Autism thread

Yeah, bedtime is hard, it's exhausting, and it's cutting into adult time, which I honestly have to say has been very complicated to deal with. For starters, Matt didn't sleep through the night until he hit 13 or 14 months, and my husband basically said "he's gonna cry it out" (he'd go to bed okay, but wake around 3-4am to nurse). After a couple of days, we finally got a 7pm-6am schedule (which is okay for us, since this is the tropics, sun and pretty much everyone is up at 6am here). But around 2, Matt started resisting bedtime. And although he doesn't wake in the middle of night (at least most of the time, we do get the occasional nightmare with him slipping into our bed, but it's rare), it's exhausting. And like I said, us parents haven't spent an evening together in forever.
We're trying to stick to a routine and explaining things, since I've read up about this kind of thing. Like you said, PurEvil, the explaining works well with NT kids too: in five minutes, we're going to brush our teeth, in two minutes, we'll turn off the lights, etc. I've half a mind to try melatonin, but the pediatrician looked skeptical, and hubby doesn't seem too excited at the thought. We don't get fits thankfully, but he'll keeping rolling out of bed, wandering into the living room, and it'll start all over again. So one of us usually has to stay with him until he falls asleep. What we tried last night, and what I've been advocating for a while is just putting him back in bed, giving him a kiss, and just doing it over and over again. Last night, he did end up falling asleep on his own, but it was 10:30pm by the time, and we were turning in ourselves. I'm thinking that this might be time consuming, but maybe it'll work. Thoughts?
At least the four month old baby is sleeping through the night now, right?

On our end of things, hubby's giving this a lot of thought, particularly since he was so disappointed and worked up after the "useless" pediatrician appointment (his words). We're pretty much ready to do whatever it takes if we can't get help for him. I'm not familiar with the system here in France, so we're asking around, getting a feel of how things works. I mean, I know the system, just not how they do things in these cases. We won't rule out moving to another region or even another country (Canada came up as a potential option) if need be. Thankfully, we have some money set aside, and my parents are even ready to chip in.

I'm sorry you're going through that, Eleima. Dealing with a child who needs aid, post-partum depression, and the seeming inefficiency of the systems that you need access to to get your child help must make you feel like you're about to collapse under the weight of it all. So don't apologize about walls of texts here. We've all had our moments in this thread.

PurEvil wrote:

Another thing is that you should verbalize what's the next step on the routine, and give specific timeframes for when it's going to happen. Stuff like "in a few minutes, we're going to have a bath". Then during the bath, "after we're done with bathtime I'll get you in your pajamas and lay you down for bed". You might get some fight, but you're setting the expectation early that those things will happen next. This helps even with NT toddlers, so it's worth trying to get into doing this regularly, if you don't already.

This is huge. If you get nothing else from this thread, Eleima, take away the process of painting a picture for Matt of what will be happening that day but in small chunks.

Early in the morning, tell him about the doctors visit in the simplest terms possible. Refresh his memory again about an hour before. And then when you're on the way there, refresh his memory again. Routines and preparing children for routines or new experiences goes a long way to diminishing or outright avoiding meltdowns. I'm sure you already know this but if you're like me, sometimes you need to be reminded of something you already know in order to put it into action. With everything swirling around in our minds it can be difficult to be mindful of things we already know.

I feel for you folks that have bedtime issues. I'd take just about any other kind of difficulty than sleep issues. Wish you folks were closer as I'd offer to watch them so you can catch up on some sleep.

My son still resists bedtime, and he's 10! I remember it was much worse when he was younger, but the "pre-warnings" are probably your best bet.

The using pictographs arranged on a timeline can help - drawing/picture of a clock with hands at 17:00 next to a picture of the child (or whole family) at the dinner-table, 20:00 = brushing teeth, etc... in a visible location can do wonders for some, but it will take time.

Patience! (the lack of, is probably my fatal flaw, but I try) Understanding, is probably as close as I get...

I do get frustrated in having THE SAME FIGHTS, over THE SAME THINGS, every night. In stead of getting mad, I'll simply repeat the "command", calmly (blandly, even), and remind him that "we have to do "the thing" every day, there's no point in fighting it". Maybe not perfect, but I've managed to keep most of what’s left of my sanity.

How do they put it? "Parenting - the toughest job you'll ever love". Cheesy, I know, but I wouldn't trade it for anything.

Like FSeven, I wish you were all closer so I could help out. My son does stay up late, but when he's in bed, he's there for the night.

So many agrees with him, Wink, and Purevil about reminding your son of the routine and giving him early notice about what's going to happen. It is so helpful for my son, and works amazingly well at avoiding tantrums. The logic and external structure just seem to click with him.

We also use a visual schedule and social stories with him. I think they must work for similar reasons.

I know I'm not on the spectrum, but I've seen several items lately about the higher rate of autistic traits in parents of children with autism. My husband and I both give a lot of attention to detail and definitely have obsessive interests. I'm curious whether any of the rest of you NTs see autistic traits in yourselves as well.

Something else that surprised me about the sensory side: I just got my son his first Lego set. I helped him put it together. So many sensory memories of playing with Lego when I was a child came flooding back: the incredibly satisfying sound and feel when you snap the bricks together, and (most surprising) the great way they smell. Must...buy...more...Lego... And my son is over the moon with the set.

It's interesting you would mention that, Concentric, because I've been wondering about that lately. I'm about 99% certain I'm not on the autistic spectrum, but I am however convinced, and have been for some time now, that I am a Hyper Sensitive Person. If anything, I'm an introvert, and have some obsessive compulsive tendencies (pretty benign and limited to a few silly things like setting out clothes to dry on the clothesline, it has to be done just so, and if my husband does it wrong, I'll redo it - so that it dries more effeiciently). I mean just look at my cuckoo spreadsheets: for GWJ tags, for my Guild Wars 2 characters, for my gaming backlog...
I used to joke that Matt was indeed my son because he can never seem to head inside his home daycare without closing the gate behind him. He can't leave it open, he just has to close it.
Of course, whether that has anything to do with anything, I couldn't say.

Eleima wrote:

I'm still struggling with guild and all the "what ifs". Is it because my husband was 36 when he was born? Is it because I have PCOS and took fertility meds in order to finally conceive? Did we let him watch too much TV? Or was it the wifi? Or is it because we've been fighting off and on these past months? Questions that are more or less rational, but in the end, a moot point. I know I need to stop asking "why?" and start asking "what can I do?"

We had my son evaluated for various developmental delays when he was two, and as our concerns grew we went through so many of those same questions. What had we done? What should we do differently? In what way is this our fault?

Our final diagnosis came by way of a genetic test. My son has a rare genetic disorder that comes with a whole variety of handicaps, including autistic behaviors. It was absolutely devastating to get that news and to realize that the whole course of our lives had shifted under our feet. But there was also something important in it: it wasn't our fault. My son wasn't disabled because of anything we had done or hadn't done in terms of his upbringing; it was because he was missing some crucial sections of one of his chromosomes.

But the type of genetic screening we had done is rarely ordered by doctors, so it's interesting and sad to think that there are other kids out there with my son's same condition whose parents don't know it. And I hope they're not beating themselves up thinking that they did something wrong when the problem is far beyond their control, but if other parents are anything like me then I'm sure they are. It's only natural to try to find a reason or a cause, and it's only natural to look at the things you can control as that reason or cause.

As you get your son evaluated and diagnosed, you may not get the kind of clear-cut answer that we did. (And it's a mixed bag. In some ways, we're very lucky to have a clear idea of prognosis and cause. At the same time, his diagnosis killed a lot of hope and optimism. The future died for awhile.) But it's important to remember that things like this happen more often than not for no good reason whatsoever. It's random. It's bad luck. And most importantly, it's not your fault or your husband's.

Another thing that's important to remember is that it's ok to grieve. Much like losing a loved one, hearing that the idea you had in your head about what having a child would be like is no longer an option can be a huge blow. It's ok to wish things were different -- it doesn't mean you don't love your child.

And +1 to everyone reminding you it's not your fault. The #1 factor in potential ASD is genetics, and we don't even understand exactly how that works.

I also love the Zero to Three website, you might want to read up on their sleep section in particular. Changing a routine is hard though. You ever hear about how people who live in the country who stay in the city can't fall asleep because it's too loud, and people who live in the city who go to stay in the country can't fall asleep because it's too quiet? We have a whole mess of associations with what circumstances are necessary for us to feel content going to sleep, and your little one will likely take time to get used to any disruption from that.

I keep coming back to Far From the Tree by Andrew Solomon. It's about parents who have children with significant differences. It came out when my son started showing signs of autism. It was both fascinating, a tremendous comfort, as well as a way to channel my worry and grief. I highly recommend it.

This is the trailer for the book. I saw it for the first time when my husband and I had the opportunity to hear Solomon speak here in late April. Watching it really stirs my heart up.

All caught up with the thread and it's nice to see some progress with therapies and all the great resources (thanks Concentric!).

Thanks for the kind words, Clocky and Stupidhaiku. I know it's not our fault, I guess, but I can't help the brain weasels. And I can't but feel a bit of despair. First it was conception, I had to give up on having a "normal" conception, then I grieved for the natural birth I'll never have when I had to have a section for my second. And now there's not a shred of doubt in my mind that my son is somewhere on the autistic spectrum. This is going to sound awful but I really hope #2 isn't, because at this point, I'm not sure how much more I can take. Then again, if that does come to pass, we should have a better handle on things.

We're mostly determined and ready to go forth and do whatever we can to help him, but today isn't a good day for me I guess. Matt just woke screaming and crying from his nap and is completely inconsolable. The more I watch him, the more I see the signs and wonder why I didn't act sooner. Ever since we got back from our trip to see family, he's been a lot worse, spending stretches of time lying on the floor when playing with a toy bus, or putting his entire fingers in his mouth and biting them. It's so bad now, he has a bunch of sores on his chin. I hope it isn't hand foot and mouth disease.

After the frustrating appointment with that incompetent pediatrician, we've been doing some digging. France has a pretty good healthcare system but from all the information we gathered from parents associations, we're lagging behind. Apparently, some doctors are still going with the outdated "it's because the kid has a crappy relationship with his mother" theory, and using a "medicate first, ask questions later" approach. I'll die before I let my child be treated that way. So we're seriously looking into immigrating to Canada, or alternatively, settle near the Belgian or Swiss border. We're ready to pay out of pocket if need be, and I've always wanted to return to North America ever since I left in 2001 anyhow. It doesn't seem to be an easy path, but there's a severe lack of therapists in France, and I'll be damned if I don't give my child a winning chance. I'm not going to sit back and watch time fly. There are a lot of issues to be worked out. For me to immigrate, I need to have a year of practice under my belt, and I'm just finishing my residency. So that would mean hubby leaving early on a tourist visa with Matt, getting him the diagnosis and therapies needed, and me staying back with #2 until we got the green light.

Good grief, it's so tiring, today is just not a good day. And I get so sad when I go grocery shopping and see all the NT kids holding their parents' hands and obeying when told to "come here"...

Eleima wrote:

Apparently, some doctors are still going with the outdated "it's because the kid has a crappy relationship with his mother" theory

Doctors are surprisingly incompetent in this area and there's tons of this even back here in NA. I don't know how things work out there but my experience is that primary care physicians/pediatricians are almost never helpful. If you can find one, a specialist in childhood developmental disabilities/ASDs is usually best.

I'm sorry you're having a bad time today.

stupidhaiku wrote:
Eleima wrote:

Apparently, some doctors are still going with the outdated "it's because the kid has a crappy relationship with his mother" theory

Doctors are surprisingly incompetent in this area and there's tons of this even back here in NA. I don't know how things work out there but my experience is that primary care physicians/pediatricians are almost never helpful. If you can find one, a specialist in childhood developmental disabilities/ASDs is usually best.

I'm sorry you're having a bad time today. :(

I agree. My pediatrician is really good overall, but she and the other pediatricians who saw my son missed the ASD entirely. To her credit, she acknowledges that she didn't have the basis of observation to make the right call. I think it's important to keep that in mind.

The person who urged us to get my son evaluated was my daycare provider. My pediatrician tells the residents she trains this story, so that they understand that they should be aware of and respect the knowledge of people who know the child best.

You and your husband are parents of action! That's going to be a very good thing for Matt!

He'll progress at his own rate and when he's ready, but we have seen so much progress regarding the things you are worried about with my son. He is much, much better able to listen to us. In part that's him just growing up, but I have to give a lot of the credit to the therapies he's received. It's been a very good thing to learn some of the techniques ourselves so that we can reinforce things in between sessions.

It's really easy to beat yourself up, but try not to (note: I am a past master of this). Noticing a problem when you're in the middle of it is always difficult.

Love to you and your family!

concentric wrote:

To her credit, she acknowledges that she didn't have the basis of observation to make the right call. I think it's important to keep that in mind.

That's fine, what bothers me is when they see a child and assume they know what ASDs look like because they've read the DSM criteria. A specialist experienced both with the spectrum and with a formal diagnostic tool is absolutely required, both to ensure that kids who need to be don't remain undiagnosed and to ensure kids who shouldn't be aren't.

Great big thanks to the both of you, really. Doing a bit better, tonight, he actually came up to his dad around bedtime and "asked" to be put to bed (I use quotation marks because he still doesn't speak, he'll just tug on your hand and lead you to where or what he wants). We had some friends over for dinner, so he didn't immediately sleep (they can be a bit loud), but still, it's progress.

What scares me, to be honest, are the stories of other parents who report that even specialists in this field are a bit med happy. I don't know, but I'm very cautious and just all too wary. I know the system inside and out, and I know its flaws all too well. I'm fully prepared to have to be my son's advocate, no matter what. We both are. I just can't believe we have to wait until September to have him evaluated, it just seems so far away... Hopefully, we'll have an appointment for some speech therapy soon, though. Can't thank my friend enough for picking up her phone.

stupidhaiku wrote:
concentric wrote:

To her credit, she acknowledges that she didn't have the basis of observation to make the right call. I think it's important to keep that in mind.

That's fine, what bothers me is when they see a child and assume they know what ASDs look like because they've read the DSM criteria. A specialist experienced both with the spectrum and with a formal diagnostic tool is absolutely required, both to ensure that kids who need to be don't remain undiagnosed and to ensure kids who shouldn't be aren't.

I agree. What I meant is that we couldn't just take our pediatrician's diagnosis as the final word, but I do give her credit for seeing, in hindsight, the limits of her knowledge.

We absolutely needed to get him diagnosed by a specialist. And that meant we had to push the system to let us get what we needed.

ETA: I think the source of the issue was that I placed "It's important to keep that in mind" where I did. It would have been clearer what "that" referred to if I had put it where I meant, before the sentence "To her credit..."

I'm glad to hear this day has been better, Eleima.

Eleima wrote:

I'm fully prepared to have to be my son's advocate, no matter what. We both are.

That, my dear, will make all the difference.

Oh didn't mean to imply you were being coarse and I didn't intend my post to be interpreted as such by you or anyone else. It was just an opportunity for me to get up on my soap box about a pet peeve, sorry if it seemed harsh. Cupcakes are on me next time.

sometimesdee wrote:
Eleima wrote:

I'm fully prepared to have to be my son's advocate, no matter what. We both are.

That, my dear, will make all the difference.

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Thank you. That's the theory, but practice can be a bit trickier. I can't believe hubby and I argued last night when trying to fill out some immigration forms. I thought we were over some hurdles and then tiredness sets in and they rear their big ugly heads once more. *sigh*

So as I said bedtime was a big success but Matt did wake once and wander into our bed. Then baby number two woke. Again and again. He was sleeping through the night but a cold has upset his schedule.
For the first time since we got back, Matt is awake before it's time to leave the house. And as soon as his dad left, he was inconsolable. Only thing that pacified him is a cartoon. I hate doing that but getting ready with toddler and baby is hard enough as is. He'll watch cartoons (and long ones too, Ice Age, Kung Fu Panda and Finding Nemo are his favorites) like there's no tomorrow, another thing he has in common with Gewy's little one.

Eleima wrote:

Great big thanks to the both of you, really. Doing a bit better, tonight, he actually came up to his dad around bedtime and "asked" to be put to bed (I use quotation marks because he still doesn't speak, he'll just tug on your hand and lead you to where or what he wants). We had some friends over for dinner, so he didn't immediately sleep (they can be a bit loud), but still, it's progress.

What scares me, to be honest, are the stories of other parents who report that even specialists in this field are a bit med happy. I don't know, but I'm very cautious and just all too wary. I know the system inside and out, and I know its flaws all too well. I'm fully prepared to have to be my son's advocate, no matter what. We both are. I just can't believe we have to wait until September to have him evaluated, it just seems so far away... Hopefully, we'll have an appointment for some speech therapy soon, though. Can't thank my friend enough for picking up her phone.

That's huge, Eleima. That's how my son started. The words will come. Just the fact that he is taking the initiative to express a need and notify one of you about his needs is great progress. Speech Therapy helped tremendously to get the words flowing.

One thing I did to get him started was to grab the Original Horn Kit from TalkTools. It helps exercise and strengthen the tongue and mouth muscles when following the program hierarchy. I also picked up the silicone chewy tubes but that was more to address his oral hyposensitivity. He ended up chewing pieces off so we scrapped that but were encouraged by the fact that his jaws were strong enough to chew through the tubes in the first place.

Eleima wrote:

He'll watch cartoons (and long ones too, Ice Age, Kung Fu Panda and Finding Nemo are his favorites) like there's no tomorrow, another thing he has in common with Gewy's little one.

Actually, my son won't watch TV at all. He could care less about it. To me, that's as sure a sign as anything that something's off with him since all kids love TV, right?

I have some thoughts about "specialists" that I'll post in a bit.

gewy wrote:

Actually, my son won't watch TV at all. He could care less about it. To me, that's as sure a sign as anything that something's off with him since all kids love TV, right?

Unless you're raising a hipster...

My 4 year old has a strange affinity for mustaches and fixed-speed bicycles. Whatever could it be?

Eleima, getting a baby, toddler, and yourself ready to go in the morning is no small task. I say, do what you can. My son gets agitated over changes that others might consider minor, such as which parent is getting him ready. I just let him get over it himself, but it still bothers him. But my son never hurt himself and over time has wound down more quickly. At this point, he has requirements to meet (potty, getting changed) before any screen time, but he's ready to handle it. Two years ago? Not so much.

FSeven's suggestions worked for us too. Alex always chews on stuff and we've had limited success (emphasis on success) with the sorts of things FSeven mentions. The Chew Noodle has worked best for him. In fact, I just gave it to him because I just noticed he was chewing on the power cable of his father's laptop (!!!). But there's a huge number of products out there.

Something else to settle my son down when he's agitated is being brushed (i.e. the Wilbarger protocol). It may be worth looking into.

gewy, I'll be interested to hear your thoughts about specialists. A lot of this all seems like a black box to me, especially when working with the school district.

Ack, so sorry about that, Gewy, I got mixed up. It was PurEvil's little one who can "focus like there's no tomorrow on animated films." (I knew I'd read that sentence somewhere, thought I was going crazy)

Thanks for all the helpful suggestions to fill my son's oral hyposensitivity. Not sure if they ship to my neck of the woods, but [i]I'm going to look for something similar. If anything, the info on the Wilbarger Protocol leads me to believe I'm on the right track. Sometimes, when Matt's not doing so great, I'll hold try to him tight or massage him. And the other night, I swaddled him in his down comforter. I figured "hey, if it works for babies, why not for my toddler?"

Still haven't heard back from the speech therapist, think I need to give her a ring by the end of the day. Also saw a link on autism from IFLS pop up in my feed which kinda left me despondent. Poor little #2 isn't even 4 months old, and he's already going to have to deal with his mother watching him like a hawk. I mean, more so than the average mom, I guess.

The Wilbarger Protocol works for Tristan as well. Not 100%, but enough that my wife keeps one of those brushes in her purse.

We had no luck with brushing, in fact Owen hates it.
When he is upset or agitated we usually ask if he wants a hug, and 9 times out of 10 he says yes and a quick squeeze snaps him out. We consider ourselves so fortunate that for the most part as long as we tell Owen what is happening we have very few tantrums. He pretty much always says NO right away, but doesn't usually mean it

I'm in the same boat, Gewy. I'd be over the moon if my son was capable of understanding stuff we said and of making himself understood.
I know exactly what you mean about prioritizing the availability of behavioral therapists, schools and other more "hands on" professionals who can have a direct impact on my son. It's something that my husband and I are very much keeping in mind, but having a hard time explaining to our respective parents. They're a bit old fashioned and think specialized pediatricians and medication are enough. This is why we're so intent on immigrating: France has its fair share of competent doctors, but seems to be lacking in behavioral therapists. We're not rushing into anything just yet, but despite our parents being thrilled at having us within driving distance once again come November, if there's the slightest chance that Matt isn't getting the help he needs... we'll be gone so fast it'll make their heads spin.

gewy wrote:

Anyway, I was going to type some long thing about the specialists we've seen and what I think they're useful for (or not), but it's probably not universal so I'll just note that the providers who diagnosed my son are not involved in his treatment in any way. They just made some general recommendations and provided some contact info, but it was almost completely up to us to establish his treatment. The school system here seemed like it had earnest, trustworthy teachers but it was clear they would have had no idea how to work with my son. If you're going to move somewhere make sure they have good speech and behavioral therapists, special needs schools, or autism treatment centers. Child psychiatrists or developmental pediatricians probably won't be heavily involved over the long run.

This is so true about the specialists who diagnosed my son. They are well-meaning, but not at all involved in the day-to-day work.

Having to figure out the game plan for treatment was also basically up to us. I find that very frustrating, since there are so many good and bad options out there. I am not at all a trained specialist but feel like I have to be one in order to make good decisions about my son.

I meant earlier to post another helpful resource: on iTunes U, the Yale Autism Seminar. I've watched the overview, those by Ami Klin, and the ones on assessment and speech and communication, and at the very least they were great at giving me insight into how the specialists approach children who might be on the spectrum, in addition to providing helpful information.

I also found this series on iTunes from the MIND institute but haven't listened to it yet. I have done a couple of webinars as well, one on anxiety and OCD in people with ASD, and another about positive discipline. These and other are hosted by the Autism Research Institute.

gewy, I see some of what you say about your son in mine. Something I've seen mentioned a few times recently is that autistics past the toddler/preschooler stage say that they understand and want to communicate, but that their bodies don't do what their minds want them to do.

The big thing you'll need is a diagnosis. Once that's out of the way getting services is generally much easier. Also, almost all my kids with ASD love being squeezed (pretty hard!) underneath a pillow (great for getting them to start requesting, too).

Wow, it's like a completely different world you guys are living in where you can explain things to your child and they have an understanding. I can't imagine what that would be like. Right now I think there are well trained dogs that have greater language ability than my son.

Anyway, I was going to type some long thing about the specialists we've seen and what I think they're useful for (or not), but it's probably not universal so I'll just note that the providers who diagnosed my son are not involved in his treatment in any way. They just made some general recommendations and provided some contact info, but it was almost completely up to us to establish his treatment. The school system here seemed like it had earnest, trustworthy teachers but it was clear they would have had no idea how to work with my son. If you're going to move somewhere make sure they have good speech and behavioral therapists, special needs schools, or autism treatment centers. Child psychiatrists or developmental pediatricians probably won't be heavily involved over the long run (except with medications).

On chewing: my son never took to necklaces or bracelets designed for chewing. Since he was chewing primarily on his shirt collar and sleeves, we tried tying a bandana around his neck since it's cloth, and he took to it immediately. We have to swap them out throughout the day as they get soggy, but as long as he has a bandana he won't chew on anything else. It's made life a lot easier.

Trust me when I say we work my son HARD on a day to day basis, he's come such a long way. 8 months ago he didn't seem to understand anything we said but pretty much every interaction involves some form of "therapy", and at this point it's become second nature to us.