Autism thread

gewy wrote:

Parent conference is later this week and we'll address it then. I fear my wife was spoiled somewhat by the previous autism center and nothing will measure up though.

This new school Tristan is in is kind of spoiling me. The special ed teacher uses an app called Class Dojo, which she uses to message me during the day. Today, for instance, they started trying training underwear. She shot me a message right after class started about him making a fuss putting them on, and I let her know that I talked to him about it before getting on the bus, and he was upset just talking about it. Later she asked me to bring some pants to the school, and I was able to get over there a few minutes later. The communication with this school, or at least this SE teacher, is worlds beyond what I'm used to.

Bruises on the legs, unless they're severe, I'd probably chalk up to a new environment. Multiple new bruises every day, I wouldn't expect each to be documented, but I'd expect something mentioned at some point (IE, Tristan keeps hitting legs on table, or keeps falling on playground, etc). Then at least I know they're paying attention, and it's just him being clumsy. They can't stop him from hurting himself at all, but if they don't know how they're happening it'd be a huge red flag for me.

For what it's worth, my daughter shows bruises on her shins a lot. I think she gets them from sitting with her knees up when she's at her desk.

They don't seem to bother her, so we don't worry about them.

The parent conference went OK and eased many of our concerns about how on top of things the school is.

Of course there's always something to take the place. We have an ongoing mouse infestation (gross) in our new apartment so we're having to constantly clean up after our son. He's such a messy eater. Plus he has been getting up at 2 am every single night since moving.

And then there's listening to wife's sister complain about how much of a pain their upcoming vacation to New England and Canada will be. Meanwhile, we're not sure we'll ever go on a vacation again, for the rest of our lives. And such gems as "I think raising normal kids is just as stressful as raising special needs kids; it's just a different kind of stress". Real considerate when your two children are in college and working, while mine will very likely never achieve functional language abilities and I'm not even 100% about potty training during his lifetime. And it's hard to see where a group home is not in his eventual future. Glad I wasn't there to hear that. I probably would have said something regrettable. She just has no perspective. It's infuriating.

Gewy, I know how you feel. It's the kind of insensitive comment that shows some people have zero empathy, no perspective. Drives me right up a wall.
Glad the parent conference went well though.

I think my wife is on the verge of an emotional breakdown. Already called me up crying 3x this week when little guy was being loud and destructive and pulling hair and biting and so on. I'm pretty sure sleep deprivation is a major part of her decreased ability to tolerate things. He's been getting up each night after 3-4 hours of sleep and it takes him a good 2 hours on average before he goes back to sleep. Wife is convinced we are going to get kicked out of our apartment because he's yelling and banging on the walls, furniture and his toys. During the day is bad enough, but he does this at 2 am. I wanted to put a safety lock on the outside of his bedroom door so he wouldn't be able to get out and roam around at night, but she thought it was mean to keep him locked in there.

What do you guys think? Should he have the freedom to get out of his room at 1 am at the risk of sleep deprivation for everyone else and possibly losing our apartment (I actually think that's kind of unlikely, but I still don't want the neighbors to complain)? Or should we go on and put the lock on. I do feel sorry for him if he's wide awake and stuck in his dark room, but on the other hand, being able to leave probably contributes to him not getting enough sleep as much as us.

He also broke down the safety gate to the kitchen, so we can't leave any utensils or plates out or he'll break them or otherwise injure himself. Not sure what to do about that.

So sorry, Gewy. Any chance a family member or services could help out for a bit so you can get a breather?
Aside from that, a safety lock might be your only choice, but I fully understand it's not one you would feel comfortable with. If you think it's cruel to leave him stuck in a dark room, maybe a night light could be an option? Does he use light switches at all? I know my eldest is quite adept at turning the light on if he so chooses, even at 3am.
My thoughts are with you.

Should he have the freedom to get out of his room at 1 am...?

No. That I can answer pretty comfortably, but I'm not sure what the best option would be for stopping him. When my kids were younger I very rarely went in to comfort them when they woke up in the night. I'd listen to them cry, then calm themselves, then drift back to sleep. After a while the amount of time spent doing this became less and less. I can't remember the last time one of them actually woke me up at night. Then again, they weren't nearly as active as yours is, and if they did leave their room, it was normally to come crawl into ours.

Letting him roam around is going to give him ways to stimulate himself. Going in there with him will give him stimulation. IMO, limiting the stimulation is the only thing within your control. As for the kitchen, you might want to go with paper plates and plastic utensils for a while. Not the best idea for long term, but until you have something better in place, there's only so much he can do with a plastic knife and a paper plate. He'll make a mess ripping them up, but better to clean up the mess than clean blood off him. Best of luck to you. If you ever find yourself in the VA Beach area, PM me, and I'll watch him for a night or two so you can get a break.

Tristan is mostly out of diapers now. I still have to put one on at night, and he goes in it every night, but during the day he's in underwear. Losing the ABA therapy wasn't the end of the world, as the special ed teacher he has now is absolutely amazing. Took her less than a month to get him out of diapers during the day. I still need to set ABA back up for after school hours, and at this point I've more-or-less resigned myself to driving for Uber just to bring in some extra money to keep us afloat financially. With all the appointments, and my wife getting pulled for CVN-73 (with the expectation that she'll get pulled again and again, for weeks at a time, she just got back from Haiti), I just don't feel comfortable getting full time work with set hours.

Well, wife gave up and tried to put the lock on at 3 am last night. Couldn't figure it out or even reattach the doorknob. Called me crying about this, so... yeah.

Part of the problem is we're temporarily living apart due to work issues and I can't help bear some of the sleep deprivation myself.

When I get back up there I will put the lock on. If this keeps up, wife will end up in the psych ward or worse. It's starting to rival the postpartum depression when she actually had suicidal thoughts.

Study offers potential breakthrough in care of children with autism

1Dgaf wrote:

Study offers potential breakthrough in care of children with autism

I'm having mixed emotions about that. It's basically exactly what I've been doing with my kids, and we've been having a lot of success with it.

I do feel sad that people seem to need the blessing of people in white coats before they love their kids and try to engage with them on the kid's terms. Especially considering how much trouble came from the last time the Lancet became an oracle for parents of autistic kids. Do we really need a Lancet study to tell us to treat our kids like people?

Considering that previous attempts at dealing with autistic children involved electric shocks until they stop acting so damn weird (which is still going on in some "modern" clinics), I'd say this is a positive step in general, even if the language of the article is basically "here's how to get your autistic kid to stop being such a brat."

I'll agree with DoubtingT on this one. Doesn't seem like much of a breakthrough to me either. Understanding your child, how they function, what they need and respond to is one of the first steps to nudging them in the right direction. But I guess it's always good to have studies that scientifically show what we've suspected.

Seems like most of the "breakthrough" studies follow the same vein. Start some kind of behavioral intervention around the age of 2 to 3 and your child is less likely to be severely affected a few years later. Makes sense biologically due to neuroplasticity.

I just wish there were promising developments for children like mine, who, despite early intervention, remain severely affected. I'm not very optimistic at this point though.

What would really give me some "hope" rather than one of these studies, would be some kind of societal commitment to providing resources to help special needs kids and their families throughout their lifetime. Not holding my breath for that one either.

Another "woe is me" type post. Sorry. But I really don't have anyone to tell this too other than anonymous internet posters.

My wife has befriended a few moms whose kids went to the same therapy program as my son did. Last night she went to dinner with one, and this mom told her she could no longer handle her son's aggression and melt downs and is starting the process of getting him placed in residential treatment. Her son is only 10 years old.

When I heard about this, I honestly started crying*. I just can't fathom the prospect of giving your own defenseless child to someone else... permanently. But, the fact of the matter is this- Unless a miracle occurs, whether my son is 10 years old or 30, I will still probably think of him as a child since he'll be unable to fend for himself. I will still feel the need to protect him and care for him, but we will have no choice but to give him entirely into the care of others. Others who cannot possibly love him or understand him as much as we do.

On a typical day, I just worry about getting through that day's struggles and things are relatively OK (as long as my wife and I are not BOTH sleep deprived- then it gets ugly). But when I think of that day when we have to give our son up... Not sure I'll ever come to terms with this one.

*Granted it probably didn't help that I'm still distraught over the election.

Ouch Gewy, that's really rough. I honestly can't fault that mom for getting her son placed in residential treatment. Even though it's something that I can't do for mine, I can't help but wonder if it might come to that one day. Honestly, don't apologize for "another woe is me post". These situations are so hard, if you can't tell this kind of thing to random anonymous internet posters, who can you tell it to?
I hope you are getting enough sleep. I wish there was something I could do to help, but if you need to vent and talk things out here, have at it.

This weekend has been difficult. So tired of the screeching and the hitting and and destroying everything he touches and the rest.
But then he goes and does something like peeing in a cup during shower time and trying to drink from it.

Yuck Eleima... I'm sorry.

Sounds like you are going through some of the same stuff we are. I feel like we have to maintain constant vigilance to prevent our son from accidentally hurting himself, eating things he shouldn't (I mean non-food objects, not unhealthy food), making huge messes or destroying things in our home. Combine this with the loud yelling and it's just so draining. Going out in public is even worse, since you then throw in the potential for elopement or that he'll hurt some other kid.

The only break is when he's asleep. Even then we are always on watch for when he gets up with a leaky diaper.

I hope you have some support. I can't imagine doing it alone.

Anyway though, I commend your son on having the insight to know that pee looks like something to drink and having the motor planning to get it were he wants, however misguided his plan was...

On a semi-related note, my son discovered an old sippy cup when I was not paying 100% attention to him and proceeded to drink out of it. It wasn't until I tried to refill it for him that I realized it was the one we had lost like 2 weeks ago. Inside it, I swear, it looked like there was a huge glob of slimy snot as big as a golf ball that he had been trying to suck through the opening. I guess that was a huge bacteria colony? Or some kind of fungus? I dunno. Also smaller chunks of growth floating around. Totally disgusting. Luckily he didn't get sick from it, but damn I felt guilty.

If you have Netflix, you all owe it to yourselves to see Aspergers Are Us, a documentary about the titular comedy troop made up of four people on the spectrum.

The leader of the troop also has a TedX talk (that I haven't watched yet but my wife says is very good) that explains what the life of an autistic person is like.

More people need to see stuff like this. People who aren't Neurotypical deserve to be considered people too.

Thanks for the heads up, DoubtingT! Looks like it's on Netflix France and downloadable too. Yoink!!!

Edit: shame it's all guys. =\

Great NPR article about using improve to help autistics children read emotion and body language.

Using Improv To Help Kids With Autism Show And Read Emotion

In regards to my son who is now 22 months and still not verbal, ABA seems to be making some difference. It's not the drastic improvement I was hoping for when we started it back in August, but I may have been setting myself up expecting too much too fast. His Physical and Occupational therapy are improving through the roof at least.

It's still hard for him to keep eye contact with my wife and I but it's definitely getting better. What hurts me the most as a parent is calling his name and not getting any response or reaction. He just completely ignores it, I know my wife wants that to happen really badly as well. It's hard to connect with him since he is always in his own space bouncing around from toy to toy. Now we have family members and friends who we haven't told "he's autistic" that are starting to dig into that. They would constantly says "Angelo" "Aaaaaangeloooooo" over and over. With that and the hand flapping, when he gets excited people are starting to get suspicious and ask us questions.

We aren't ready to tell people that he's autistic yet because we are still holding out some hope it will break with ABA. Plus he won't be officially diagnosed with it until he turns 3. There are a lot of red flags that can't be ignored but we are just trying to hold on and hope ABA does the trick or at least marginalizes it so he is high function.

To tell the truth, TempestBlayze, you have to be patient. Little tyke isn't even three yet, you're doing early intervention, there isn't much more you can do but nurture your child and give him what you can. He'll find his way.

The fact that ABA is making any difference at 22 months is actually a pretty good sign, IMO. Tristan was still non-verbal at 22 months, and didn't really come out of his shell until he was nearly 3. Now he can be a little chatter box.

As for telling people... not sure what to say there. I told my relatives and his caregivers outright when we got the diagnosis (which was early, he was diagnosed at 18 months). It might be a little different since I'm fairly certain I'm on the high functioning side of the spectrum myself, so I just rolled with it and figured if something changed I'd update them accordingly.

Tristan came up to me the other day as I was telling silly knock knock jokes, and laid this one on me....

Why did the chicken and the turkey cross the road?
I don't know, why did they cross the road?

My son used to like writing jumbles of letters on a page and laugh uproariously at my attempts at "Dad, what does this say?"

Have any of you used Agape vitamins? One of our therapists told us that a lot of parents with autistic children sware by it.

TempestBlayze wrote:

Have any of you used Agape vitamins? One of our therapists told us that a lot of parents with autistic children swear by it.

With my son on the spectrum, I get bombarded with an incredible number of treatments and "cures" - it takes a pretty sharp (Occam's) razor to cut through sales pitches that are being hawked to me/us.

I am not a doctor:

Sounds like snake oil/magic beans, to me. Most recent research shows that vitamin supplements show benefit that only equals placebo effectiveness - in other words... not effective, at all.

Now, if your doctor has diagnosed you with an actual deficiency, then that's an entirely different story (iron and B12, for vegetarians is very common).

Maybe it's real... Maybe it's not... but I know I don't have $60/mo to blow on a placebo. (I have plenty other things to waste my money )

My position on all dietary based autism "cures" is to take them with a big pile of salt.

From what I can tell, most of the improvements people see in the behavior of autistic children comes from alleviating digestive pain that the kid can't describe. It's not so much curing autism as it is making the child not so overloaded. That's a worthy goal, but you have to keep it in perspective, especially when there are still people out there claiming that dosing your child with bleach will cure autism.

Too many buzzwords for my taste. Sounds perfectly crafted to weasel people out of their money. And her biographical information on her own site doesn't make me feel any better about it... From everything I see, my opinion of her (which I admit could be entirely wrong) is that she is likely scum that looks to profit from those of us that just want the best for our kids, many of which are intellectually delayed or disabled. And I don't know where you're getting $60/mo from, it's $97 per bottle and the site mentions that it lasts just over a month. Which for an autistic kid means about a third will be spilled or spit out, so probably closer to 2/3 to 3/4 of a month.

God... the more I look at the site the angrier I'm getting. Agape, Unconditional Love. Agape, Pure Love. Apparently love costs about $3 per ounce.

Well, I *am* a doctor, and honestly, all those supposed cures, those dietary supplements, diets, and other stuff... None of it really works, because there's no scientific basis. It's not evidence based medicine. Some of those don't really do any harm, they're snake oil, but some of it is downright dangerous. Not to mention ludicrously costly.

And really, when you read "gluten, dairy, corn, soy, food dyes, and artificial sweeteners", you wonder what's left. XD

Bullsh*t. That's what's left. I'll stick to my Flintstone vitamins for Tristan.