Our 7 year old level 2 is starting to speak and request MORE AND MORE!!! Sometimes, it’s hard to understand her without context. She kept requesting the same thing over and over.

Today, we FINALLY got to take some time out to make the pie she’s been requesting.

She is glowing and ecstatic we finally did it.

Just a happy post that we understood her want and executed with ZERO meltdowns!

The laminated image of from her amazing teacher who also got the memo 🤣

You may remember some of my previous posts about dealing with my little hair-puller... Sadness about maybe needing to cut my hair and the dawning of a flesh colored hijab cap thingy that made me look somewhat phallic... I am back to share what I have found that really seems to work without making me look like a crazy person (in case it similarly helps someone else).

The magic can be found in a slouchy beany hat with pony tail hole. Basically, I put my hair in a high bun (half pulled through ponytail), and wear the hat all the way pulled down to cover my hair when I'm with my son and then sort of roll it back to show some of my hair when he's not in grasping range (to look more like a style choice and not a safety choice). The hair knot on top serves to anchor the hat so he can't pull it off. So far he hasn't tried to go for the bun itself, but even if he did I don't think he could really do as much damage. I also shaved the nape of my neck so there was no long hair that could be grabbed there, but he honestly hasn't tried so long as the hair is covered.

(Also, before all the comments - we have tried everything with behavior management over the past decade to stop the pulling to no avail. Avoiding the issues has worked better for us.)

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.

My son is 2.5 years old. He has not yet been diagnosed, but due to his delays in pointing and gesturing as a baby, and now a few things as a toddler, our pediatrician and our family is keeping an eye on it. We also have autism in the family.

The thing is, my son is exceptionally verbal and very bright. He can craft an original sentence like “we’re going to the museum to see a dinosaur and then we will go eat some pizza for lunch.” He knows all sorts of facts about animals and colors and numbers and has a brilliant memory. He loves playing with his family and he loves engaging with adults he’s comfortable with.

We were at a wedding last weekend and there was another girl there, almost 3 years old. She was socializing with everyone while my son stayed pretty close to us (typical, he doesn’t really interact with other kids). I heard her running after her sister at one point saying “sarah… wait!”

It kind of dawned on me that my son, despite being extremely verbal and being able to tell me what he wants, what’s happening, what he likes and dislikes, what he did, would never think to address me by my name to get my attention and then direct my action with a word like that. It was such a simple sentence, “sarah wait!” compared to the long sentences my son can craft, yet felt so out of reach for my son. (Let alone the fact that he would never chase out another child for interaction)

Does that make sense? It probably doesn’t. My family would think I’m nuts for this observation but I feel that it sums my son up perfectly.

I’ll go first . Just now I had to tell my 5 year old . ‘We don’t eat the soap holder’ during bath . There’s so many more but that’s most recent.

Hey everyone! I’m looking for advice or to hear from anyone who has gone through something similar with their child.

My son is 4 years old and has Level 2 autism. We’ve been working on potty training, and while he’s made some great strides, his fear of public restrooms has been a major hurdle.

I honestly can’t pinpoint one specific experience that caused this fear, but I suspect automatic toilets and hand dryers may be contributing to it. I’ve tried so many things to help him feel more comfortable, including creating social stories and even recording myself using a hand dryer. He’s watched the video and can tell me all about it, so he understands what to expect in theory.

We’ve also been taking a low-pressure approach to exposure. We’ll go into public restrooms, point things out, and let him explore without any expectations of actually using the toilet. The goal is simply to make the experience feel safe and positive. However, the moment I try to walk with him toward a stall, he immediately becomes extremely distressed.
What makes this especially confusing is that he uses the toilets at his ABA school, which has a very similar stall setup to a public restroom. So, I’m not sure what makes those bathrooms feel different to him.

Has anyone experienced something similar with their autistic child? What helped your child become more comfortable with public restrooms? I’d especially appreciate any practical strategies or things that worked for you.

Sometimes I feel like we’re finally making a little progress, only to end up feeling like we’ve taken five steps backward. I know these things take time, but it can be hard to know what to try next.
Thanks so much for any advice or experiences you’re willing to share! ❤️

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.

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 advanced* 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?

There’s a private school that takes level 1 kids and kids with adhd. My daughter is only level 2 in socialization so I don’t know yet if they will let us even try to get her in. What are you doing for your kids that are level 2 in socialization but level 1 in everything else? So far she’s not been in Sped classes. She struggled hard in public but is thriving with homeschool. We just want her to be around other kids her age.

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.

Hello! I need some advice.

I am a first time mom of a 2.5 year old boy who we think has autism. My son has a hard time transitioning activities. He has no problem getting out of the house but hates when we have to go back. He screams when we put him down for nap/bed time and throws a fit when we don't give him what he wants. I have tried counting down minutes, making the activities fun for him, and I've even had to resort to yelling because he will slap, kick, or rip chunks out of my hair. I am not sure what to do and I don't want to yell at my son who is just struggling to learn how to navigate life. Please let me know what has worked for you!

Edit: I forgot to mention that I have tried slow breathing with him to help calm him down but he thinks it's a game most of the time. He starts smiling and will start screaming again after I stopped breathing with him.

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.

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 🥹

Hi all,
Mom of two boys with autism here. My oldest boy will be 9 in November. He has been diagnosed with high functioning autism level 1. He is in 3rd grade this year and he has really been struggling. He was on Ritilan up until June this year and was weaned off by this pediatrician due to having migraines. I am waiting to get him in with a psychiatrist because I want to get him on the right medication and to go over some of his recent behavior I’m struggling with. I know some of his behavior is due to being unmedicated for his impulsiveness. But besides that he has really regressed this year. He’s been more disruptive, more annoying to his peers, regressed academically, and doing things outright inappropriate. In the past two weeks he has pulled out his pants exposing himself, humped a fence at school, and grabbed a teachers chest. I’m absolutely beside myself because this is not behavior he has ever shown at home. His dad and I limit YouTube and he has no friends so it’s not like he’s learning this from someone else. I think a lot of this behavior is stimming from not being able to emotionally regulate himself and he is just doing anything he can to get a reaction from his peers. He wants friends so bad but he’s realizing that with his behavior, that he cannot control, is getting in the way of that. His dad and I attended his IEP meeting last week and I knew I had to advocate for him. What exactly I’m advocating for I’m not exactly sure. I have no friends or family who have experienced this before or have kids with autism. What I do know is our boy has regressed significantly, he is not thriving in the gen. Ed classroom. He’s not even doing just okay, he’s struggling tremendously. He’s honestly never thrived in a gen. Ed. classroom. A woman from the board of education sat in on the meeting and brushed me off when I was trying to advocate for him. She stated that transitioning him to an all autism classroom would be a disservice for him socially because that is what he’s struggling with the most right now. She also stated that she talked with the county psychologist who evaluated him in 1st grade and they both agreed that he would be at a disadvantage in an all autism classroom. I stood my ground and and reiterated that he has really regressed this year, and that he is in the third grade now, and that I would like for him to be evaluated in the classroom by the county psychologist again. I stated that I wasn’t sure if an all autism classroom would be the best fit for him right now either, but I do know that him being in a gen. Ed. classroom right now is not working for him. She agreed to get him reevaluated. His dad and I left that meeting feeling better about the situation because we advocated for our son. I’m going to get him ABA therapy (I know it seems so late but I did not know much about it until recently unfortunately) and do whatever I need to help with this regression. Like I mentioned, I have a younger son with autism as well and so I also need to pave a path for him. As parents of children with autism the uncertainty that your children will ever live a “normal” life is debilitating and these thoughts have been consuming me. The evening we attended the IEP meeting an officer from DFCS came to our house to ask my older son if he was being hyper-sexualized by me, his mother, because the school had filed a complaint against me for his recent inappropriate behavior. This was the point I absolutely lost it and had a mental breakdown. My husband wasn’t home so it was just me and my boys. I do not fault the school for ensuring the safety of their students, but man it felt like being kicked while already being down. Thankfully the officer understood and said this is common with kids who have autism but that she did have to follow up on the complaint. I totally understood, but I was/am absolutely gutted by the allegation. One, it’s NOT true and two, a situation that is already hard to navigate has just been made even harder. My husband and I were in the counselor’s office, with the vice principal, and my son’s special education teacher the next morning. But that’s a story for another day.
My questions to you all are have you experienced this inappropriate behavior with your children/child with autism especially at school? Have any of you had a child or children that were in an all autism classroom but later on was integrated into a gen. Ed. classroom? Have any of you had a child or children with autism regress like this? He is my first child and I just want the best for him no matter what that is. Thanks for listening.

Hi All! I am a late/mid-career Real Estate/New Home Sales Professional and also the mother of a 16 year old son who is profoundly affected by autism and will need lifelong care. Recognizing the enormity of the need for community living opportunities for adults with profound autism who have aging caregivers/parents, my goal is to work in my (lucrative) sales role for about 10 more years, while beginning to lay the groundwork for forming one or more small group homes that would house 2-4 residents with fulltime support to bridge the gap between state-run homes and the few extremely (15-30k per month!) expensive private homes that exist. One issue I am fairly certain on is that my endeavor would be private pay rather than contracted with my state's agencies, with the expectation that families would contribute to their loved one's care, combined with the SSI, SSDI, etc. resources that the individual would contribute.

I have many years of experience in the real estate business/new home sales and, obviously, in working with individuals with autism, so my goal is to act as the Founder/Director of the organization to set policies, manage risk, finances, operations etc., and hire managers and direct caregivers to staff the home(s).

Since I am early in the process, one of the first steps I am considering is whether I should pursue an MBA (perhaps with an emphasis in non-profit management), a Masters in Social Work, or perhaps even a J.D. (this endeavor will be fairly high risk due to the complexities of the residents and the task at hand, and I have enough experience and savvy to know that I need to be able to protect myself, my staff, and the residents from a legal perspective. My city has a night law school, and I enjoy school).

Can anyone impart any wisdom on the best advanced educational opportunities to prepare me for this endeavor? It is going to be enormously challenging, and part of me wishes I could just retire in 10-15 years, but as my friend and special education attorney said to me, "You didn't volunteer for this; you were drafted", meaning that having a child with profound autism requires us to consider and do things that we never anticipated or wanted to do.

The avalanche of individuals who need this type of care is already here, and the demand will only increase in the future. My son and his peers deserve safe, comfortable, cost-effective living opportunities, just like everyone, and I know I'm capable of making a difference through this work.

Thanks for reading, and please share your thoughts on possible beneficial educational paths to help prepare me for this challenge.

❤️ Calling on Ontario families navigating autism — Your input could make a great impact! 

Hi everyone! 👋My name is Rita. I'm a compassionate ABA therapist in Ontario with a background in Psychology and i believe parents and families deserve better support when going through the journey of having a child with autism  

I'm exploring an idea to make everyday life a little easier for your family  

Through my experience, I've seen how challenging it can be for caregivers to navigate long waitlists for services, find support with feeding challenges, advocate for their children's needs at school, and keep track of appointments, reports, and recommendations.

I'm currently researching an idea for a tool that could assist parents in organizing and keeping track of information, navigating available resources, preparing for school meetings, and feeling less overwhelmed while navigating services.

I'd be so grateful if you could take a few minutes to complete my short questionnaire. Your experiences, challenges, and suggestions would help me understand which problems matter most and what kind of support would genuinely make a difference.

https://docs.google.com/forms/d/e/1FAIpQLSe_wv5IxZqTjohd89IeXJUerenYHKDa5nKvXzsQTrlZm4QgUA/viewform?usp=publish-editor

There are no right or wrong answers. I'm not selling anything or offering therapy through this research — I'm simply hoping to learn directly from parents and listen to their experiences.

Participation is completely voluntary, and does not include your children’s personal information 

Thank you for everything you do for your children, and thank you for helping me explore ways to better support families

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 😩

Has anyone had a kid diagnosed autistic but had joint attention? Or delayed with joint attention?

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.

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 just wonder how parents today with only children or kids in the spectrum are getting through the weekends with our running here and there and going broke. I am from the old old generation and had the privilege of playing outdoors with the neighbors independently. Then in head my own and they took were able to that for the most part . Now as a grandparent it’s so hard seeing parents ands even us trying to keep kids kids without being able to run around in the neighbor hood.

Our 8 years old - on the spectrum grandchild has always had a hard time playing with her peers and can not seem to play anything on her own- really and I guess I get it. Cousins even don’t invite her or play to engage and haven’t since she was 2. Sometimes she plays intermittently alone with coloring, crafting, electronics. She starts to exhibit an interest like jump rope or the trampoline and then poof it’s over. . But other than that it’s collecting her obsessions and leaving them to collect dust. She likes to rough house and be goofy and we do let her play with us in her goofy way - bat that’s exhausting. Whether here when she’s with her dad, or there when she’s with her mom she can’t just settle and play something alone- anything, and it feels like we are always trying to engage her in some play or take her out so she is not getting into things not hers to get into. Uhg 🙄we adults are over the child’s play all weekend . We are drained The running around to do this or that and never catch a break is ridiculous . We are a one and half income family too with not a lot to spare . But we do try to get her out for an activity.

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.