Autism thread

Eleima wrote:

I haven't been posting much in this thread, because really it feels like there isn't much to update. It's the same stuff, day in, day out, and there seems to be little hope of change at times.

This pretty much describes how I've been feeling.

Some hints of picking things up during our week of intense potty training, but it was pretty hellish. Mainly cause little guy was up from 1-4 am in the hotel each night. Unfortunately there's no way we can keep to the rigorous schedule at home and school and it seems like what he learned is fading quickly. Now he's back to having accidents probably 10+ times a day and few potty successes.

The big issue though is where to move. He's aging out of his autism program. There's all kind of drama and staff turnover going on there now anyway so it's not bad timing. Our school district is not great for special needs though. Our house really isn't ideal for him either.

So we can either move to a better school district in this city which is the simplest move and I'd have more time to help out at home. But I'm not too sure how well equipped they are too teach little guy and I worry about him having Summer off with no structure.

Or we could move to the city where my wife's family is, about 2 hours away. They have an autism-specific day school that seems OK and is affordable. We'd have built in family support and I could keep my current job for now. But a huge commute and I'd be worn out and unhelpful at home. Or living apart on the weekdays.

Or we could pack up everything and move out of state where there's a really top notch autism program. Would insurance cover it though? No way we could afford it otherwise. I'd have to get a new job immediately and we'd have to sell our house here and move. No support at all and I suspect my wife would be extremely depressed (more so than she already is) without any family or friends to talk to when I was at work. I literally wake up in the middle of the night shaking with anxiety when I think about it. But I have no doubt this is his best bet to make the most progress over the longterm.

Right now, wife is leaning toward moving out of state and I don't disagree, but I'm just having a hard time wrapping my head around all the pieces that have to fit together just right for us to pull this off without it being a disaster. So sometimes I think moving near her family is the smarter move.

Guess I do have stuff to post about after all or this wouldn't be so long. Sorry.

I had no idea this thread existed so this is a repost from the parenting thread (thanks Eleima!):

It's becoming apparent that my 16 month old son may autism. It's too early to tell how severe it is but we were accepted into an early intervention program. We hope that the time with all the therapists can mitigate the autism considering how early we caught it. He is now 2 weeks into a five-day week with an OT,PT,Speech and a ABA. I believe he can have this therapy until he starts school.

There is a chance that he is just severely delayed in his developmental skills and has high sensitivity issues. It's still very unclear on how it will turn out. What's the most frustrating to me is that we have to wait 3 months to see a neurologist because they don't have any earlier appointments. I'm not even sure if the neurologist can detect anything.

Frankly, this is a very sad and scary situation. I came into parenthood thinking of all the things my son and I can do together in the future and now all of that is all getting put on the back burner until we can get him to adjust to the world around him. I know that is pretty bleak and I am hoping to have my spirits up as these therapy sessions go on. I love my son to death and I want to see him become independent and take the world by it's throat.

I am going to read this thread throughout the next couple of days to get a better insight on all of this. Expect to hear from me again soon hopefully with some good stories to tell!

I won't tell you it's going to be easy, but there will be bright spots as well as dark. The important thing now is to give up preconceptions and love the child you have, which probably sounds incredibly trite and a little offensive. Or incredibly offensive and a little trite. Either way, I'm sorry about both.

I've met a lot of people who think their kid ceased to be a person when the diagnosis came, and that's about the worst thing you can do. Your child is still the same child. There are sensory processing issues that make life harder for them, but you can help them cope and learn to deal with them. The kid is still aware of you, though, and even if they can't express it they're more observant than you think.

In fact, in my experience, an autistic child is more observant than usual, which is one of the reasons why they have so much trouble coping with the world.

I've mentioned it before, but we've had tremendous progress using the Sonrise program. My daughter was mostly nonverbal until she was three or so. Today she's 9 and we have conversations about videos she likes, or the bunnies that live in our backyard, or about jumping on the trampoline (that last one was a bit of home-therapy that we bought for extra physical therapy, and it's been amazing)

Sonrise sounds a little like snake-oil at first blush (I don't buy that they've "cured" autistic people, but I do believe that they've helped autistic people become able to function in a neurotypical world, which is all that matters) but the core principles (engage with your child, get them to want to engage with you rather than trying to force it) worked wonders for us.

The hardest thing for me to learn was patience. Any time I find myself getting frustrated by a behavior, I try to stop and think about what's really causing it. My mantra is "can't, not won't," meaning that my kids are doing as well as they can with the tools they have. They don't want to have a meltdown, they're overwhelmed by the world. All I can do is help them strengthen the tools they've got and help them not be so overwhelmed.

There are lots of good books to get you on your way and help you deal with things so you can help your child deal with things.

Finally, remember that your child can still have that independence. It just might take longer to get there. And even if they don't, you can at least both do your best together.

Sorry to ramble. I'm not good at emotional stuff, but I hope this was helpful.

DoubtingT's post is excellent, spot on and I have very little to add. Be prepared, as he says, to love your child as they are, not as you hoped they would be. Be prepared that you might have to readjust your expectations.
My eldest will be five in Novemer and is still non verbal, not potty trained. He screeches more often than not. But when he looks at me with that big smile and his twinkling eyes, he doesn't need to say "I love you" for me to know its true.

My eldest loves, loves, loves the sea and pools. But he can't tolerate a hat, much less a bathing cap. Thing is, all public pools here require you to wear one. Anyone have any ideas? The only thing I've thought of is trying to have him put it on at the last possible minute and dunking him in the pool immediately afterwards so that the pleasure of swimming outweighs the discomfort of the cap, but that's my only bright idea. I tried calling the local and explaining the situation, adding that he has very very short hair, but they wouldn't budge.
Any ideas?

Not going to tell you how to feel, or what to expect, because each kid and situation is different. Mourn the loss of a future that you expected but will likely not come to be, but don't dwell on it. After a while you'll find that while things may be more difficult, it's still manageable. Tristan is 4 1/2 years, we're working on potty training (mixed results, but he's to the point where he'll occasionally change his own diaper but still won't use the toilet), but he's way more verbal than he was at 18 months when he got his diagnosis. Three years of therapy really shows for him. I'm even getting braver about taking him out in places, and I've stopped using our stroller because he needs to learn to walk on his own with just holding our hands. We literally just got back from the movies (went to see Kubo), and he did OK just sitting in the seat by himself. We used to use the handicap spots with his stroller just so we could keep him strapped down.

Tristan started ABA therapy at the beginning of June, but our benefits stopped a couple weeks back due to paperwork issues (warning: lots of acronyms/initialisms incoming). Two weeks in to ABA therapy I found out he needed to be enrolled in a program that does the funding (ECHO). ECHO needed paperwork from his EFMP (Exceptional Family Member Prefix) enrollment, which is a DD2792. I immediately set up an appointment for him, but the soonest they had was 8/26. Then I tried calling the clinic to try to get an earlier appointment. They told me to call Tricare. Tricare told me to call Langley's EFMP office as his records should have been transferred there. Langley has no record of him even being enrolled. Then I called Walter Reed's EFMP office (where he was diagnosed and enrolled), and while they had his enrollment as expiring in June of 2017, they didn't have on file a copy of his DD2792... so I'm stuck in bureaucratic hell, and Tristan is missing therapy sessions due to paperwork I didn't know I needed to do until after the window closed. Not one person in his care mentioned anything about ECHO in three years, and the first I heard about them was "Oh, if you don't enroll with us, which normally takes a couple months, we're stopping his therapy in a week".

Here's a few recent pictures from the VA Aquarium and our trip out to Nauticus in Norfolk (using spoiler to keep page loads light):



Thank you Doubtingthomas and Ele I've read through your post multiple times. This stood out to me the most and I memorized it to use daily

The hardest thing for me to learn was patience. Any time I find myself getting frustrated by a behavior, I try to stop and think about what's really causing it. My mantra is "can't, not won't," meaning that my kids are doing as well as they can with the tools they have.

I like that too, and patience is certainly something I need to work on (though, admittedly, more for my oldest than Tristan... he has such severe ADHD that he literally can't sit still without stimulation for more than 4 seconds). My only change to that would be to think of it as "can't yet", based on the tools they have now.

Also, don't see the long wait to see the neurologist as a bad thing. That appointment is really the least necessary thing for your son right now (mostly just part of the bureaucracy, at least it was for us). The really important stuff, the therapy, you've already got in place. You'll also be able to go into the appointment with more information, because your therapists will pick up on more than you will.

PurEvil wrote:

I like that too, and patience is certainly something I need to work on (though, admittedly, more for my oldest than Tristan... he has such severe ADHD that he literally can't sit still without stimulation for more than 4 seconds). My only change to that would be to think of it as "can't yet", based on the tools they have now.

Also, don't see the long wait to see the neurologist as a bad thing. That appointment is really the least necessary thing for your son right now (mostly just part of the bureaucracy, at least it was for us). The really important stuff, the therapy, you've already got in place. You'll also be able to go into the appointment with more information, because your therapists will pick up on more than you will.

Agree agree agree, especially the "can't yet" part.

I also second the neurology wait advice. In some countries they won't even attempt a diagnosis like this until the kid is seven or eight, based on how neuroplasticity manifests in early years.

One last thing I'll add to my thoughts above: the most important thing you can do with your child is build trust. There are a lot of things that seem physically painful to a child with sensory processing disorders, which are a big part of Autism. You must, must, must do your best to avoid causing that kind of pain in the name of making the kid "act more normal." There was a dark patch we went through several years ago where we tried to force some things, and that is still remembered today. We've earned back a lot of trust, but sometimes we still catch glimpses of our oldest being skittish because she's afraid it will happen again. We just keep reassuring her that we won't let anybody make her that uncomfortable without a damn good reason, and the trust has been building again, but it's easier to maintain trust than to rebuild it.

That's my best advice for day to day life, and especially for selecting a therapist. Whatever sort of therapy you go for, sure the therapist is okay with you sitting in on sessions., and don't let them do anything that makes you uncomfortable. Of course you want to to stretch and grow your child, but make sure to pay attention to how your child is responding.

My wife ran across this and I thought it was too good to not share.

Warning: cursing at the link.

I'll quote some choice bits:

Recently, a parenting article has been going around the interwebs and popping up on my Facebook feed. The article talks about all the ways that some parents coddle and make their children into “brats” by horrible, abusive things such as “wanting them to be happy” and “asking them what they want for dinner.”

So, first I want to address the inherent ableism in this article. Because it is incredibly ableist to assume that all children have the same physical, developmental and cognitive abilities and executive functioning skills that this list seems to assume that they do. Secondly, parenting is not us versus them. People who have that mentality are going to think that kids are “brats” because they don’t see children as actual people with thoughts, feelings, needs and desires, preferences and wants of their own. And guess what? Children have all those things just like adults do. On top of that, they do not have the skills and knowledge to always communicate those thoughts the way that adults do. If they did, THEY WOULD NOT NEED PARENTS.

Emphasis in original.

This gets to the heart of a lot of misunderstandings I have with people about my kids. I'm not spoiling them by respecting their needs.

I want them to communicate what they want from me because communication is hard for them. My kids are not going to try and talk to me if they think I'm going to treat them like spoiled brats whenever they ask for things.

This isn't the same as giving them everything they want, but it does mean that I try to treat them like the most important person in the world when they're trying to communicate with me. Because you get more of the behavior you reward.

It's been my parenting philosophy to remember that my kids are people too, and just because they have a hard time with things doesn't change that.

Anyway, read the whole thing if you get time. I think the author really hits the nail on the head on most of the points.

Guess I can pipe in, has been a long time. Owen is just doing incredible, started Senior Kindergarten this week and he's doing fantastic. Very little if any support from the EA's, he's reading, writing, doing math and has tons of great friends.

He really struggles when he's in a group environment, he seems to have trouble listening to instructions when there is a lot going on. This year we seem to have a teacher who is experienced and very receptive, she is following our suggestions so far.

Whenever I tell someone who doesn't know Owen, that he is Autistic they can't believe it. I fully believe it was because we advocated for him and got him help early (paying private), and persevered to get him into IBI.

I'm a firm believer in ABA and IBI, Owen is living proof it works.. but the parents have to continue it at home.

El P, I'm very happy for Owen, that he's doing so well. But have a care when saying that last paragraph of yours. For the last two years, we've been pouring thousands of euros into ABA and we, as parents, have been fully committed to the method. My husband stopped working to implement it full time when we couldn't find decent services.
And yet my son is almost five, non verbal, not potty trained, and can barely draw a circle.

It isn't a "one size fits all" method, and sometimes it won't work, despite your best efforts.

I'll second Eleima's comment. We had our daughter in ABA therapy for about a year, during which time she got noticeably worse from a communications and behavior standpoint. My wife is homeschooling both of our kids, so it wasn't from lack of pervasive care.

We've since pulled her out and have been taking a more Sonrise approach, and the results are nigh-and-day.

I think the best advice for parents of autistic kids, when it comes to therapy, is to keep an open mind about methods. If you find a therapy that works, great! Keep at it! But if a therapy isn't working, don't keep doing it blindly just because the person you are paying to do it says to keep it up. Explore as many options as you can, read up on it. Above all respect that your child is a person and not a diagnosis, and that they have the same needs, wants and wishes as other people, just a harder time expressing them in ways you understand.

That said, I'm super happy for Owen, El-Producto. It's a great feeling when communicating with your kids gets easier.

You said a lot better than I did, DoubtingT (and probably less terser, posting from your phone is *hard*).
There's a definitely lack of solid studies in this area, because it's just so freaking hard to do "good science" with comparable groups, control groups, it's just too complicated from a logistical, methodological and ethical standpoint. However, ABA has shown to help some children on the spectrum. So if it works, that's awesome! But it doesn't always work, unfortunately. If there was a miracle method (not cure), we'd know about it by now. The thing, the spectrum is such a complicated thing. It's called neurodiversity for a reason, the clinical presentations can vary incredibly wildly. And the responses must vary accordingly.

Again, though, super happy Owen is thriving. That's what's most important.

From what I've seen of ABA, it's really good at reinforcing and building on behaviors, but communication was a big key for us. If Tristan had still been non-verbal, I'm not sure he would have taken to it so well. I finally got our insurance to pay for it again, right as school was starting. The therapist we have only works during school hours, and wants five 2-hour sessions per week, and the school doesn't want to give up any of his educational time, so I feel like I'm caught in the middle.

I did have a moment this past weekend that caught me off guard, and figured I'd share. We were at a CPO family picnic. They had bouncy houses, games, food, music, and there were a lot of people around. Tristan did OK around people, but mostly stayed in the bouncy houses. He pushed himself way beyond overheated, kept asking for water even after we gave him some, but then would jump right back into it. I told my wife I was taking him to the car to cool down in the AC. He walked with me fine, and I told him what we were doing, and once we got in the car and the cold air hit him he said, "Thanks daddy for taking me to the car and cooling me down with the air conditioner." He even spoke a lot of the words better than he normally does.

That tracks with our experience as well. We've seen a lot of growth following physical activities, so much so that we bought a playscape and a trampoline for the back yard so we could do lots of rigorous, physical therapy on our own. Physical and occupational therapy has been our bread and butter.

They're just full of energy and they don't know how to express it, but when we do sensory play they seem better able to cope with things that would otherwise be difficult for them.

Incidentally, do you have any sensory gyms nearby? We have one within driving distance that has lots of sensory toys, balance beams, swings, spinners and ball pits for kids with sensory processing difficulties. They even have a quiet play room with dim lights and soft toys for when kids get overwhelmed.

It's not cheap, but our kids love the place. If there's one best you, I can't recommend it enough.

I'm only seeing one nearby, and they literally shut down permanently two weeks ago.

PurEvil wrote:

I'm only seeing one nearby, and they literally shut down permanently two weeks ago.

That is a shame. The one near us runs on donations.

I'll have to throw some money in their tip jar this weekend.

Sorry folks, I didn't mean to suggest that it was the solution, but it worked so well for us and we saw meteoric changes once we understood how to help our guy. He went from non-verbal at 2.5 years old, to a kid that never shuts up and has an incredible vocabulary even compared to his peers.

We had good therapists, who Owen responded well to which may have helped.

Eleima wrote:

However, ABA has shown to help some children on the spectrum. So if it works, that's awesome! But it doesn't always work, unfortunately.

And to further complicate things, there are a lot of kids who are non-verbal at 2 who go on to make dramatic, quick progress without ever receiving any ABA.

In our case, I'd say ABA seems to work, but the pace is glacial. Like it takes my son years to learn what other kids learn in weeks or even days. Also it seems like he loses skills almost as fast as he gains them, so it feels a bit like trying to slowly fill a bucket but there's also a hole in the bottom.

So with potty training coming along (somewhat), I've been taking Matt to the bathroom when we're out and about. And my poor, sweet boy is absolutely terrified of hand driers. As in start screeching and crying.
Things is, that's pretty much your only option in public bathrooms these days it seems.
Anyone have any ideas? Aside from carrying wads of paper towels in your handbag, of course.

Eleima wrote:

So with potty training coming along (somewhat), I've been taking Matt to the bathroom when we're out and about. And my poor, sweet boy is absolutely terrified of hand driers. As in start screeching and crying.
Things is, that's pretty much your only option in public bathrooms these days it seems.
Anyone have any ideas? Aside from carrying wads of paper towels in your handbag, of course. :D

Do you have headphones? Those helped us a lot when it came to noisy environments.

For my kids it wasn't so much the sound as the suddenness of the sound and the lack of control over when the sound happened. Is there a way you can (gently) encourage him to activate the dryer himself? Make sure he's aware that performing X action (whether it's pushing the button or waving his hands under the nozzle) will turn on the noise, then let him do it when he's ready. It worked for my son.

Also, I'll put in another plug for ILS or some other kind of sound therapy. We did the sensory module for it, and it really helped both kids with some sensory sensitivies. The downside is that it isn't cheap, and requires several weeks of dedicated application.

PS: Don't worry too much about the exercises that go with the sound therapy. They're good exercises, but if your kid doesn't like doing them you're not going to see any benefits from forcing the issue. It will just turn the whole thing into a rigmarole where nobody's happy. We did some of the exercises, but as long as they were doing something with fine motor skills we saw benefits.

One word of caution, though; halfway through the therapy module you may see some behavior issues, or the problem that the therapy is trying to fix may seem to get a little worse. That's normal. It's important to finish it once you commit to doing it, otherwise you won't see any benefit at all.

I'll have to give headphones a go. I always imagined that he wouldn't abide them it I thought the same of the mandatory bath cap for public pools, and was proven wrong when the desire to swim outweigh the discomfort of the cap.

Will have to look into ILS, that's something I have very little knowledge of. Thanks DoubtingT!

Baby steps.

Is he also afraid of hair driers at home? Maybe you could use one of those to help him get used to it? My son seems to like the way they feel, blowing on his skin. But he's overly sensory seeking and almost never sensory aversive, so...

Headphones would just end up in our son's mouth unfortunately. We have numerous sets all over the floor that we have relinquished to him after they broke because he's just so compelled to chew on them.

Wife called me up crying today. She doesn't think the new school our son is going to will work out. He just started there 3 weeks ago. It's in a different city and I've taken a new job and we're trying to sell our house and have leased a new apartment to go there. I just feel so overwhelmed, hopeless and don't know what to do.

She has a bunch of issues she's upset with, but probably the most egregious is that for two days in a row he's come home with new bruises on his legs and we have no idea why. Minimal communication from the school. We don't suspect he's being abused; he's probably just falling or something. It's not like he doesn't do this kind of thing at home. But it feels so helpless to have no idea exactly what's going on with him since he can't speak or communicate beyond an infant level. So now I'm wondering if we need to move again, but the consequences of that would be pretty high with my employer and our financial situation. I also worry he'd just wind up in an even worse place.

I really wonder. How much of the school situation is just par for the course? Something we're just going to have to learn to live with and struggle through? I think we've been spoiled by how attentive his former program was, but he's aged out of it. It was also costing an unsustainable amount of money anyway. And as little communication and oversight we have over the school, what's it going to be like with a group home? I try to avoid thinking about it, but sometimes it pops into my mind and I start panicking or crying myself.

It probably doesn't help anyone's mood that he's been waking up around 2 am each night for the past week or so and we're sleep deprived.

To top things off, I just got a text from wife saying that he had been licking bird poop at the park when she took her eyes off him for a second. She's utterly paranoid he'll get some kind of exotic disease. I wish I knew how to reassure her or how to fix things so she wouldn't worry or be depressed so much, but it seems like all my efforts just fail at best, or make her angry with me at worst. Makes me feel like a failure as a husband and a parent.

The only thing I can think to do (as far as the school is concerned) is to talk with the teacher, and ask them to communicate better. Tristan started school again a few weeks back, he's in an inclusion class, and I've already gotten a call about an extremely minor injury. Another kid was playing with the toy and accidentally hit him in the cheek with it. No bruise, no blood, he cried a little then was fine. I still got a phone call about 15 minutes after it happened. I shrugged it off, he's rougher than that with his brother, but I was happy I got the call.

Realistically, injuries should be documented in some fashion, and it's not acceptable that you're left wondering what's going on. Dropping the school might be a bit drastic as a first step, try to work with them first.

I realize this isn't a viable option for many, but we've had phenomenal results with homeschooling our kids. To the point where the local school we were getting speech and OT from encouraged us to continue with it. It sounds daunting until you realize that a) you are not obligated to maintain the school's schedule, b) you can focus specifically on the areas where your child is weak in a way that a formal classroom environment could not, c) realistically, classrooms only achieve about two hours of productive learning on any given day (I'm trying to find the study I read this in) so if you can beat that you can feel good about letting the kids have more downtime than they'd get at school, meaning fewer meltdowns and more learning.

As for the bird poop thing: have you heard of chewables? They make chewable jewelry for older kids with sensory-seeking tendencies. My daughter still has a tendency to put things in her mouth when she's feeling overwhelmed. At one point she was sucking on Legos, which worried us, so we found some chewable rubber Lego shapes. Now if we see her putting things in her mouth, we can redirect her to something safe to chew.

More generally, we set up some sensory-play items. My wife dyed some long-grain rice multiple colors and put it in a bin for the kids to play with. It's safe, non-toxic, and it made a huge difference for my son, who is a seeker. Remember that scene in Amelie when she liked putting her hands in barrels of grain? It's like that. You can also do it with various dried pasta shapes.

Play-doh and kinetic sand are also great sensory play toys, but you might want to make your own play doh if you're worried about oral fixations, and the sand can get messy and is harder to clean than the rice.

You're not a failure, Gewy, you're just doing the best you can, and that's all anyone can hope for. PurE has the right of it, I'd see if the school couldn't be receptive to certain adjustments, I don't know. My eldest isn't verbal either so we rely on passing notes back and forth in a little notebook so his school and we know what's going on.
Hang in there.

Our son also recently had new smallish bruises on his legs. My wife was mildly upset as she worked as a preschool teacher and she swears it was always documented. I told her to email the teacher, but I don't think she did.

For me personally I can't expect that every little slip can be documented, and it was hard for me to be sure he even got them at school. I expect bruises on a moderately clumsy preschooler. Black eyes and cuts and scrapes I certainly expect a communication about.

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. It probably doesn't help that a sort of friend of hers moved across the country to go to a world-renowned ABA program and every time she posts something on Facebook it's always so positive.

Thanks for the suggestions in general. We have probably a dozen different types of chewies for him to wear and he does use them, but it doesn't prevent him from seeking other things out to stim with. He especially likes chewing on cables. As bad as destroying all our headphones is, it's still better than his chewing on power cords... Scary. We've done the rice and stuff and it's just too messy. He also likes biting fences and shopping carts. No doubt where he has picked up some of his GI bugs in the past.

As for homeschooling, it's just not an option. My wife would end up in a psychiatric unit or worse if she tried to do it. So would I for that matter. Hate to say it, but I imagine a big part of the joy of teaching is the satisfaction of seeing progress and that is totally missing. I mean at 5, they're still working on getting him to stack 2 blocks together. I'm not even talking about Lego either but the big wooden cube boxes that babies play with. How many years can you keep doing the same things without getting bored. Not to say they haven't tried all kind of different stuff with him... The pros just seem so flummoxed. I'm already sensing a pattern where someone new starts working with him and they're all optimistic since he seems so cute and smiley and curious about the world. Then after a while it's like they run out of ideas and their expectations dwindle.