eventually, a psychiatrist looked at him for just a few seconds and declared that my brother had autism and an intellectual disability. Because my father is uneducated, he accepted this diagnosis without question and made no effort to seek psychological therapy or rehabilitation for him. He felt embarrassed by him, rarely taking him out, and kept him isolated at home

​When he was younger, I used to leave for school and come back to play with him after he spent the whole day alone. I tried teaching him and encouraging him to speak. Sometimes he responded, and other times he didn’t. But there were times he actually engaged with me and said words like "Mama", "Baba" (Dad), and "Batata" (Potato).

​Now he is 17 years old—a young man who remains non-verbal. Unfortunately, his condition has deteriorated due to years of staying confined at home. He has become aggressive and sometimes hits us, only to show deep guilt right afterward. Through my research, I understood that this aggression is his only way of expressing his intense frustration and boredom. He is currently taking Risperdal as a sedative

​Despite all this, he is just a normal, extremely intelligent young man. He loves music and the sea. After endless pleading, my father or my brother-in-law would take us to the beach or an amusement park once or twice a year, and he would be filled with pure joy

​I am currently a university student, and I feel completely lost on how to help him. My brother loves me deeply and looks at me with innocent eyes, seeing me as his lifeline.

​Based on my research, I strongly doubt he has autism. He is extremely social, loves to hug, kiss, and touch my mother and father, and adores children and animals. I suspect he might be suffering from Childhood Apraxia of Speech (CAS) or a form of aphasia rather than autism.

​If there are any specialists or experienced caregivers here, please guide me on what I can do to help him at home. Also, if you have recommendations regarding supplements like Omega-3 or Folinic Acid—a woman I know gave these to her son, who had the exact same condition and was older than my brother, and he actually started speaking! However, I haven't dared to give them to my brother yet because I am afraid for his health, especially since he has epilepsy

​Please, to anyone reading this, guide me on what steps I can take. Any advice would mean the world to us

​Thank you so much

On the one hand, I love my son more than the air I breathe. In the 5 years he’s been mine, he’s expanded my heart beyond what I thought was possible. Though he cannot speak, I hear him. I know what he needs and wants and I advocate FIERCELY for him.

On the other, days like today where he shows literally anyone else affection really makes me regret becoming a mom. It’s true.

So, today started at 4 am. My husband will just bare hug him, but I could tell he was hungry, so I got up and made him breakfast. He fussed at me when I laid on the couch because he wanted to be let in to the laundry. No snuggles, high five, kiss, nothing. Just feed me and let me get into shit.

Later that morning his grandparents surprised us with a visit. He was soooooo happy. Grins and smiles ear to ear. At one point, he indicated on his AAC that he wanted squeezes. They didn’t know what that meant, so I showed them. I showed them. Because I know. I listen. I learn. I give him what he needs.

Yet, when it comes to me, he yanked on my hair or scratched my skin five times today for a myriad of reasons. Once becuase he hit his head several feet away from me on the doorknob, and I noticed. I came to console, and he attacked until my husband pulled him off. He didn’t go after anyone else, just me.

I take him to swim practice alone. I advocate for his right to a disabled parking spot (a coffee company was using the only available disabled parking spot for loading their coffee machines. Excuse me, no.) and later after his lesson he hits me while trying to get him dressed.

Then, on a date with my husband and all I’m doing is buying things for him that I know he will love. And I’m so excited to show him! Like a fucking simpleton because it won’t make him abuse me any less.

Then, tonight I’m helping him get dressed into his pjs. Again, yanks on my hair while glaring at me. Out of nowhere.

Like, fuck it. There is no one on this planet doing more for him and this is what I get?!

His grandparents show up once every three months and all giggles, smiles and love for them. I take him to every doctor appointment, therapy and lesson that I sourced, schedule and paid for, and I rush to comfort him when he needs it for any reason. Yet, he hits, scratches, pulls my hair out and abuses me.

I’m not asking for a lot. But when I open Instagram in tears and see a little boy his age or younger describe a sunset so beautiful that it looks “like mommy” and see him picking flowers for her, I want to scream, throw up, and give up. Fuck.

My son was born 31 weeks 4 days premature. He spent 2 months in the NICU with no complications. Basically he was a feeder and a grower. Fast forward to today and he is 22 months (20 months corrected age). He will be 23 months (21 corrected) on the 6th of next month.

For starters he has no spoken words. He babbles constantly, grunts and makes other noises as well. He does not wave “hi” or “bye” and he understands “yes” and “no” to an extent but he won’t shake his head or nod when we ask him if he wants something. Usually he will point to things he wants reaches to grab it or he will grunt or scream. For example he will run to the refrigerator and put his hand on it and grunt if he wants milk. He also has no pretend play but he plays with his toys as normal and I do not see any unusual play patterns like lining up or anything.

He pretty much is reaching all another milestones as well (eye contact is great, points to show interest and share with us, follow simple commands). He knows who mama and dada are and he will point to us and also will point to body parts we name and animals as well. He is running and climbing like crazy and loves to interact with people although he is shy at first. At the park he will keep to himself but will watch other kids and loves the swing and I usually place him in the slide and he loves going down it as well.

We got him early intervention two weeks ago and they said he does not qualify. They said if he has no words by January to contact them which to be honest I don’t see him improving in that time. It was extremely frustrating for me and I don’t understand it. We also did a M-CHAT and he scored 1 because of no pretend play.

I guess what I would like to know is if I’m dealing with autism? I know it is a spectrum and I know it would be impossible for reddit to diagnose him, but I’d like to get some clarity if possible. I feel like I’m being left in the dark by the medical professionals and because of his prematurity I want to be extra careful. Would like to hear your experiences as well. Thank you guys!

I always post sad moments so I thought I’d share something lovely.

My daughter is 5, autistic, learning disability , gestalt processor and non communicative in her verbal language.

I struggle with taking her out alone , she uses a wheelchair pushchair , ear defenders and reins. Today was sunny with trickles of rain so I decided to just suck it up and take her 2 minutes down the road to the soft play. She wore her reins and walked perfectly with the expected reactions to some loud noises .

We played in soft play for an hour as it was very empty so she loved it. We walked to the shop next door and she got some sweets. I was so happy, proud, I genuinely felt so “normal” , just a mum and her daughter having a day.

We walk the 2 minute walk slowly back And then I hear her say “happy” as she smiles to herself holding her sweets. I honestly had to hold my tears as I replied back to her “oh you’re so happy!”. She never tells me how she feels, I usually cry because she can’t even tell me her favourite colour let alone emotions. We had such a good day with no meltdowns and I can’t wait to do it again.

I’ve just moved into a new home with my baby (7m) and (6yr) son, my son is diagnosed with autism and ADHD and can be abit loud he makes the same noise in a pattern and melt downs can be loud, I did let her know before hand what my child can be like, we aren’t noisy at night at all and we have just about tackled a good bedtime routine which he seems okay with, she has pulled me up about the noise in the day and has been ignoring me since, I walked to my car last week with my children and she turned her back and spoke with the other neighbours and they all looked at me so possibly I was mentioned, what can I do? I don’t wanna be at war with my neighbours and I don’t want to be on bad terms 😩

Hi Everyone,

New to the group and in desperate need of help/suggestions. Our 8 yr old has been having more intense behaviors that lead to her throwing her body into doors and walls, slamming the door into the wall or other doors, and kicking the doors while laying back. My apartment doors are mainly split in the frames and dont hold closed anymore and walls with holes. Does anybody have suggestions on items to help to absorb the shock and reduce damge? We are hoping to have these damages repaired and want to take the proper precautions to keep it that way.

I'm sure most of us have heard the news about the tragedy that occurred in Bend, Oregon. It has always been in the back of my mind since my 7 year old started pre k (autistic lvl 2, pre-verbal) "will she be able to keep quiet" "will she be able to follow directions" "will she run if necessary" and my mind just comes up with every possible scenario and hearing that my worst nightmare happened to 5 other families has just torn me apart. Last year I really considered home schooling her but she loves school 💔 my heart wants her to have the best educational experience but I also want to keep her as safe as I possibly can. I don't really know why I'm posting this but I feel like everyone in my life likes to just sweep these things under the rug and not have real conversations, I guess I'm just looking for reassurance that I'm not crazy to feel this way

If anyone is open to talk, that would be great.

I’m honestly really struggling atm and would love to meet some people in the same boat as myself ☺️

My son is 8. In the house is Me, mum (Wife) and or other son who is 11. It's a very loving house and a stable household.

Me and my wife have been told by the school he has a severe learning disability as well as autism. I suppose I always thought that things might get easier. I am now worried about his outbursts as he gets bigger. I have visions of him being a teen and becoming very strong. I'm over thinking the worst outcome but right now I can't help it.

He doesn't hit out, but he can become very frustrated and can't imagine what these outbursts will be like when he is maybe going through hormonal changes etc.

He's a really loving and adorable child but he can be exhausting and challenging at times

Has anyone else been through an experience like this or is going through it?

My daughter is 8, nonverbal, level 3 ….. she’s showing signs of fatty liver disease. She is obese. She is also suffering from constipation. I think she obsesses over food. She watches mukbang (oriental people slurping and smacking food) and she makes “mmmm” sounds while doing so.

I can not keep her out of the kitchen - in the food. She’s either wanting to eat or grab stuff she can combine to make a mess. She comes in from school and ramsacks the kitchen. I’ve tried having her something made when she gets home off the bus and she goes directly to the pantry for a can of spaghetti-o’s. Everything has to be smothered in shredded cheese.

I just got done looking at door locks (our pantry is like a closet space with a door) and refrigerator locks. The door lock is a fingerprint entry. I can only imagine she will break either or both like she has done as a toddler. My real concern is how this will make her feel. Shes clearly not starved and making changes to her foods hasn’t helped - doctor asked us to because of her weight and rapid weight gain. She eats like a bird mostly but it’s what she’s eating. The eating like a bird is what’s worrying me too ….

For example - if I do use a lock - she comes in from school and wants one of the little 6 inch personal frozen pizzas but she only eats the toppings off of it. (Cheese, pepperoni) she’s clearly not full. No one would be. This is the type of stuff that leads to her in and out the kitchen nonstop.

What do I do??? Food is so expensive and sometimes we have to go without our favorites and it already makes me feel horrible.

I am not ok. I just found out the recent school shooting in the US was a kid who targeted a special education class. The kid was apparently in that class when he was younger. I cannot cope with this. I cannot handle this I’m breaking. Who goes after special education kids? Makes me absolutely scared to send my kid to school who is in a special ed class. My heart is just absolutely breaking for the families and the community. I was not expecting the news to hit me this hard. This one hit too close to home.

hi everyone i’m 24 with a 21 month old son who i’m having a very difficult time understanding when it comes to his tantrums and just overall behavior

the tantrums are long and can last well over an hour but its just him on the ground kicking and screaming and its sometimes followed by him sitting on the couch rocking back and forth

he doesn’t really play with his sister or even in church nursery when we go pick him up he’s just doing his own thing standing there by himself

i nursed him til 18 months and he does not know how to self soothe. multiple bottles at night and me having to comfort him back to sleep

he’ll wave to people but is shy at times. my husband has adhd so is this just him showing signs of that or is this something i need to to breathe about cause “he’s just a boy”

*even if this is not looking like autism any advice is also much needed.
people are constantly saying “boys develop slower” but something doesn’t feel right when i look at my son and its getting to me

The following is an open letter to Cubby Bed.

As the parent of a non-verbal six-year-old with level-three autism, and a cat burglar-like set of splinter skills for eloping, I want to thank you for your intrepid design of the patented Cubby Bed. The steel frame, dual mesh fabric doors, and tensioned walls are a Godsend for parents whose tortured, sleepless nights are a thing of the past.  

Not me, though.

I’m still sleepless.

You see, despite the doctor writing a rather compelling letter of medical necessity and prescribing your Cubby Bed, we were informed by your company that you required a letter from our daughter’s physical therapist. The problem being that our daughter no longer has a physical therapist.

I’m sure you’re aware that autism is a bespoke condition affecting each individual uniquely. Our daughter, for example, is affected linguistically, while physically, she could likely win American Ninja Warrior. That is to say she is arguably better at eloping than a child needing OT or PT. In fact, her non-verbal status means she sneaks away silently.

Again—Ninja.

Just last night, I shot up at 2 a.m. to the sound of sloshing water in the hallway bathroom. I knew she wasn’t drowning because I could hear her proclaiming herself “king of the shitter!” When I opened the door, there she stood—both feet in the toilet bowl where my 12-year-old son had left a pair of giant turds unflushed.

Obviously, the next hour was spent cleaning the kid, the tub, the toilet, then myself. I tucked her back in bed where she lay and hummed until 5:30 a.m.

Now, she had a physical therapist some years ago. A man I even attempted to bribe for a letter of medical necessity, to no avail. Something about ethics.   

I asked my wife about just buying your Cubby Bed outright. She informed me it’s $16,000.

Well, as you can imagine, that’s not so doable in this adversarial economy. So what are we to do now? As tempting as it is to put a cloth over her mouth like, hey, does this smell like chloroform to you? I don’t think I’m built for prison.

Plan B, where we heavily invest in straitjackets and fuzzy handcuffs, seems equally frowned upon by the legal system, so I am left with no other recourse but this letter.

Examine your conscience. And your policies.

I can’t imagine what erudite reasoning a physical therapist with a master’s degree can offer that trumps a bloody doctor’s Ph.D. Would you consult a chiropractor about a gallbladder surgery?

I hope your pillows are hot!  

-SK     

My step son (7) has been waiting 2 years for his autism test and we finally have it Thursday’s.can anyone tell me what I need to bring what happens and what happens after. This has been a very uphill battle. He didn’t talk until he was 4. He stems and has very bad behavioral outbursts. But he’s also been through some trauma. He has urinated on me a few times and still has bathroom accidents where he will just stand there and poop himself. He screams and hits me and his dad often and it gets worse when he’s supposed to go to his moms and she doesn’t get him. He has put cleaning spray in my sprite. He doesn’t respond to time outs or any punishment. He doesn’t feel pain and I’m almost convinced of it, because when he was little and got put in time out he would rip his diaper off and pull his parts to his belly button. He didn’t get potty trained until he was four. He is very behind in school. He doesn’t sit still or focus on anything for more than 2 minutes. However, he is very good at math and is ahead by a year in the subject. Can anyone tell me what to expect?

Background: my child was a normal developing baby. We had no worries regarding milestones. It wasn’t until 22 months I noticed we were behind in speech. We had EI evaluate we didn’t meet the need for it (relief). Then at 2, we were still behind. Not really any words just sign language. So I pushed for private speech, despite being told to wait by our pediatrician.

Well… we are 4.5. We became potty trained at 3… pooping can still be hard (they are a great eater but we sometimes over do it with fiber and the looseness can make it hard either way little language).

We do pretty well at preschool, we have great receptive language (understanding), we have amazing spatial awareness (very visual learner, doesn’t get lost), we have quirks (we love cause and affect play - jumping and dropping objects).

We notice other kids but beyond chase and parallel playing we don’t play with kids…

We self regulate very well, we don’t have big meltdowns, and we are amazing safety awareness and don’t elope.

We eat very well (fish, bananas, humus, avocados, smoothies, pasta, meat etc). We use utensils, drink out of cups…

Our expressive language is not there. We used to label things but have now moved on to functional language. We can say “I want more.. help…please… eat, yes, no, ready set go, three, open, daddy, mama.” We still don’t say grandma, grandpa, sister, and have said things but inconsistently.

We have never lost language, more we have learned core words and dropped others or those words are hard to say on demand… We vocalize well (different sounds, constants, vowels…). I am wondering about Apraxia of speech…

Why am I writing this? Because I had my child young. My pregnancy was not hard. My baby had no signs but language is the biggest of all which affects his interactions with others.

When we were on the swing set and I started walking with this sister… they got upset. They wanted to come with us to the playground part, held our hands, they want comfort from mom and dad. They seek us out… they have made connections with teachers…

But with their autism diagnosis coming up… I’m dreading hearing “we don’t know what the future holds or expect them to live with you forever, never make friends, never be conversational…etc.

I’m mourning my baby, while I strive to be their biggest advocate and show bravery in my face.

We are in speech therapy twice a week, and we’ve been doing DIR once a week (which is exhausting and I’m thinking of just adding on one more day of speech).

I’m scared for this eval… scared for kinder next year… I’m scared of the unknown.

Can my child grow if language develops?
We are trying an AAC but they would rather try to talk or communicate with us directly. But the words can’t seem to come out.

A kid came up to them… they looked at them… but didn’t wave and ran over to us. My heart :(

Hi dear parents!

I am here to take advice from experienced parents. My son is 9 now

He never had this mouthing related sensory issues. Just last year, he started this putting his shirt or T's collar in mouth and he bites on pencils. I try to include raw vegetables and nuts in his diet. I know chewy tube is a solution but it doesn't look appropriate in our society. So is there anything else that you did which helped. How frequent one should give crunchy foods. Does oral massaging help? If it does, how frequent should it be done. He does it mostly when his bored and free or while doing school work.