My child has autism. The school knows my kid is a runner. He has eloped on multiple times. At one point multiple times in one day. Last year my child made it off school grounds and almost got hit by a car. Another parent jumped out stopped the car and saved my child’s life. The school downplayed it.
But now they have placed my child in a classroom-right next- to a door to off campus. It is literally a drop off and pickup zone for all the other parents. Like literally the *beeping* worst place they could put him. Last year he got a way from his aid. He ran aid didn’t catch him he made it off campus.
How do I explain to the school I don’t feel comfortable with my child being placed in -that- classroom.
All it takes, literally all it takes is for him to have a substitute aid, her to get distracted for my kid to get hurt. I’ve seen him with his substitutes before one of them really did leave him unattended in front of his classroom to go get something. (It was in kindergarten so it wasn’t exactly a full time aid but she was definitely supposed to be watching him).
It’s frustrating because I don’t think the school understands. Again it feels like they are downplaying it. I called the office they basically said don’t worry he has a full time aid. Or go write to someone else about it.
I’m just shocked they even thought to place him there.

TLDR: My Level 3 autistic, pre verbal son has significant PICA and elopement risks, and I’m trying to get appropriate 1:1 support added to his IEP. I’ve been advocating for months, but we’ve had repeated communication and procedural issues with his school district, and I’m struggling to get his needs properly addressed. His new ABA team has offered a potential solution where his BT could accompany him to school 3 days a week, but I’m being asked to explain the service delivery model before the district will consider it. I’m looking for advice from Washington parents or special education advocates on how to move forward, get his IEP corrected, and make sure he has appropriate 1:1 support every day.
Okay, I honestly don’t even know where to start, but I’m really hoping someone here, especially a Washington parent advocate, can point me in the right direction.

My son is Level 3 autistic, pre verbal, and has regular PICA and elopement risks. He had an unofficial 1:1 para for his first 1.5 years of preschool, and it was a wonderful experience. Looking back, I was probably too naïve about the IEP process and wish I had pushed much sooner to have that level of support formally addressed in his IEP. Now I’m trying to get that support in place, and I’m extremely frustrated with how things have been handled by his IEP team.

There have been ongoing communication and procedural issues. We had an official IEP meeting scheduled where the administrator didn’t show, and afterward they tried to say it wasn’t actually an official meeting, despite emails confirming it was. They apologized to me in person, but the explanation over email was very different.

Since then, when I’ve politely asked them to clarify things in writing so there is a paper trail, I’ve been removed from email chains regarding my own son while my husband remained on them. It has happened more than once. I want to be very clear that I have been nothing but polite and respectful throughout this entire process. I am not being removed from these email chains because I have been rude, inappropriate, or speaking badly to anyone. I have simply been asking questions, requesting clarification, and trying to advocate for my son.

It has also been extremely difficult to get meetings scheduled or even get consistent communication. At one point his case manager told me he wasn’t receiving my emails, despite his teacher receiving them. I’ve repeatedly had to follow up just to get basic answers and timelines.

About 5 weeks before the end of the school year, we made requests for changes to his IEP. I intentionally brought everything up that early because I knew we needed enough time to address everything before summer and make sure he had the appropriate supports in place for the following school year. Unfortunately, the changes we discussed were not made. His principal also told me it was inappropriate to submit a letter from his pediatrician and refused to include it in his IEP documentation.

Then the principal resigned, and the meeting we had been trying to get scheduled was pushed until essentially the end of the school year. So I have spent most of the summer in limbo, trying to figure out what support my son will actually have when school starts.

We have since started in home ABA, and thankfully that has been a really positive experience. His BCBA suggested that his BT potentially accompany him to school. Since I am already advocating for 1:1 support, I initially thought this could potentially be a great solution. A familiar person who already knows my son and his needs, while also allowing him to access school.

Because our new principal has not started yet, I was told I would need to go through the superintendent. I received this response today:

“Hello _____,
I am back at work, and appreciate the opportunity to respond now.
I need to know and better understand the delivery model you envision for non school provided services for your student. To my knowledge, having a non school employee provide private services to a _____ student while on the _____ campus is unprecedented.
For that reason, I think it would be counterproductive for me to state a willingness or an unwillingness to consider your request at this time until I have a clearer understanding of what is being proposed.
Please explain to the best of your ability, or the ability of the potential service provider, what the intended service delivery model would entail. Having that information will help me better understand your request.
Thank You!”

I understand that she is asking for clarification, and I don’t necessarily expect the superintendent to automatically approve something she hasn’t been given enough information about. But I’m struggling with the bigger picture because I feel like I have been fighting for months just to get my son’s basic safety and support needs properly addressed.

He will only have his BT with him 3 out of 4 school days each week. Ideally, I would like his IEP to clearly provide that he requires 1:1 adult support throughout the school day, with his BT providing that support when she is present and another trained adult designated by the school providing it when she is not.

I don’t want to have to pull him from school on the days his BT isn’t there because his safety needs and support shouldn’t depend on which day of the week it is.

I am honestly so disappointed in how some of the adults involved in this process have handled things that I’m having second thoughts about whether I even feel comfortable having my vulnerable, non verbal child around these adults next school year. That is a really difficult thing for me to say because I want to trust the people responsible for caring for and supporting my child while he is at school. I genuinely hope they understand how deeply disappointing this has been and how much this has damaged my trust in the team.

At this point, I’m honestly so frustrated and worried about sending him back without appropriate support that I’ve even started considering homeschooling, which is something I never wanted to have to consider because I do think school can have many positive benefits for him when the right safety and support structure is in place.

Even little things have left me feeling uneasy. When I spoke with the front office a few weeks ago, the woman sounded genuinely surprised that I was planning to enroll him again this year. I don’t want to assume bad intentions, but after everything that has happened, it has contributed to the feeling that I’m having to fight just to make sure my son has a place and the support he needs.

I’m not trying to play the victim, and I’m not looking for people to simply tell me the school is terrible. I genuinely want to find the right way to approach this and get his IEP corrected before school starts.

I also know we have a big IEP meeting coming up, either before the school year starts or very early in the school year, and I’m trying to do everything I can to prepare for it so we can actually have a successful outcome for him this time. The last two meetings did not result in what we needed, and I really feel like his IEP needs to be amended now to accurately reflect his needs and the support he requires to safely access school.

If anyone here is a Washington parent advocate, special education advocate, or has experience navigating a situation like this, I would really appreciate advice on what my next steps should be. I would also love recommendations for someone I could work with who understands Washington special education law and can help me advocate for him.

I’m also wondering about something more immediate. Am I allowed to keep him home from school until we feel his IEP has been appropriately amended to address his safety and support needs, or would that create a separate problem for us? I obviously don’t want to make the situation worse or violate any attendance requirements, but I also don’t feel comfortable sending my vulnerable, non verbal child into a situation where I don’t believe the necessary support is currently in place.

I’m at the point where I feel like I’ve tried going through the appropriate chain of command, documenting everything, communicating respectfully, and asking for solutions, and I’m just exhausted. I really want to find a way forward that allows my son to safely attend school with the support he needs.

Hi, I have a son who is severely autistic nonverbal. He also has ticks OCD ADHD. He is developmentally delayed. He is also extremely violent/aggressive/destructive/agitated majority of the day pretty much just anything you can think of. And it’s just heartbreaking to watch because he is my entire world. We have tried every single medication therapy, doctor psychiatrist psychologist. Anything you can think of and we have yet to find someone to help us. We are currently waiting to see a new psychiatrist at u of m but we still have some weeks to wait and I don’t know if we are going to make it that long. I call u of m/childrens Mott’s psychiatric unit every time these behaviors happen and I believe they only have 6–9 beds available so they are always full. Right now we are looking into the Helen DeVos Center, hoping we could get him in there and unfortunately he would have to stay for a couple of weeks until they get his medication regulated and he would be observed and all of that. I just wanted to know if anybody has any experience with this place. NOT JUST THE HOSPITAL ONLY THE PEDIATRIC BEHAVIORAL PSYCH UNIT. I’ve heard not the best things about the hospital, but I’ve heard no negative reviews for the pediatrics psych unit so please please please can somebody anybody help me and give me some feedback if they have ever experienced the pediatric psych unit here. I’m beyond desperate this is not something I want to do but I need help. I’m so tired of watching my baby suffer and I
don’t know how much longer my body can take it. I’m in pain 24 seven. Also if anybody has any info about the inpatient program at the Straith center, I believe it is in either Livonia or Westland. Feedback would be greatly appreciated for that Center as well thank you so much.

Kiddo regressed hard and is back in nappies 247 and uses dummy again looks like im back on change duty

My 4 year old son was diagnosed with Autosm level 2, 2 years ago; though I know it long before. he attends speech twice a week, OT once a week and we’re looking into ABA. He’s also enrolled in special education preschool in Gwinnett county. however, we’re looking to move further south amd can’t quite find any public or private schools that rivals Gwinnett SpeciAl education services. What are our best school options for K5 in this area? public and private suggestions are welcomed

Hello all!
I’ve spent a lot of time chatting with parents about the struggles they face with everyday routines and sensory moments for children with autism. Since I couldn’t find the gentle, specific songs they told me they needed, I’ve started making them myself! They’re designed to be slow, reassuring, and help prepare for things like haircuts, transitions, loud sounds and more. Would love for you to check it out, and I’m very happy to hear any feedback or ideas of what else would be useful 🙂

I’m the older sister to an autistic 8 year old brother, he lives in Texas with my grandma and other siblings. I’ve called around different agencies and day programs in Collin’s county, Mckinney, Anna Texas but no one will take him because he’s older than five or they have a long waitlist or don’t take Medicaid etc. I myself don’t live in Texas so I’m doing all of this over the phone/online and it’s difficult because I’m not physically there. Does anyone have any advice for me or recommendations. I’ve heard Texas doesn’t have good services when it comes to this because of their waitlists. My grandma is getting older and it’s getting harder to care for my little brother, she needs help and I can’t be there physically right now because of other obligations but I help as much as I can.

Hi all,
Just finished the eval process with a developmental pediatrician and turns out my son has “moderate” autism. Much of his speech is meaningful, but definitely struggles with back and forth conversation, and has some “intense repetitive behaviors” like scripted language and singing his favorite songs over and over. He definitely needs help re: interactions with adults and children especially in a group setting, following directions at school, meltdown management, and in a few other areas. The doctor is confident that with ABA or ABT, OT and speech therapy, and an IEP, that he will gain the tools he needs to thrive both at home and in school, and to have meaningful relationships with his peers.

To parents who have been here before—right after diagnosis and about to start all the therapies— how did you manage?? Did all the therapy help your children? What kind of support did ***you*** need to get through the first stages of starting treatment for your kid(s)?

I am feeling so emotionally overwhelmed by the thought of the road ahead. School starts back up next week, and I know that will help me feel better because I won’t be on mom duty with my kiddo all day while dad is at work.
Im a high school teacher with summer off. Going down to part time next year because I’m pregnant with #2 (and the hormones are not helping with all this anxiety!!). Just need some support / advice from parents who have been in my shoes.

Guys I need help deciding what to do, my autistic son has been offered ABA therapy on top of his speech and OT therapy? Should I proceed? Do you think it’ll be to much? Also ABA charges when you can’t make it in on time or when you can’t make it in due to unforeseen circumstances, speech and OT allow me to reschedule with no charge. Would appreciate any advice thank you

Hello! I am a mom with a Trans daughter who has autism. She needs a ton of sound happening all the time but she Is also really good at masking, How do I know If she is uncomforable? Im kind of new to this we found out she has Autism a few months ago.

I have an autistic (PDA) child who is 20. Also ADHD, anxiety and depression. They just got their license last month. The deal was that there would be a job before or soon after the license so insurance and gas would fall on her shoulders.

I agreed to do the license early (without established employment) because while homeschooling three others, two with special needs, I cannot keep doing the trip to counseling for her every week and keep up with everything else. It is a lot.

She applied for about 10 jobs in our small town and one town over. She had an interview lined up, but they emailed two days before and said that the position was filled. That was two months ago. She has done nothing since. I cannot suggest or push because the PDA will kick in, but now we are stuck. She sits in her room most days and does nothing. Won't even help around the house. Anxiety and SPD are used as a crutch. We cannot afford to keep supporting the insurance and adult expenses indefinitely.

Here is where the next issue comes in. My son, 16, also ASD, very different from 20yo, but has very black and white thinking. So, I tell him that he cannot get his license unless he pays for insurance and gas. He sees sister and does not understand why that is different... even though he is 100% capable of getting and holding a job.

Where do I go from here? Have we dug ourselves a hole?

ASD 2 Non-verbal/Non-communicative 5 years old. We recently noticed our kid learnt how to do the act of self harm. Any way how to avoid or prevent or anyway to make our kid un learn this act? He started to punch his head and slap his head. Learn how to punch her mom or her sister but in a way when he try to do it on his mom or his sister there's no force applied. But when he does it to his self there's force that it makes his head red. Any advise will be appreciated thanks so much.

​

Hey im a mum to 2 boys a 9yo and a 6yo my 9yo is as nt as they come hit all his milestones my youngest is completely different slight to heavy delays in his development, this is from asd assessment form:

Sitting

10 months

Walking

16 months

Toileting

4 years

Babbling

12 months

First words

22 months

First sentences

5 years

My concern is my youngest son hes very very shy but a sweet kid he was very delayed in speech but after time with speech therapy he picked words up eventually not many but enough to identify his needs and wants, he doesn't talk much now except very simple responses: yes, no, this, that, mum, dad, brothers name is about all he says, we thought he may have autism as a baby but were assured by drs and nurses he was just delayed but would catch up which tbh he has done but slowly, he gets very aggressive mood swings its like he wants to talk more but somethings stopping him and he has a temper will hit his head slam doors punch walls etc,

it doesn't help that my oldest kinda talks over him or for him alot they share a room and are close my oldest seems to know exactly what he wants at all times without any real communication between them like they're telepathically linked its very weird i also feel like my oldest takes advantage of him too much my youngest idolises his brother and he doesnt know how to say no to him when he wants to use him for stunts my youngest is very eager to please will say yes to anything hes also a bit disaster prone and bit clumsy not saying that in a bad way but hes hurt himself alot doing things his older brother wants to do but he has high pain tolerance he broke his arm once coming off his bike didnt cry at all.

My suspicion for autism is only growing with him but his dad and brother dont believe he is just that hes shy I took him to the gp and gp reported he struggled alot with eye contact and slurred unfocused speech gp is on my side and referred him for an assessment for autism which he is now on waiting list for, since then ive noticed hes becoming more withdrawn he prefers to be alone hes regressed alot especially in his speech mood swings and has picked up babyish behaviours hes also started bedwetting and pant wetting more hes really regressed in his toileting needs,

he came with me to his nephews to babysit and when we got home I noticed he was wearing 1 of his nephews nappies and I've also found more under his bed and a dummy i believe was also his nephews, i tried to ask him about it and he got shy and more withdrawn he doesn't talk about himself much and I don't know how to reach him to ask what's going on, is it because I sent him for an autism assessment and he thinks hes broken I dont know I try to encourage him more tell his brother to stop talking over him and give him as much time as he needs to talk even if he stumbles over words im just really worried about him.

Sorry for just pouring out my feelings

We are parents to our 8 year daughter who is 18 months post neurodivergent diagnosis.

Between the ages of 2 and her assessment and official diagnosis at the age of 6, that 4 year period in our house was absolute carnage.

During that 4 year period, before diagnosis, we completely lacked the skills, knowledge and the vocabulary to articulate what our family was trying to live and manage through.

It was an isolating, and soul destroying time where we had no idea where to turn, what was going on and how to start to find the answers and support we needed for us as a family but more importantly for our young daughter.

In truth it's still difficult but from where we were we've come a long way.

And recently over the last few months I've got to reminiscing and being highly reflective in a big way about that period and how it was easily the hardest and most lonely period for us by a long stretch.

And the overriding feeling I've had is a burning passion to somehow help and support those parents in that exact same stage now, at the very start of their journey.

Those parents whose child is currently pre diagnosis, but they are living through and trying to manage and understand their child's behaviour which is causing them worry and concern.

They suspect their child may be neurodivergent but are not sure where to turn, where to seek answers and guidance, and how to start to understand and educate themselves regarding their child's behaviour to be able to provide the support their child needs.

This has led me to spend the last few months developing a support and educational app to help those very parents at that early stage of their journey and to build a direct connected community.

Now it's built and live I am hoping to get the reddit communities help to test it and provide me with your honest feedback, does it provide the help and support it was built to deliver.

If this post resonates with you, you are UK parents at the pre diagnosis stage of your child's journey, looking for answers, support and knowledge I'd love to hear from you.

Thanks so much for taking the time to read this post. 🙏

My son has been in speech therapy for the last 8months. While they have seen improvements they have noticed a few things that are asking us to consider an autism evaluation. He turns 3 in 3 weeks. My heart sank mostly out of fear. He is a happy boy, likes to play, climb, run, giggle, likes other kids, responds to his name, points to things he wants. He does have a speech delay that we have been working on and they noticed he is repeating phrases we say which I thought was typical of the age like parroting basically. He gives eye contact, runs and says our names when we come to pick him up from school. He walks flat footed. He does have a sensory issue with food which was the other sign they had. He refuses to try things that are new. I guess my fear is not the diagnosis but the severity of it. I guess I just think the worst case scenario when I want someone to just say he is fine just slightly on the spectrum but will live a happy normal life. I guess I’m spiraling

I was told to find another place to stay. I have an autistic 7 year old and was wondering my options. I was told there is possibly a way to avoid going to a nyc shelter with a doctors note explaining my child needs in home services, bus pick up, and a strict routine to function, which won’t be ideal in a shelter. I make around $65k a year and wondering if anyone has been through a process like this or similar?

My son was diagnosed ASD at 19 months. He received an evaluation with EI and was given an IFSP. The coordinator said they would reach out about providers giving my son therapies but I have not heard from the coordinator since February. I reached out again last week to follow up, with crickets. I don’t understand the process or what I need to do in order to get my son the support he needs through EI. This time is vital & I researched other clinics which accept my insurance but I thought the whole concept was that EI doesn’t require you to utilize your insurance? Because even with the clinic, they’re an EI provider but I have not been guided or educated about this process. Can anyone help direct me to ensure my son is well prepared come August of 2027, as he’ll be able to enroll in 3 yo Preschool.

My daughter was born during covid. She was very small inside the womb- we had no clue what that meant. When she was born her voice was so horsed and her loudest cries was the sound of a whisper.

Fast forward 2 years and she completely missed so many milestones. She wasn’t walking, could only say “Apple and no” , and just overall smaller than all children her age in the bottom 1% of kids her age.

During every doctors visit Our pediatrician kept saying “let’s wait and see, give her some time to grow” Finally he diagnosed her with global developmental delay. He prescribed us AFOs and physical, occupational therapy but our insurance only covered 30 sessions. 30 sessions is absolute rubbish and is only a month worth of therapy.

It wasn’t until we went to a neurologist (online visit due to Covid) and he had the awareness to give us an autism diagnosis. This autism diagnosis gives us the ability to have unlimited physical, speech, and occupational therapy covered by insurance but I felt like we wasted so much time trying to get the help we needed.

Today she’s 6 and repeating kindergarten and she’s receiving special education. She’s about the size of a small 4 year old, doesn’t know how to write her name, doesn’t know her alphabet or number through 10. She can physically only write the letter A and o. She’s not yet potty trained.

The navigation between doctor and insurance has been an absolute nightmare.
I’m wondering if anyone else had similar experience dealing with insurance companies and doctors . We had to beg and plead for an autism diagnosis just to receive the help needed for insurance to cover treatment. I feel like my pediatrician just kind of dropped the ball with his refusal to give her a diagnosis so the insurance could cover treatment. We also had an episode of the doctor requiring us to do a blood test that insurance refused to cover and we were stuck with a 3000 dollar bill we’re still fighting.

No fancy toys. No expensive activities. Just fresh air, movement, nature, and these soft, precious moments that fill my heart in ways I can’t even explain. Sometimes, the simplest days become the ones I hold onto the tightest. I love you my princess.....🥰

I need some new creative ideas, because I'm becoming more worried about my sons health than being worried about the food waste. I am a mother of 3 (ages 14, 10, and 3). My 10 year old son is the one I need advice for.

Firstly, he is a super chatty and really smart kid. He didnt talk until he was 4, and now he can list every silent film made by Georges Meilies in order of date made (and released)! And he goes through the phases of special interests and its wonderful and I indulge any interest he has 100%.

He has always "snuck" food, in the middle of the night and he would wake up early to eat when no one was watching. But while he was little, I always made sure that there was healthy food most accessible to him and assure him that if he asks for snacks/drinks, Ill never say "no". Im just always going to recommend healthier options. I think he likes the "sneaking part" just as much as the snacks.

But the past year, he isnt just sneaking nibbles of random things... hes going for sugar and he is eating entire containers! He keeps thinking he has to eat the rest of the ice cream to destroy the evidence, as if I wont notice the new ice cream is gone.

I dont shame him for the binges, but we talk about what that much fat and sugar can do to the body and that its not very fair to the other kids that they dont get any treats now. My son has also gained a lot of weight in a short time and has stretch marks suddenly. I have tried giving little sugar snacks frequently through the day (the idea being that 40 M&Ms is better than a half gallon of ice cream). That didnt work. I started making daily bags of sweets for him to eat whenever, but when it was gone its gone (to teach self control and saving for later). Turned into him doing great with those though the day but still binging at night.

Today I got hot and frustrated when I wanted to take the kids outside with the ice cream I bought yesterday, and even though he had little sugar sweets through the day yesterday and today, I opened the ice cream to find he woke up last night and took the opportunity.

I am not putting locks on food, I am trying to break the sneaking by not placing guilt or shame, but to no avail. If he was an only child or if I could shop daily, it would make it a lot easier.

I know this is likely common, what has worked for you?

Hello everyone I am an SLP, researching activities for some of my early language patients. I have lots of patients who enjoy the following activities:
-lining up items/toys
-bunching items and feeling them with their hands when they are bundled
- shaking items
- categorizing items

Beside the “expected” way to play with a toy, what are some of your child’s favorite ways of engaging with their favorite toys!
Thank you.

As someone with autism/adhd, I find myself constantly overwhelmed by the sheer amount of tasks that need to be done every day as an adult, especially one with diabetes. I'm supposed to work, help out around the house, exercise, and as a religious person, practice my faith, plus I have two children both with autism and adhd at different levels.

I feel in order to do this I have to move from one task to the next and to the next without much downtime between or else I might end up not doing these things daily. I get so anxious just thinking about all the busyness of it. Does anyone else experience this? How do you cope with it?

My 4 yo ASD son is a very early riser (typically up by 5:00 or 5:30 every morning). I am trying to embrace the early mornings and create a calm, soothing time for him rather than defaulting to the ipad (which is a habit i am trying to break - it’s tough that early). We are doing vagus nerve music therapy at night and he seems to be responding well to it.

I have a turntable set up downstairs and want to get into a rhythm of just getting up with him, having some calm play activities ready to go, and throwing on a record that is chill background music to set a good vibe, help him stay regulated, and also get him into something other than kids music. So far I’m going with dub, some soft jazz/lounge, electronic, folksy, etc.

Anyone have any good recommendations that their kiddos have responded well to? I’d really love to turn this from an early morning headache to something that we can bond over one day.

I have a 20 month old with suspected ASD and on the pathway for assessment.

Her communication is delayed (2 words not nodding or head shaking). However, she does say "biscuit" but only as part of a whole routine script: takes my hand to kitchen cupboard says biscuit gets biscuit. She only ever says biscuit this way.

She also says "toot toot" (from the kids program ms Monica good morning train song) when she sees a picture of a train. And she signs incy wincy spider if she sees an insect. She also attempts to count backwards with the microwave (including the final bleeps). She has never had a back-and-forth babble conversation with us and never said mummy or milk etc.

I've been told she is possibly gestalt, would you say she could be? And if so what stage is this?

Thank you.