Autism thread

Korik wrote:

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.

In defense of many schools, kids with more severe behavioral issues, learning disabilities, intellectual disabilities, etc.- they're not really going to get too much out of a typical classroom setting anyway. My son, for example, who is nonverbal and has almost no receptive understanding of language. Kids like him are going to learn more in a specialized setting where they get more one on one attention from experts like speech therapists, ABA therapists and so on. So it's not necessarily that the schools are "washing their hands" of kids.

That said, a lot of schools are underfunded or generally just do a poor job with special needs kids. In those cases, they're pretty much just pulling the kids out to prevent problems with the mainstream class and doing the bare minimum of actually trying to help them. "Washing their hands of them" is probably an accurate description.

I really, really wish there were some kind of like a US News and World Report ranking of colleges for special needs schools. As it is, we moved recently in large part because we needed to go somewhere with a better public school system, but the correlation between good school systems in general and good special needs schools is not 100%. A lot of our decisions were made on second hand impressions we got from various parents, teachers and other professionals which may or may not be accurate. Also, all it takes is for one key person to retire or quit and the whole program can go downhill instantly. I've heard of this happening in at least two places. It's scary.

Eleima wrote:

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.

That makes sense. It's similar at my son's school but it's all the same school. There is a different school nearby with a specialized program for more severe symptoms but some of the kids in the special class are more disruptive and spend most of their time in that class instead of mainstream.

You had made it sound like they just send him home to you the rest of the time!

gewy wrote:

Also, all it takes is for one key person to retire or quit and the whole program can go downhill instantly. I've heard of this happening in at least two places. It's scary.

We've gotten lucky I think with school but we saw this with early intervention. Really good therapist left and the next one was worse than nothing.

Thankfully, no, he's not home the rest of the time, although that was how it started out, before we managed to get a spot in a specialized center (took about a year). I work full time, I've always insisted on it, despite my ex husband's demands.

It’s happening gradually but surely; it’s getting harder and harder to go places with our son. He’s just getting so big and hard to manage physically and of course he still can’t follow any kind of directions. Will he ever? I’m not too hopeful anymore. Plus it used to be the best strategy for his meltdowns was to take him somewhere and distract him. Now it seems the best move is to leave him alone and let him roll around on his bed. Not good if we have a 30 minute car ride to get home when he’s in rough shape.

My prediction that we would eventually become shut ins seems to be coming true. It’s not too bad since he still spends a lot of time at school which gives my wife a break and keeps him busy and engaged for a good chunk of the week. I still get the break (if you can call it that) of going to work.

We did finally find a babysitter but don’t think she’s gonna work. Second time we used her our son gagged himself and puked on his clothes and wife says she just stood there paralyzed and grossed out while he got it everywhere. Luckily my wife hadn’t left yet so was able to contain the situation.

We definitely need someone who’s not afraid to get their hands dirty. Anyone have experience hiring a special needs babysitter online- like from Care.com or something?

Is there any kind of Respite Worker program? Ours is managed through Child and Family Services - you might have some success going through them (speech therapy, occupational therapy, respite...), our case worker even coordinates with the school for EA (educational assistant - teachers’ aides) funding. It’s a god-send.

We’re in Canada, though - land of socialist Medicare, so ymmv.

I'm sure this has been discussed somewhere in the 35 pages so forgive me from asking again. I have a 5 and a half year old diagnosed on the spectrum. Any video games recommendations for this age?

He likes Katamari on the iPad (the 3D one not the newer Touch Katamari version) but doesn't understand the goals. He just likes rolling things up. He does great on the controls, I could never play it on the iPad like he does. He also somewhat likes temple run, fruit ninja, and matching games. He also gets a pretty good beat going on a drum app.

I've shown him a handful of console games but grasps them less than the iPad games, especially the controls. He likes watching Rocket League but given the chance to play he just makes the car go forward and refuses to steer without any interest in hitting the ball or anything. He can do this for 10-20 minutes without getting bored. Same deal with Burnout Paradise. I also tried New Super Mario Brothers WiiU similarly wasn't interested in more than running forward but unlike the car games was done in like 2 minutes.

So I think some of this is he's completely trained on iPad controls and some is he's not ready for games. I don't think it's an attention span thing as he can focus on preferred tasks for fairly long periods. I think the next thing I'll try is Katamari Forever on PS3 (which I have to dig out from a box somewhere). It's a game he knows but with non-iPad controls. There's no Katamari for PS4 right?

Try any of the LEGO games that you think he'd be interested in. My kids love hopping onto them and running around in the open world. I help them through the story, but I normally just download a 100% unlocked save game instead of bothering with going through all the other unlocks. So far we've gone through Super Heroes 1 and 2, Batman, Batman 2, The Avengers, and The Incredibles. I have Star Wars and Pirates of the Caribbean on the Wii but haven't done much with them. They're super kid friendly with negligible penalties for dying, and they mostly hold your hand through most of the game.

My 6 year old loves just running around in Goat Simulator on iPad. It doesn't really have any point so no pesky rules to understand...

My 6 year old absolutely adores Monument Valley and he’s really good at it. Aside from that, Angry Birds and Fruit Ninja, mostly.

Does anyone have a good resource for making a Pecs book? Everything I am seeing is pretty all over the place in terms of that they have. I kinda just want a whole list of clip art than I can print and laminate.

I'm not sure. We're using the PECS app on the apple store, which works really, really well. I have some supplies for a "meatspace" book, though, if you want them, I can ship them to you.

How does PECS work on an iPad? Do you keep the iPad, or do they just bring it to you? Typically, PECS works as an exchange of a picture for something in return; it's thought to be more concrete that way. (Personally, I'm not a huge fan of PECS as it's normally designed, because it seems to have a built-in cap on vocabulary and usability. However, an electronic implementation might help expand that a bit.)

Eleima wrote:

I'm not sure. We're using the PECS app on the apple store, which works really, really well. I have some supplies for a "meatspace" book, though, if you want them, I can ship them to you.

You know, I never really thought about an iPad app. I'll take a look around and see which one can be good for my son. We are a few months in prompt speech therapy so I don't really want to rely on him using Pecs all the time. I just know he gets frustrated when we can't understand what he wants.

The way it’s implemented for us, he brings and shows us the iPad. Got an iPad mini, it does the job well enough. The app isn’t cheap though, 50€ iirc. He’s using less and less as his speech gets more intelligible, but still. It’s there should he need it.
Offer stands, Tempest.

We briefly tried PECS with our son but he never really picked up on it. One of the therapists suggested instead of using clip art, to take and print out actual photos of the objects (his favorite snacks, his sippy cup, the toilet, our car, etc.) Some kids have a hard time with the more abstract nature of the clip art. Granted, our son seems more impaired than most...

We did transition to an IPad app- Proloquo. Seems more versatile and convenient overall, and if we’re going to be spending years trying to teach him a communication system, might as well go for something with a higher ceiling.

**TW: child harm and death** Skip the spoilers for my question.
So this came up in one of the adventure game club threads:

Eleima wrote:
Spoiler:

Honestly, I'm not a fan. Child death is already a theme I struggle with, being a parent, and having kids that are different and more at risk (just this week, another non verbal ASD kid "escaped" from his carers at his specialized center, here in Paris, and he's been missing for ten days. We're all fearing the worst).

Stevintendo wrote:
Spoiler:

I'm really sorry to hear about that kid, Eleima. Has there been any news since?

Eleima wrote:

Totally unrelated to the game and very unpleasant stuff in response to the above post:

Spoiler:

No, no news as of yet. Apparently, he’s been spotted several times in the Parisian metro, but nothing solid and he hasn’t been reunited with his family. It’s very concerning. Some reports have him hanging out with a young man who is “of interest” to the police. I fear he is being preyed on in the worst possible ways.

Spoiler:

News just came back to day and the poor boy was found in the Seine river. My heart just breaks for him and his family...

Has anyone considered a GPS tracking device or some similar mode to track your kid's whereabouts? At this stage, I'll admit to being a heartbeat away from implanting a chip in him. Maybe even both, even though my second kid is verbal...

I think about this all the time and it weighs heavily on me. It hasn’t reached the point where we’ve had to seriously consider it, but as our son gets bigger, stronger and faster, it may be this or just not going out in public anymore. We have the advantage (?) of just having one child to wrangle though.

That is heartbreaking!

Mine is verbal (and catching up thankfully!) but I still live in mortal fear of this...

My son's meltdowns have become an every day occurrence recently. Usually several times a day. We have no idea why or what we can do to help him out. We tried all the obvious things: give him food, drink, put tylenol or advil in his juice, quiet dark room, movement, pressure, car rides, talking to him, singing to him, giving him a different toy to distract him, TV... nothing seems to work really.

Probably the next step, which I'm really dreading and very ambivalent about, is to try an antipsychotic medication. We've already tried multiple other, more benign medication classes and they either didn't help or had side effects. I hate to do this though since he's already pretty overweight and has a very strong family history of diabetes on his mother's side.

I'm halfway toying with the idea of trying CBD oil despite my natural skepticism and disdain for unproven treatments... especially ones that are hailed as panaceas for multiple conditions based on sketchy anecdotes and biased testimonies.

gewy wrote:

My son's meltdowns have become an every day occurrence recently. Usually several times a day. We have no idea why or what we can do to help him out. We tried all the obvious things: give him food, drink, put tylenol or advil in his juice, quiet dark room, movement, pressure, car rides, talking to him, singing to him, giving him a different toy to distract him, TV... nothing seems to work really.

We had that from about age 2 to 3, I couldn't imagine those at this point. I was hesitant putting my kids on any medication but eventually succumbed, and we got really lucky there too (both kids are on the same medication and dose for ADHD, and both have responded really well). Personally I'd probably try the CBD oil first, and the antipsychotic later, just on the factor of (and I may be very wrong here) the potential side effects are less worrisome with CBD. Then again, I have almost no experience in medicine, so take that with a massive grain of salt.

On my front... We just moved back to MD from VA, and the school had to take their VA IEPs and basically translate them into MD services. Apparently VA has a bit stricter guidelines on how much services they can get per week. Sabastian, for instance, was only 5 minutes a week away from having to be pulled into a special needs class per VA. That policy doesn't exist in MD.

Anyway, I had to meet with the school psychologist the other day to go over a form that basically took all of Tristan's autistic traits, spit out a number, and put him on a scale. He fell just in the range of mild/moderate autistic traits, which may or may not impact his education. One of his teachers reported no observable traits, while another reported moderate, and the variance is mainly due to the difference in environment and curriculum. Not anything surprising.

He still qualifies for services on several other factors, but his being autistic is mostly just a side-note in his file at this point.