Autism thread

Paleocon wrote:

from my brother's facebook feed.

It’s never a dull moment in the [name redacted] household.

[name redacted]’s teacher called me from school to inform me that he went outside and swallowed a 4-5 inch live snake. They called poison control but he seems to be fine.

Live report tomorrow morning from the bathroom.

He ate it just like a snake. Nice.

I hate that my son’s sixth birthday isn’t a cause for celebration. These par few months haven’t been easy and these past couple of weeks in particular. He’s starting to hit himself and throw himself against the walls. He hurts himself. He’s scratched his face on several occasions. He’ll even hit himself against my arm, leaving bruises on me.
At his specialized center, they’ve started using this technique called PCM.

I guess it’s disheartening, not only because we’re not making any progress but also because he’s getting worse, hurting himself in the process.
It’s hard not to think that the split with his father had a lot to do with it, but it wasn’t easy last year anyhow when we’re still under the same roof. I don’t know. But I don’t see how it could’ve gone any differently (except for us to split earlier).

On the bright side, my youngest (3yo) is doing well with school, aside from a few meltdowns here and there. His memory keeps astounding me, he can read most letters and quite a few numbers.

That looks a lot like harsh stimming behavior, Eleima. Ugh. It must feel terrible and helpless to have your son doing that. I hope they find a way to turn it around soon. Even if some of it is about the split, keep reminding yourself that life changes, and sometimes that change is dramatic. Encountering this fact when he's young and has a loving mother along with additional help is going to be better for him in the long run.

Hugs, Eleima.

Thanks, guys. Yeah, you're right, LouZiffer, his specialized center said it's probably stimming behavior. I'm gonna try and give him alternatives like one of the hand spinners I bought (and have been met with mild success at best, at least so far). Most of the time, I just rush over and try to keep him from hitting and just hug him. That usually works, and I'm always up for hugging them, thankfully. (I know that not all on the spectrum are, but we are) I know that our old ABA therapist would probably tell me not to, because I'd be reinforcing an "undesirable behavior", but eff that. I hate seeing him like that.
Another theory I have is that some of his permanent teeth might be coming him, maybe it hurts? I don't know.

EDIT to ADD: I've just come from his room because it's 10pm and he still isn't sleeping. I was all set to scold him, and he just, I don't know what it was, maybe his soft "dodo" (sleep), I just hugged him, and he put his little arm around me, and my heart's gonna burst because I just love him SO - GODDAMM - MUCH.
Sometimes it feels like the hard times are harder than with typical kids, but the good times are all the sweeter.

That's awesome, Eleima. I really believe there's a special communication that happens between a parent and a child which can transcend any barriers. Even though consistency is a big key, that's a marathon we run and sometimes there are more important things to do during it. Seems like you instinctively knew he didn't need scolding in that moment, and something more important happened.

Your old ABA therapist can shove it. Stimming is self-care behavior, and redirecting it toward something less destructive is reinforcing the fact that there are better choices available for that outlet. That self-care is extremely important. Incorporating other choices into his framework is probably going to take trial and error as well as repetition before he's comfortable with them.

Eleima wrote:

EDIT to ADD: I've just come from his room because it's 10pm and he still isn't sleeping. I was all set to scold him, and he just, I don't know what it was, maybe his soft "dodo" (sleep), I just hugged him, and he put his little arm around me, and my heart's gonna burst because I just love him SO - GODDAMM - MUCH.
Sometimes it feels like the hard times are harder than with typical kids, but the good times are all the sweeter.

It's great he has you as a mom Eleima

“you’re so brave! I couldn’t do what you. When I got a Down syndrome diagnosis when I was pregnant, I aborted”

I've been trying to figure out what to type in response to that and I really can't. Just wrong on so many levels.

Self-injury sucks so bad. My son has gone through periods of head banging, punching and slapping his head, gagging himself with his fingers to the point of vomiting, biting his hand and pinching himself hard enough to leave a trail of bruises up and down his leg and abdomen.

The ABA people weren't insistent that we avoid trying to reinforce it. They basically just asked one question: "Does he do it even if you're not around?" Since they answer was "yes" they were satisfied that it was sensory-seeking and not attention-seeking and encouraged us to focus more with the OT to get his sensory needs met. This wasn't overly helpful unfortunately. We have never had much luck with sensory diets and the like. But it does seem like his overall level of self-injury has declined from a couple of years ago when I was honestly worried he might give himself CTE from all the head-hitting and we had him wearing a helmet.

Thanks, Gewy. I'm glad you're speaking in past sense. "has gone through..." I'm really hoping it's a phase, because I don't like seeing him bite himself and hit himself.

Just wanted to write out how my son was doing since his diagnoses almost two years ago. He is doing really well in E I school, at home ABA and OT. He's is making a ton of progress and it's unbelievable how smart he is. He's about to turn 3 and he already knows his 1-100's. He is still nonverbal so we just ask things like "show me number 62" and he points. He's getting to the age where the screaming is starting to be a head turner to people but I really don't care what other people think anymore at this point. He did repeat "I did it!" once and then never again. We had such high hopes after that...

Aside from communication, the hardest thing to deal with at the moment is social events. We have to skip a lot of parties either because there are too many people and it and will be too overwhelming for him or it's a strange place. He's gotten better in regards to strange places but it still makes him about 25 minutes to adjust to a new environment. Most of the time he tries to run to the door and screams his head off while basically throwing himself around. We are trending in the direction of this hopefully faded away in time but we are terrified of how it will be when he starts in a new Special Education Preschool. He's such a loving a cuddly kid once he warms up to you but he needs that time to adjust.

Anyway, that's all this madness in a bottle. My wife and I are stressed out of our minds most of the time but he truly makes us so happy and I love him for who he is an everything that he is capable of. Hearing him laugh, smile and enjoy playing really makes all of it worth it. It's mind blowing how much he understands and knows even though he can't communicate back to us at the moment.

Here he is loving his swing that he never wants to get off of

He sounds like a wonderful kid Tempest, and he has a super cute smile. From what I hear, being a parent to any child is stressful (I have a little while before I learn for myself), but he's lucky to have such loving and patient parents.

Going to crosspost this to the Random things I love thread as well.

Hairdresser tries to cut autistic boy's hair, manages after 4 years. Opens salon, trains her staff to learn to adapt to "special needs" clients.

(Note, "special needs" is what she calls them.)

Sadly, my son's meltdowns have been on an upswing lately. He's been having them most days, often several times a day, for longer durations too. Just crying, stimming, screaming and biting his hand. Such a helpless feeling, not knowing what's wrong and how to alleviate his distress.

gewy wrote:

Sadly, my son's meltdowns have been on an upswing lately. He's been having them most days, often several times a day, for longer durations too. Just crying, stimming, screaming and biting his hand. Such a helpless feeling, not knowing what's wrong and how to alleviate his distress.

I feel you on this. My son is non verbal so my wife and I are franticly trying to figure out what he want's and by the time we do figure it out, hes already crossed the meltdown line and there is nothing we can do but wait it out.

I can't picture anything more stressful than having a child that is Autistic. We are constantly trying to surface for air and keep getting dragged back underwater. It's really taking a toll on our marriage. I don't think there is a day now where we arent bickering about some stupid BS.

Yep, definitely feeling the marital strain here as well.

Unfortunately, I think the human brain must be hardwired to experience significant distress at the sound of a child crying, especially when it's your own. When my son starts melting down, or even fussing a little bit, I can feel my physiological reaction (increased heart rate and blood pressure, breathing faster, muscles tensing, etc) as the adrenaline kicks in. It's that fight or flight response, and I'm sure it's a big factor in the increased shouting and general tension between me and my wife. And when it's not occurring, there's always the anticipatory anxiety; waiting for the next shoe to drop.

Conversely, I can feel my entire body relax when my son is asleep even though I'm still sneaking looks at the monitor for the camera we have set up in his bedroom.

I suspect this kind of long term pattern can't be good for us physically, much less emotionally. Not sure what to do about it though.

My 6yo on the spectrum has been in K this year and has done fairly well but going into 1st grade and a more academic setting-- I wonder how they handle that. Do they fall behind or do they move them with their age groups?

He seems to be roughly at level now but when he gets tired he'll just stop cooperating and go sit in a corner or under the table. You all with experience in or through these years have any insight on how that gets handled as they get older?

His teacher's/therapists at school all seem to be wait-and-see. Aside from the speech delays, he really hasn't borne much resemblance to the usual autism checklist / handbook so, despite being really wonderful with him, the team working with him has never been entirely sure how to proceed.

Objectively I know it could be much, much worse but, wow, it's hard not to worry at every worst case scenario imaginable.

My son's school assigned EAs to him, and the created a modified curriculum. The expectations are lower, but they did move him along with his peer group. He's in high school now, and will/can stay until he's 21... he'll need at least that much extra, to catch up - they'll probably spend most of that "catch up" focusing more on job skills, specifically.

gewy wrote:

\

Unfortunately, I think the human brain must be hardwired to experience significant distress at the sound of a child crying, especially when it's your own. When my son starts melting down, or even fussing a little bit, I can feel my physiological reaction (increased heart rate and blood pressure, breathing faster, muscles tensing, etc) as the adrenaline kicks in. It's that fight or flight response, and I'm sure it's a big factor in the increased shouting and general tension between me and my wife. \

I think you nailed it with this statement. I never really could quite put my finger on what is going on but this makes so much sense.

Thanks Wink for the perspective. As yet, he's holding his own in K academically according to the teacher.. but of course-- it's Kindergarten. I guess I'll see what 1st brings.

My son will still "nope the eff out" of assigned work, etc... paces, gets argumentative. When he was younger he got angry and chased the teacher around the class, wielding a set of scissors... I had to leave work to collect him, from the office. He had another incident in junior high (middle school) where he was suspended for 2 days because he threatened to shoot some kids that he says were "making fun of him" - I had to assure the school that we don't even own a firearm; it was beyond his ability to follow through, but they have to take the threat serious.

Good luck. We're all pulling for you.

My son is usually not aggressive and has been mostly cooperative-- until it got warm and he'd rather play outside. Has been a much rougher few weeks... seems to happen around the same time last couple of years.

Thanks!

Heard son coughing in bed around midnight yesterday and went in to find him covered in puke and shivering. Not the first time this has happened unfortunately. Probably just a virus.

Wife and I sprang into action and carried him to the bathroom. She bathed him while I changed his linens and tried to pick the gobs of vomit off of everything before putting it in the washer. Luckily it didn't get on the carpet too badly this time. Of course, he started throwing up again as soon as he finished bathing. Also luckily, neither my wife nor I were especially tired or in a bad mood, so we didn't snap at each other like we often do.

Anyway, this is something I'm sure every parent goes through. The added problem though is that the whole time we're doing this I'm thinking, "How the hell are we going to manage this in 15 years when he's a grown adult and we're approaching 60? Much less in 20-30 years? And who is going to care enough about him to gently clean him up when we're gone?"

I really wish I had some inkling that he would one day know that he needs to throw up in the toilet or a trash can, but I just don't see it. Hell, I'm getting steadily more pessimistic that he'll ever be potty trained.

Long story short, worrying about his future sucks.

One good thing... at least he's in a relatively good mood and smiley today despite obviously feeling like crap.

Yeah, my 5 year old had an ear infection recently and it would have been so much easier if he could just communicate what was hurting him. It doesn't help that he frequently covers his ears when he's perfectly healthy so that we didn't notice he could be doing it due to pain.

I feel for you, Gewy. Mine also had a stomach bug during the last week of April, and was puking all over the place. I'm doing this solo now, so no marital strain anymore, that's a relief.
Not much hope of potty training either, although he does pee in the toilet during the day, that's the only thing.
At 6, he's being slowly phased out of standard school, from 4 half-days at the beginning of the year to only one now. And he was already repeating the last year of kindergarten. So yeah.

That worry about who will look after him after I'm gone, or if he'll need it, is what keeps me up at night too.

How do they phase a child out of standard school? Is there a special ed class room they phase in to?

Saw this good comic explaining how the "autism spectrum" is not linear:

Korik wrote:

That worry about who will look after him after I'm gone, or if he'll need it, is what keeps me up at night too.

How do they phase a child out of standard school? Is there a special ed class room they phase in to?

Sorry, life happened and I didn’t get back to you immediately.
His behavioral issues are incompatible with him staying in class, sitting down with kids who are learning how to read and write. Even with an aide. So from 4 half days a week, he’s down to one. That’s how he’s being phased out of school.

No worries!

Mine gets pulled out as needed as well-- but he's still in the same school and same time just a different class. I was asking do they put him in another school or just leave you on your own? You make it sound like that just wash their hands of kids who aren't mainstreamed.

Korik wrote:

You make it sound like that just wash their hands of kids who aren't mainstreamed.

That's a bit the gist of it. The public education system here doesn't do very well when it comes to integrating "different" kids, not just kids on the spectrum but kids with Down syndrome, for instance.
The way it works here is that my eldest is mostly in a specialized center (institut médico-éducatif) which has a whole panel of specialists, from psychologists to occupational therapists. They do the bulk of his behavioral therapy and he has an aid for "regular" school. Depending on how he does (mostly from a behavioral point of view, so he doesn't disrupt class), they decide how much "regular" school time he gets.
Ugh, sorry, I don't feel super articulate, so if you still don't get it, that's entirely on me.