Autism thread

I read about this in my Twitter feed. It's absolutely horrifying. My kids are still young enough that people will roll their eyes and just say we're incompetent parents who can't control tantrums and/or discipline their kids. But still, I worry that this is something that could happen to me. I do feel that US airlines are a lot more touchy than other airlines I've flown on, though.
It's also horrifying to see how horrible service on US domestic flights have gotten since I last flew in the US over 5 years ago. Now you can't even get a hot meal?!? Astounding, and just disconcerting on so many levels, I can't even begin to deconstruct everything that's wrong there.

My wife and I are taking a cruise in August, and we have to put our boys on planes to and from the port. With our issues, I'll admit that my anxiety is already ramping up. I figure maybe if I can have a couple tablets ready to go, with movies they can watch, and get them accustomed to using headphones, it might not be so bad. But I could see a meltdown happening with Tristan if the pressure starts getting to him. Or if Sabastian starts getting really bored.

Minor air travel-related vent incoming.

Sitting still for long periods is torture for my son. The car isn't as bad since he at least has the visual stimulation of movement, but right now, I think a flight would just be mean to him. Even in the car, if it's longer than 15-20 minutes, he'll start screaming. I've told my family I'm not sure I'll ever take a flight again and they just kind of roll their eyes like I'm being too negative and worry too much (which I guess must be a longstanding trait of mine or something). Then my dad starts talking about getting remarried in Hawaii later this year and inviting us to go there for the wedding. Ugh, WTF, dad? That's like a 12 hour flight or something. He acted surprised that we wouldn't be able to make it. Wish people would take my wife and me seriously when we talk about our son's issues. I think they're kind of living in denial for their own convenience.

As the father of two children with sensory processing issues that result in what other people call "picky eaters" I was tempted to post that story myself.

What bugged me the most about that story was that the pilot freaked out at the potential for a meltdown, without any apparent evidence of one. From the account I read, the crisis was averted when the mother explained the situation and got the meal for her daughter.

I don't know how my kids would react in a plane. They'd probably surprise me in a good way, because they can be awesome like that, but I still don't want to risk it. Heck, I don't even like flying if there are no kids involved. I've done it twice, and you can keep it.

In other news, we set up my old laptop in the living room so my daughter could do schoolwork. Afterward, we let her search for YouTube videos. She likes to watch cartoons with the sound muted so she can make up sounds on her own. When she's done she talks about it to my wife or my son or me. Her communication has been going through the roof lately.

We've seen similar results when she gets a new iPod app or a new video game (she beat The Unfinished Swan all by herself last week. Proud father right here). I'll never let anyone tell me that technology is bad for a child's development.

I've just spent an hour cleaning poop out of my quilt and my parents' silk carpet. And it's only 8am. SIGH. The eldest thought it'd be a good idea to strip, remove his diaper and poop in his brother's room. All this while we were in the kitchen having breakfast and feeding the youngest.
If this isn't "FML" worthy, I give up.

Well, we had our appointment with the orthodontist - assessing my son for braces. He started to "lose his sh*t" when the ortho mentioned that he may require reconstructive surgery if his thumb-sucking (he called it a "digit habit") didn't stop before he stopped growing, and his skull/jaw became "fully set."

I've been trying to get him to stop for YEARS! He's always been a voracious thumb-sucker - if I'd point it out, he'd either try to hide it, or he'd just go somewhere I wasn't, to continue. He, therefore, has significant dental deformity because of the habit.

Well, he's "changed his tune" now. It's only been 2 nights, but he's worn the glove at bed time, and it's still been on in the morning. YAY! I don't think he'll give me such a hard time, putting it on, when he plays games, anymore. Double YAY!

Here's hoping that he'll shed this habit, for good, and we can still succeed with braces! Time will tell if it gets replaced with something else/worse, or if it affects his moods too much - taking away one of his "self-soothing" habits.

Fingers crossed.

We had the IEP kindergarten transition yesterday. Alex will be getting full-day support from a paraeducator, and pull-out support for speech and behavior. He is more than ready for kindergarten academically. He's also more disruptive than anyone had told me: he interrupts, lies down on the floor, or just says no, an average of 20x per half-day session. The rest of the children might do that once. I am not happy I just learned that yesterday, even though I'd kept up a communication notebook with his teacher. He's really come a long way, but he's still working on a lot of things. We also are requesting bus transportation even though he's not even a mile away from his new school, due to his earlier escape attempt. I suspect we will get it.

Eleima - been there. hoping it gets better.

WntG - it's so hard to know why kids decide to do what they do, isn't it? Good news.

It seems like this day would never come, but Owen is about 90% toilet trained both bowels and bladder. We resorted to buying him a new Thomas or Hot Wheels every time he had a BM in the toilet, and amazingly enough it's working. He has the occasional accident, mostly when his bowels are loose but he's doing well. It's costing us an arm and a leg, but after a year and a half of trying something that is working this well has got to stay.

If it's any consolation, we did the same thing with littlest pet shop toys, until eventually our daughter was going on her own and we were left with boxes of the things in the basement that we used as stocking stuffers for two years.

Also, BJ's memberships are your friends. They tend to have bundles of small toys in large packages for a lot less than you'd find at a regular toy store.

Wink, I'm glad that the orthodontist appointment went well and that the "scare him straight" technique seems to be working! I know it did for me, I clearly remember my 4th grade teacher telling us that chewing gum would cause holes in your stomach - ulcers. I haven't chewed a single stick of gum since then. So no relapses? Hopefully not! And hopefully, it wasn't replaced with anything else.

Concentric, I'm sorry to hear that Alex has been more disruptive than initially expected. Hope the full-day support helps. And thank you for your kind words.

Congrats to Owen on being almost toilet trained! That's so awesome, you must thrilled, El P!!

Not much is new on my end. Same old, same old. Feels like I'll forever be stuck in this limbo of little to no progress. It's pretty awful of me, but my aunt and uncle were complaining about their teenage daughter and I just felt zero compassion. If my sons ever reach that phase, I'll be ecstatic.

We just (April) got my 4 years old son into an Early Childhood Development program and put on IEP. He is not diagnosed yet, but it looks like he sensory issues. He has major anxiety about sweaty people, kisses, etc, and is extremely bothered by loud noises. He also has a tendency to have what look to be involuntary half-flapping sessions when he gets over stimulated. He can pull out of it by someone talking to him, but it is very concerning. All of this started after he was 3, and just breaks my heart.

He did very well in the weeks he spent in the classroom, and we have a specialized therapy plan in place. He seems to do fine while he is engaged, but has trouble when his mind is free to wander.

It gives me some comfort that he graded well on the cognitive portions of his assessment, and I am hopeful that development of his motor skills will help him control his emotions and anxiety.

Welcome, Gizmo. I'm sorry to see you here, but welcome nevertheless. I hope the IEP helps and that things move forward for your son. You say all this started after he was three, does that mean he's verbal?

Yes, he is verbal, and social when he is with people he is comfortable with. In this context, I guess that makes us lucky, but you just want them to have every opportunity in life.

Owen had his dental work done, and it went really well. Everyone from the anethetist to the dentist, to the nurse that snuggled him while he woke up were fantastic.

Bad news is, he has 4 cavities and a silver cap. We are chalking it up to struggles early on when we had a lot of trouble cleaning his teeth. The dentist did remark that we are doing a good job because he has very little plaque on his teeth.

He also let us cut his hair finally.. no more 1.5 hour trips to the kids haircut place!

I'm glad things went well for Owen at the dentist, even if there were a few cavities to contend with. Try not to beat yourself up, you're doing your best. And even people with the best brushing a sometimes get cavities, that's just the way things go.
As for the hair cut, it's good that you manage on your own. We do it ourselves as well. If we're going to have an epic meltdown every time we gets his hair done, it might as well be at home.

Tristan recently had his hair cut on his own (IE, without being on one of our laps), which was a pleasant surprise, considering this time last year we were still fighting epic meltdowns over haircuts. I need to get him into the dentist, but we're pretty good about brushing with him, and he only fights occasionally.

We went to see fireworks last night, and for a good 4 minutes straight every time one was launched he'd yell FIRE!! with both arms in the air. I'm sure it was annoying people around us, but I was just trying to restrain myself. Both boys seemed to really enjoy it, so I'm glad we got out there.

Before that my wife took the boys to a museum in DC that's doing this "At the Beach" exhibit where you pay to get in, and it's essentially a humongous ball pit. I present, shark Tristan!

IMAGE(http://i.imgur.com/KzRrirY.png)

Gizmo: Honestly, that sounds a lot like how I was as a kid. In fact, that's not too far off from how I am as an adult. Not trying to downplay it, but considering it took this long to recognize some of the signs, it sounds like he'll be pretty high functioning for being on the spectrum.

PurEvil: That is how it sounds to me as well. He is verbal, and when he is engaged, he doesn't display any of the tendencies. I think if he can learn to channel whatever leads him to flap, he will be fine. I just don't want him to be labeled or picked on.

Thanks for taking the time to read and respond.

Right there with you on that. I think the only reason I wasn't picked on (for the most part, it happened here and there but incredibly rare) is because I'm 6' tall and in high school I had no neck. I've never actually been in a fight in my life, because I was just flat out bigger (taller and more muscular) than most people around me. The only time I remember being picked on was for being so robotic in my speech and movements ("Look! He's like a robot! hahahaha), which really struck a chord when I was looking at the diagnostic info for Asperger's.

Tristan was non-verbal when he was diagnosed, and that was at 18 months. His vocabulary really exploded after he started services, but he's still hard to understand at times. Which is kind of weird, because when he doesn't want something he'll say "No thanks" perfectly, then mumble a lot of words together and we're left wondering what he's saying.

I am just sensitive to that effect because I caught a lot of flack for having a seizure disorder. It wasn't bad enough to keep me from extra-curriculars (outside of football), which kept me in the circle of people who think falling down involuntarily is funny.

I want him to have the opportunity to choose whatever activities call to him, but there are some where being 'different' can make it unnecessarily painful. I am really hopeful that self-awareness, combined with increased comfort in social situations from frankly, being in more social situations, will let him make the connections to manage whatever it is he is dealing with.

I was recognized as having ADD late in life. The medication from the seizures actually tempered it in my teens and through most of college. That, combined with relative ease of learning kept me under the radar, but my 20's were an interesting time after I went off the medication. Being made aware of it has allowed me to make process adjustments which were probably past due. I don't know if that will prove to be a fair parallel, but I am hopeful.

Gizmo, to be fair, kids are merciless. Those who tease will find any excuse to, regardless. There isn't much to be done when they weren't raised right. I was teased. I was bullied. You always are when you're different, and it takes time to learn that it's because others just don't know any better. Odds are your son will be too, sad as it is. Your job is to be there when it does happen, and to have words to help him through it.

So this week, my little one is being evaluated. We're about halfway through it, and it's pretty much confirming what I've been certain of for a while now as I've said in this thread. So now my husband is most definitely outnumbered, three to one. Yup, I've got two on the spectrum, two for the price of one, oh joy. And still no response for my eldest from the government services on this stupid paper we're supposed to have before we can even get on a waiting list. It's infuriating. I'm hopeful that we'll be able to make things move faster for my other son, since he's only 16 months and I'm going to make sure that all the papers are in order to send in Friday.
Don't get me wrong, I love my kids, but sometimes I really wonder what possessed me to have them in the first place. Never mind, I know the answer, it was my husband's idea of a perfect family.

That is tough Eleima, thankfully for your little one you have some tools to get things going early.

My wife is really finding it tough, she wants another child so badly. I have 2 teenagers from a previous marriage, who are totally neurotypical. I'm terrified to have another child that would be on the spectrum.. our house is so insanely busy I'm not sure our marriage could handle it. It seems like the incidences of having another child on the spectrum is very high. I also feel so fortunate that Owen is so high functioning, having another child that may not be terrifies me.

Sounds so callous when I say it, but it's a real struggle.

Sidenote, I watched a documentary on Netflix about Child Golfers called The Short Game, and one of the children is autistic. His golfing skill is incredible!

This is probably completely unwanted and unwelcome advice, El P, but... yeah, don't. I'm with you. I certainly as heck wish I hadn't given in to my husband. And I have heard him say in the past, when we got the diagnosis for #1 and before we even knew that #2 was also on the spectrum, that he wouldn't have gone for a second child had he known about #1 being on the spectrum. As it is, I have no idea how we're going to keep paying for services for #1, let alone for #2, and it's looking like #1 is low functioning, given the slow crawl of virtually non existent progress he's making. And our marriage is pretty much only in name now. I really feel as if the only thing my husband and now ever talk about or do together revolves around the children.
I get what she's feeling, but I wouldn't tempt fate in your shoes. Heck, if you sound callous, then I probably sound utterly heartless.

So um, yeah, we got confirmation on Friday that #2 is likely on the spectrum (they won't give us a clear cut answer since he's so young, but they won't shy away from pointing out all the fields in which he's falling behind). My husband who was still holding on to the shreds of hope he had left that our second son would be neurotypical is not taking it well, and is shutting down and shutting me out.
And yeah, I'm kinda bitter about the whole thing, sorry about that.

My wife was pushing to get me to commit to a third kid for a while now. She wants a daughter, and I can't say I blame her. She's completely outnumbered, the only female in the house. However, I stuck to my guns, and after the hell she's been through this week, she admitted there was no way she could handle another. Things escalate far too quickly to control when you have one kid with extremely poor impulse control and ADHD, and an autistic sibling that feeds off that energy and gets worked up so much that he literally can't be controlled. Sabastian broke his window Friday night, and I got to come home to pulling out some leather gloves and still cutting myself to all hell cleaning it up. Saturday they got her so distracted, while fighting and tipping the stroller over, that someone stole her cell phone (new S6 Edge), which also had her credit card and military ID in it's case. We got her a new ID, her new card was overnighted and should be here today, and she'll get a new phone (for the low cost of a $200 deductible) sometime in the next week. The window will be about another $200.

I just worked two 100 hour weeks back to back, and now we're broke.

Oh wow, PurEvil. I hope Sebastien didn't get hurt when he broke it, that must've been scary.

Well, we have now officially entered the poop smearing phase. Three times in the last week. God help us all. It's really hard to clean someone off and restrain them from making additional mess at the same time. Especially when the poop gets on you and various surfaces everywhere.

Would kill to know for sure that he'll be potty trained eventually. We'll probably be starting up some intensive potty training effort after the new school year starts.

Not sure what to say right now, kind of in shock. We decided to take the boys out for breakfast this morning at Eggspectations. It's a little pricey, but really good. The boys were being pretty good this morning so I was hoping things would go well.

We get there, and my wife had to hit the restroom. While in there, Tristan started "playing" with the little creamer bottle they keep on the table for coffee, and I took it from him to keep him from pouring it in the floor. Meltdown starts, and he starts trying to get out of the high chair. So... I walk over, ask him to sit down so I can do the straps, and when that fails I hold him down and do the straps.

Now we're in epic meltdown mode. Screaming, trying to scratch me, fighting the chair, and anything within reach is offending him by not being in the floor.

Wife is still in the restroom, no sign of returning soon. I've got both boys, and Sabastian was being pretty good at the time. I... just didn't have any options besides letting him wear himself out in the middle of Sunday breakfast rush in a crowded restaurant. My anxiety is through the freakin' roof, people are staring and giving me dirty looks. At this point I just wanted to crawl up in a corner, but I just sat there, calmly with my hand on his back, trying not to work him up further.

Wife finally comes out, asks what happened because she could hear him from the restroom. She takes him to the bathroom and stands him in the corner for a few minutes, and tells him his behavior is unacceptable. They come back, he's calm as a cucumber, and starts eating the fruit he was trying to assault me with 10 minutes earlier.

About 20 minutes later a woman walks up and commends me for how I handled it, and told me that I was a good dad for just not engaging and letting him tire himself out. My wife and her chatted for a few minutes, talking about how meltdowns are with Tristan due to being autistic, and she said she was already impressed, but it was good to see such caring parents, and that they boys were lucky and we should make sure to bring them out more often because they should experience good meals like that.

I hate to admit this, but a lot of it was hard to take in simply because she had her hand on my back. I'm... a little weird about being touched, so it shot my anxiety right back up, but I can control how I appear on the outside so I made sure not to show it. I thought she was really nice, and it helped to hear someone felt I did the right thing, considering the death stares I was still getting from the group next to us (all adults, probably youngest being in his 50's).

We finish up eating, and I take Tristan to the car before the check comes. Mostly to get the car cooled down, but partly just to give myself plenty of time in case he starts fighting again. By the time I get to the car, my wife and Sabastian are walking out. That was freakin' fast.

Not fast, the lady paid our bill. She told the staff to ring it on her card, and if we ordered anything else, to run her card again. Even left a tip for our waiter and told him to take care of us. It just floored both of us.

Wow!

I'm appalled that there are people that "give the dirty look" at parents of children in meltdown mode - they must never have had children, or just be the "I don't like kids" types. Any parent, past or present, has had their child go into full-on, flop-on-the-ground (regardless of how dirty that ground is), thrashing tantrum mode at least once! If they haven't, then they must have some sort of "Stepford child", alien, or android.

I give them the "been there" smile. You're not alone, and it sounds like you handled it with grace.

I applaud!

Gewy, I'm sorry to hear that he's still at it, and I really hope the potty training works. You have my sympathies, for what it's worth.

PurEvil, I have to admit that I was a bit scared something really drastic and bad had happened from reading your first sentence. I'm glad that it was an act of human kindness instead. Congrats on handling it all so well, though.

And to be fair, Wink, I used to be one of those people who looked askance at kids throwing tantrums in public places. I was young and stupid and didn't know any better. Now I just try and give the parents my most sympathy-filled look, because good grief, do I know what it's like.

"Appalled" was probably too strong a word, but PE did say they looked 50ish, so how they managed to get that far and have (what seems to be) no idea what children are (can be) like, is what bother eyed me.

I've had to, nearly, full-on tackle, and drag by the wrist, my son as his tantrum was sending him running blindly into traffic. Talk about "heart in your throat" panic moments.

Purevil, I've been there with the dirty looks. Once my daughter had a meltdown in a Walmart while my wife was getting a shopping cart. I was afraid someone was going to call the cops on me.

People can be ignorant jerks sometimes. My wife saw a facebook post where parents had a bumper sticker on their car warning EMT personnel that there may be an autistic child on board who won't be able to respond to questions. Someone defaced the sticker with address-label sized stickers with the word "Spoiled Brat" printed on them.

Two questions:

1) Who the hell carries around printed address labels with "spoiled brat" printed on them?
2) What the hell in general?