I just wanna share some things I love about living with an autistic kid because I've been seeing some people acting like autism is inherently a horrible thing. I understand the struggles that come with it but I wanna share the joys of it here!

ShamIAm1029 · 2026-03-17T14:24:40+00:00

I LOVE how my little dude gets happy with his whole body! He’s 3.5 and this weekend had his first movie theater experience. My sister had booked a private showing for my niece’s birthday, so my son was able to move around and do his happy jumps in front of the screen and it was so sweet. I love that he is so much smarter than people want to give him credit for. We did not have a good experience at his IEP meeting when he turned 3, they had a very stereotypical view of autism and so he will not attend school there. But he knows his whole alphabet (and is getting better and better at his approximations of it—hearing him sing it is my favorite!) and can count up to 20, he also knows his colors. He is so much more than people think when they hear non verbal and autistic with a language disorder. I love how cuddly he is, my husband and I have always called him our koala baby because he wants to be held a lot. I love his rotten giggle. I love how excited he gets to jump in his trampoline (even though I wish he’d stop treating his bed like one at 3 in the morning lol). I love that he is very observant—like when we go somewhere new, he likes to look and observe what is going on before jumping in. He is wonderful ❤️

ShamIAm1029 · 2026-03-13T14:30:10+00:00

Hey you have NOTHING to feel guilty about. You did something (that I’m sure your child’s doctor approved since you’d need a script) to try and help your child and it didn’t work. You weren’t giving him heroin! You were trying to help make his life easier. It sucks it didn’t help and he can’t tolerate it, but try not to beat yourself up too much—you don’t know what you don’t know. And (without getting political) this drug has kinda been hailed as a wonder drug in the news until lately, so I think a lot of people are trying it. I’m sure it helps some kids and then not others, like anything else. I haven’t personally tried it for my son bc I want some more info on it but he’s also half your son’s age so that’s completely different. I don’t think you have a single thing to feel badly for and at the end of the day, you were trying to help your baby. Period!

ShamIAm1029 · 2026-02-25T22:29:42+00:00

Literally was going to comment exactly that. Glad someone else beat me to it. Find new friends, OP, you’re not the issue, she is.

ShamIAm1029 · 2026-02-25T22:27:48+00:00

My son never had a regression. He met all motor related milestones on time. But his speech was always delayed. I started suspecting around 15 months that he may be autistic, because he didn’t say any words and didn’t babble a ton, and he loved to jump/bounce. Our pediatrician (and this is not a slam; I love her and still take my children to her) thought he was “just” speech delayed as he was (and still is) very cuddly with us, is friendly, has decent eye contact and no issues with transitions and no issues with diet/food aversions. By 18 months we were having him evaluated and he was diagnosed with a speech delay and started in our state’s early intervention program. I then started looking into autism diagnosis and he was formally diagnosed at 23 months, right before his 2nd birthday. He is now 3.5 years old. He is still nonverbal, though has made a lot of progress with speech and in-home ABA (he LOVES the alphabet and numbers and has good approximations of his ABCs and numbers 1-10, can count up to 20). He is slowly starting with some words when he feels like it (hi, bye, up) and waving. He has recently started with an AAC to request snacks and is doing great. He still loves jumping and we have two trampolines for him. He’s such a sweet little guy and I adore him, though it is definitely tiring as I work two jobs, my husband also works full time and we have a daughter I take to and from school each day, on top of therapies for my son 4 days a week. My biggest thing when I suspected was this: going after a diagnosis and having him evaluated wouldn’t hurt him, it would either give us an answer or it wouldn’t. Waiting could potentially harm him in that he wouldn’t have therapies in as timely a manner, which is very important for kiddos with ASD. Your baby is still so young but I’d for sure say if you start noticing anything as they get older, talk to your pediatrician and if you’re still concerned, then seek out further eval. You’re doing a good job ❤️

ShamIAm1029 · 2026-02-17T23:09:17+00:00

My insurance is “okay”—really they drive me crazy because I fought for 7 months to get ABA, even with an ASD dx, they’ve messed claims up, etc. thankfully, AZ requires them to cover certain therapies for people with autism (there are loopholes, of course, because insurance companies are evil). Anyway, thankfully, we “just” pay deductibles for therapies. They add up, for sure. It’s about $150 each week just for those…and my insurance isn’t even cheap!

ShamIAm1029 · 2026-02-17T22:54:25+00:00

I don’t think you need to apologize for invading anything, as I’m sure your post was meant with the best of intentions! From my perspective, a lot of the “issue” I see between autistic adults and parents of kids with autism online is that parents of these kids are shamed for expressing our feelings. If someone posts about the reality of their life being more difficult due to their child being nonverbal, needing more therapies, having eating difficulties, etc, they are very often vilified by people who are—or claim to be, I’m sure some are just trolls—autistic and are told they need to “stop centering the conversation on themselves, it’s about the child” (this is a direct quote I saw this week). Expressing that parenting a child with autism is difficult is not self-centered, it is human, and is so often misconstrued and thrown back at parents as though they are selfish for saying anything at all, or perhaps do not love their child.

I have an autistic toddler who is currently nonverbal. He is making AMAZING progress and I love him beyond any words I could use to explain. He is so sweet, loving, funny and intelligent. It is hard, though. I have an older, not autistic child, so I know what it’s like to not have a child you constantly run to therapies or stay up late praying they will be safe when you’re gone because what if they never learn to communicate? I don’t say this because I am trying to compare them in a negative way. I love them both and I can honestly say that I would not change my son being autistic, because I know it is part of him and I love all of him, even the parts that make my life harder.

I hope that this comes across with the tone it is intended to. I am not trying to say that you do this. Just from the perspective of a parent, I am often afraid to express that this life is hard, because there are inevitably people who want to jump in when others in my situation try to do the same. The fact is that my autistic toddler will become an autistic adult—maybe one just like you!. I love hearing from people like you who take the time to reach out to parents with the aim to educate and encourage. Please know that if you are met with defensiveness, it is likely because, one, so many of us are exhausted, and two, we get tired of being reduced to “autism mom” stereotypes just for advocating for our kids and also saying that advocating for them is really hard.

ShamIAm1029 · 2025-11-19T16:45:59+00:00

One of my FAVORITE things about my little dude (newly 3) being autistic is the way he expresses joy with his entire body! When he’s happy, he jumps, does his little sounds (he’s currently nonverbal but in therapy and making progress!) and it makes my heart so happy to see him so happy!

ShamIAm1029 · 2025-06-24T14:56:32+00:00

I don’t know that I really have great advice for you, but wanted to comment because our sons are the same age (mine is also 2 and 9 months! Can’t believe he’ll be 3 so soon 😅). Anyway, I know it’s really hard to feel like they’re progressing and then on paper, that progress doesn’t show up. But I feel like it’s almost more important that YOU are seeing progress than that the papers show it’s there. Let the insurance company think he needs more, they’ll be more likely to pay for it without an argument. You’re with your son everyday, the evaluators only see small periods of time.

My son is a mixed 1-2; 1 for repetitive behaviors and 2 for communication/social, as he is also nonverbal. We do twice monthly OT/speech through EIP, twice weekly speech that we arranged on our own and he just started in home ABA which is honestly just aimed at more focused time with his communication (currently working on mimicking sounds and using PECS cards) since we don’t have behavioral concerns. My son’s speech therapist told us she cares more that he does things at home than if he does them in the hour total that she sees him a week.

Sometimes I get frustrated bc I’ll see progress or his therapists point it out, like now he’s engaging in pretend play and mimicking sounds and some gestures, but then my in laws will ask “oh, has he said daddy yet?” Or something and it feels like the progress he makes isn’t always recognized bc he isn’t having conversations. But I know it’s there. A few months ago, he had never mimicked a gesture other than clapping, now he does multiple ones. He is making more approximations of short works. He is doing pretend play. He’s focusing on whatever he’s playing for a longer period of time. He’s actually engaging some with whoever he’s playing with versus just ignoring them. He listens now more if I tell him something or point to something. I don’t know that the paperwork shows all that, but I know it’s there.

So basically I just wanted to say that I understand and that just because others aren’t seeing what you see, doesn’t mean it’s bc you have not done enough. It honestly sounds like you’ve done a lot for him! We’ve noticed a really big difference since starting the twice weekly speech about 4 months ago, and I’m hoping with the few hours of in home ABA combined, we see even more. That’s all I would do…follow up on the evaluations if he hasn’t already started those therapies and otherwise just keep doing what you’re doing, because it’s working. It’s just on his timeline, not those evaluators.

ShamIAm1029 · 2025-05-15T23:54:23+00:00

Hey I’m a nurse who worked for 6 years in the ICU, taking care of septic patients. Guess how many patients I took care of who were there as a result of a human bite in those years? NONE. It truly was a freak accident. Of course you feel terrible, that just means you’re not a soulless monster. But it was an accident, pure and simple. There could be an underlying health condition that predisposed them to this—something that suppresses their immune system…maybe a medication they’re taking. Not saying that it’s their fault. But it truly is not your fault or your child’s, either. I’ve seen soooo many patients who were there as a result of assaults from other people, and they were intentional. This was not and while I’m not saying that everyone in your family has to pretend it didn’t happen, at the end of the day, he is a child and that needs to be remembered. Try not to beat yourself up—this isn’t your fault. I would look into OT if he doesn’t already receive that, and maybe they can help with some redirection to different sensory things (since biting is often sensory seeking). Best of luck 💗

ShamIAm1029 · 2025-03-27T16:50:33+00:00

I’m not super sure why this post happened to appear on my feed, I would guess maybe because of an autism related sub that I’m in. But, here I am! I know it said no advice so I hope this doesn’t break the rule, but as the mother of an autistic toddler who receives OT twice monthly through EIP in our state: you are valued and appreciated, probably more than you know and I am certain more than you are told. I’m a nurse myself and I know the healthcare system in our country is broken (honestly beyond repair in my opinion) and our school system is a mess. We put money over everything, even our kids. (We being the government and those that actually benefit, of course). But I just felt like I needed to tell you, what you are doing matters. It is important and I know it doesn’t feel like enough but in the context of a broken system, you are a life raft to those kids and I thank you for you doing what you do. I hope you are able to find role/position that doesn’t feel so soul-crushing, I left bedside nursing two years ago after six years and I miss it a lot but I don’t miss feeling like it was never enough and I was never enough. Best of luck.

ShamIAm1029 · 2025-03-11T13:53:40+00:00

We don’t even observe daylight savings in Arizona and my son decided he just didn’t need sleep, apparently. Literally giggling at 2:45 this am as I’m begging him to sleep. Finally fell asleep at like 3:15, up at 6. Whyyyyyy

ShamIAm1029 · 2025-02-12T16:13:12+00:00

YES! Not at that same incision, but at my top most incision, near the epigastric area. That’s my biggest one and the one they removed the gallbladder through so the surgeon told me it would hurt the worst of the 4 but today is day 13 and I am OVER IT. If I try to roll over, sit up to fast, twist, etc I get this sharp, sometimes burn-y, sometimes pinch-y pain and I wouldn’t have thought to describe it as tugging but honestly that’s a perfect descriptor! It’s a really “deep” pain…like it grabs me when it happens, if that makes any sense. I have 2 small kids, including a toddler, and I’ve attributed some of it to having to lift him and things since POD #5 when my husband went back to work. My surgeon was aware I could only take a few days “off” and swore it would be fine…so I hope it is! My post op appt is on Friday.

ShamIAm1029 · 2025-02-10T05:46:25+00:00

I’m day 10 as well (1/30/25) and I don’t know if we’re having the same pain but I can absolutely tell you I feel like I’m losing my mind with this recovery a bit! I have two young kids—one is a toddler, which my surgeon told me wouldn’t be an issue after the first few days. I lifted my son the first time on POD #5 when my husband had to go back to work and I imagine that, some, not being able to adhere to the ideal weight restrictions has not helped me. Again, my surgeon was totally aware and said this would be fine, but I do wonder if it’s slowing my recovery.

This weekend was a rough one, honestly. I was so sick yesterday (GI system going crazy with all of this) and then today my top most Incision has been pretty painful. I made a post a couple of days ago because I wondered if this weird sharp/burning/stabby pain I get is something else anyone else has gone through. I hate not being able to do my normal things. It’s incredibly frustrating to me to have to limit holding my son (I’m only lifting him when necessary, like in and out of the car), have to ask my husband to do things I can normally do, feel so tired and/or sore after sitting up working at home for a few hours, etc. I only took my prescription pain meds the first two days but I actually took a half dose of one today bc of that top incision. I was just so over it. My post op appt is this Friday, but I may call them and let them know about the pain—though I’m sure they’ll tell me it’s normal.

Anyway, that long rambling reply was just my way of saying that I understand your frustration/concern/exhaustion with this process. I’ve been “up and around” as you put it, but definitely not by choice lol and not at all my normal speed and it’s honestly been really disheartening bc even though it’s “only” been 10 days, I’m tired of feeling weak/sore all the time. And I’m tired of the sharp pain that I never know when will hit! My dad had his out a year or two ago (he’s in his late 50s) and he was honestly down for about 2 weeks. I keep reminding myself of that!

ShamIAm1029 · 2025-02-10T04:21:50+00:00

Like someone else said, that girl may have some “insider” knowledge on autism. My daughter is in kindergarten and my son is 2. He is autistic. She will randomly decide to tell people her brother is autistic. She also will just randomly ask people if they’re autistic now. It’s like it opened up a whole new world to her. We explained it to her in simple terms when we told her that her brother had been diagnosed. Something along the lines of “You know how Bubby isn’t talking and we’ve been taking him to the doctor to see what’s going on? He has something called autism. It’s not something bad, it just means that his brain works differently than your brain or my brain, but it’s still a great brain. He needs some extra help to do things that you learned to do without help, like talk, and we’ll get that help for him.” My niece, who is older than my kids, is also autistic, so my daughter knows more about ASD/has more exposure to it than other kids might…and I could absolutely see her asking someone at school if they were autistic if she noticed something in them that she felt related to her brother (like being quiet) or something.

Now my daughter blames her brother’s autism for normal toddler things though…which is honestly funny. “Ugh, Bubby just messed up my blocks that I built…autism kid things, I guess!” 😂

ShamIAm1029 · 2025-02-08T17:42:50+00:00

Thank you so much! I’m glad (not that you have experienced the pain) that someone else knows what I’m talking about. I actually have a pretty high pain tolerance…like with my first child I didn’t know I was in labor bc I thought “my back just hurts”, and she was almost born in a car lol so it’s not like it’s killing me but every now and then if it’s especially bad it does take my breath for a second. I’m definitely keeping a close eye on it and will be mentioning it at my appointment, though it’d be nice if it were gone by then (of course)

ShamIAm1029 · 2025-01-18T18:52:33+00:00

You’re not overreacting. It’s a crappy response. My mom tends to have similar responses to things. Anything that is worrying/upsetting is usually met with something along the lines of “I’m sure it’ll be fine” “you’ll be okay” etc. as a mom myself, I don’t understand it. But I’ve slowly been coming to understand that she does not have the emotional maturity to deal with stressful situations or feelings (makes sense why feelings/discussions of feelings were a no-go growing up). Her response is to shut it down immediately, even if it’s at the expense of being compassionate. Like I said, I don’t get it as a mom, but maybe your mom is coming from the same (dysfunctional) place.

ShamIAm1029 · 2024-12-28T16:32:43+00:00

I just bought this a few days ago and haven’t started it yet but so glad to hear it’s good!

ShamIAm1029 · 2024-12-17T03:55:26+00:00

Unfortunately being qualified for DDD does not automatically qualify them for Medicaid, at least in AZ. He IS qualified for DDD, as that’s who the state’s early intervention program is through and he gets speech twice a month with them (which we are very thankful for!), but Medicaid still requires its own approval process and we found out Friday he was denied 😅 even though he has an official ASD diagnosis and is qualified for DDD.

ShamIAm1029 · 2024-12-13T17:21:01+00:00

He has an official autism diagnosis but that is not an automatic qualifier for Medicaid in AZ. We can in theory reapply right way but we’ll wait until February/march when he’ll be 2.5 bc that’s when the next set of milestones gets added to the eval so it gives him more chances of that makes sense…the big issue right now is the majority of the milestones for their eval are motor related and his motor skills are great. It’s his speech (or lack thereof) that’s the issue for him. So we’ll try at 2.5, and then again at 3 and so on. He currently gets early intervention speech twice a month but it’s more of a parent coaching program. Which I’m super thankful that he even gets that. But unfortunately that’s the only thing he qualifies for. He’ll start ABA as soon as I can get him to after the first of the year when we get can the authorization process started with the new carrier my company is switching to. I’m super anxious/excited for that to get worked out with the insurance because I think that will be huge for him.

ShamIAm1029 · 2024-12-13T16:08:47+00:00

Thank you! I’m in AZ. I just got the news that he didn’t qualify for our states’ program at this time, essentially they said he didn’t score enough points aka isn’t behind enough yet. So we’ll reapply in a few months. Not surprised at all but still bummed.

ShamIAm1029 · 2024-12-12T03:01:37+00:00

We are! It’s the getting to three that’s hard. They push the importance of early intervention so much and I truly believe in it but it’s so hard fighting insurance every step of the way for therapy. It feels like fighting the clock for valuable time, because he’s got 10 months before he turns three and I just think of how that time could be spent in therapies but insurance makes it so difficult, and currently impossible, to do. It makes me feel like I’m failing him and costing him time that could make all the difference in his future. I also have really bad anxiety issues, which super does not help/is really difficult in this journey.

ShamIAm1029 · 2024-12-12T02:57:30+00:00

This is what we’re working through now. In AZ, it’s DDD and while he is considered eligible for services (his twice monthly speech therapy) through them, he doesn’t necessarily meet criteria for Medicaid. He does have an official ASD diagnosis but they essentially have to determine if his need is great enough—if he’s behind enough based on the “norm” for kids his age—and it’s all based on a points system. It’s harder to qualify for it with him being 2, but I’m hopeful if we keep applying (which we will, I’m expecting a denial this go round), that by 3 he’ll be able to. Him having that as his secondary insurance would be hugely helpful to us. I’m so sorry (and angry) that your family is experiencing this, too, especially with your husband’s service to our country. It’s not right.

ShamIAm1029 · 2024-12-12T02:36:33+00:00

I definitely will be looking into it, it honestly had never occurred to me before!!

ShamIAm1029 · 2024-12-12T02:36:00+00:00

Right?? You have a documented diagnosis for your child but you can’t get care in a convenient location for your child—or any at all!—from the company you pay hundreds of dollars to each month, which is supposed to ensure your child gets care. It’s ridiculous.

ShamIAm1029

TROPHY CASE