Autism thread

Eleima wrote:

I see him walking on tip toes a lot more, or spinning around in circles. It's not that big of a deal, but he didn't do it this often before.
I can't help but think that the deteriorating relationship between his father and I has some role to play.

I'd try not to think this way. From what I've seen with my own son and other kids with autism, these kind of sensory issues are going to crop up and evolve whether your marriage is good or bad. I doubt it's playing a significant part in it and there's no point in feeling guilty.

To be fair, it's not just the tip toes and spinning. He has a lot more meltdowns, and is more difficult (he refuses to eat or nap) when the both of us are around. He does much better when there's only one of us, or even neither.

I have to say this has been a wonderful Christmas for us.

It's been 1 year since Owen's diagnosis, and this kid has had a meteoric rise through the past year, the last 2 months insanely so. Every day he amazes me.

Last year he was almost 3 and couldn't care less about Christmas. Didn't open a single present, and wanted nothing to do with Santa or the like.

Fast forward to this year, the kid got up early and asked about presents. Ripped through all of his presents exclaiming absolute glee everytime he opened something, and then wanted to open everyones presents.

Relatives who hadn't seen Owen in a year remarked that they wouldn't even know he had the diagnosis anymore. It's almost like he's ditched all of his social and sensory problems, and his only real crutch these days is his speech (which is improving every single day). He was interacting with everyone and he saw A LOT of unfamiliar people on a daily basis. He never shuts up, and is using 4 and 5 word sentences routinely. Pretty great considering in December of last year he was basically non-verbal.

I feel so fortunate that he is making such great strides, as I know not everyone has the same fortune. This kid makes me want to cry everytime I think about how well he is doing compared to a year ago. I know he works so hard, and I couldn't be more proud of him. I know school will be hard for him, but I take some solace in knowing he is gaining social skills at a rapid pace and even has 2 best friends who absolutely love spending time with him, quirks and all.

Sorry for the blabber, but I'm just a beaming old fool right now.

So yesterday my son managed to climb on top of the kitchen table where he proceeded to bounce up and down and spin the chandelier around. I lost my balance trying to get him down and we both fell. Luckily there were some random boxes nearby that kind of broke our fall and I just wound up with a scraped up elbow- nothing bad.

We are on the verge of giving up all use of counter and desk space. He can reach everywhere and any object up there will wind up on the floor somewhere at best... In his mouth at worst. This has led to few scary incidents with pens and utensils and such.

Sometimes it feels a bit like we have a large, destructive wild monkey living in our house. A depressing thought, since he's just getting bigger and stronger.

The good news I guess is that he seems to have lost interest in the drawers. So the stuff in there seems safe for the moment. Either that or he completely forgot how to open a drawer, which would be a pretty pitiful and discouraging.

Eleima wrote:

To be fair, it's not just the tip toes and spinning. He has a lot more meltdowns, and is more difficult (he refuses to eat or nap) when the both of us are around. He does much better when there's only one of us, or even neither.

My youngest daughter who is 13 has struggled with some emotional difficulties over the past year or two, and for a while we had some SERIOUS outbursts and conflict in our house. Owen reacted very negatively anytime these things would happen, we would see an increase in stimming, meltdowns, and just general shutdown. We try to limit his exposure to any arguing or yelling as he really seems sensitive to it.

The awesome Occupational Therapist my daughter has been seeing for the past six months told us yesterday that she's leaving the practice for a shorter commute. She's there for two more weeks, and we can't bring my daughter next week because I got slated to work on Saturday.

I wanted to ask her where she was going so we could follow her. She's the one who turned us on to ILS therapy, which has been working some magic, and her energy matches my daughter's so well it's spooky.

It's a great office, so I'm hoping there her replacement will be as excellent, but it's hard to imagine a better fit.

As problems go, it's not a huge one, but it is still a downer for us.

The early autism team leader will be coming to my daughter's Early Access speech therapy session next week. I'll be glad to get her assessment, but I am not looking forward to the possibility of 4x weekly therapy sessions for my daughter. We'll see.

I know the feeling when a good therapist moves on. We also have a great therapy center for my son, but still, the transition isn't fun. Therapists also get attached to the children they work with, so I am guessing that they don't like it either. As a teacher, I miss working with certain students when they graduate. My son's OT tried some ILS with him, but he would not tolerate the headphones.

ETA: we just had the visit with the early autism team leader. She'll also be observing my daughter at daycare, but told us that she will be adding her to the early autism intervention schedule. It's just a matter of how frequent the sessions will be. My son had them 4x weekly. It may be less for her. We'll see. She is more engaged generally and the language she has is much more pragmatic than my son's at the same age, but in a lot of ways her behavior is like my son's, though not as pronounced. But there's still a big difference between her behavior and that of the other kids her age at daycare. This isn't thrilling news, obviously, but I do think the early help will make a big difference. It will just be managing the time.

Went to visit the centre where Owen will be receiving his IBI therapy. It's really interesting, it's a whole house dedicated to kids on the spectrum/developmental delay. They deal with all life skills, toileting, eating, self care. It's going to be very intensive, 830-1230 5 days a week for as long as he needs. Hopefully this will ready him for school.

He loved it so much, he didn't want to leave. The therapists all seem wonderful, young and enthusiastic.

I think this is going to be huge for Owen, I'm so excited for him. The selfish part of me is also looking forward to some respite...

This evening my daughter came looking for my wife and said:

"Mommy. Can you play with me?"

My wife was elbow-deep in making dinner, and asked if it would be ok if daddy played instead. She agreed and we played a level in Little Big Planet 3 together. It wasn't even a level that required two players to unlock anything.

When we finished, I disconnected the controller to finish making dinner with my wife. Before I left the living room, my daughter said

"I hope you had fun playing with me."

Much hugging and happy tears over here.

Bleh... Severe autism is no joke. By the end of the day, my wife and I both are physically and mentally drained. We bicker all the time and our resentment of almost everyone we know is through the roof.

My anxiety level and tension only declines when my son is asleep. This weekend he continuously made this yelling/retching noise that is the vocal equivalent of nails on a blackboard. Going to work is almost a relief. I still hate work though.

All little guy does it seems is climb furniture and make messes and noise. Not a moment of calm. Maybe I'm not cut out for parenting. I know typical kids can be pretty draining too. But it seems like it's offset by the joy of seeing them progress or at least the knowledge that every problem is just a phase.

He has these two bruises on each side of his hip bone. Took me a while to figure it out but that's where he's constantly slapping himself. I didn't think it was hard enough to cause bruising. Guess I was wrong.

His MRI came back abnormal. Less white matter than there should be. Radiologist thought maybe he had a stroke in utero or after birth. Neurologist doesn't think that's necessarily the case; thinks the abnormalities are just related to his autism. No one can say anything about prognosis though and it doesn't change treatment.

Sad to say, but I think we've both given up on our son ever developing normal communication skills, even with an assistive device like PECS or an Ipad. It's an open question how many adaptive skills he can eventually learn. I'm not optimistic about potty training or utensils in the foreseeable future.

I would never harm myself or my child, but I can totally see what causes people to snap. Some days I just want the stress to be over, one way or another. Wife and I talk about this kind of thing all the time. Can't possibly be healthy...

My siblings set up a funding site for our little girl to get an assistive bike and adult stroller.. We met the funding goal in 17 days! So much love out there that I am speechless. The excess will go to others in the Washougal, WA community. Here is the site: http://www.youcaring.com/other/sweet...

gewy wrote:

Maybe I'm not cut out for parenting.

I just popped into this thread to see what was going on. This line struck me because it's like you're comparing the kind of parenting you're doing, with the 'average' parenting experience. But is that comparison even valid considering all the extra things you're handling? I don't think it is. I don't think anyone would say it is.

If a man is fighting the tide, he'll go under now and then. It doesn't make him a bad swimmer.

My heart goes out to you, Gewy, and I know what you mean. I too feel like the worst mother in the world more often than not. Doesn't help that I'm not there during the week and that I'm actually relieved to get such a long break from him... I hope you get a breather soon.

So, we just had a meeting with one of Tristan's therapists, along with a county psychologist that saw him... about a month ago. There was some question from the team that had seen Tristan from the county about whether or not he was on the spectrum at all, because his vocabulary has exploded, he's playing with others (though he has to feel comfortable with them), he shares toys and such, and doesn't show a lot of the classic autism signs.

After the psychologist saw him the first time, she didn't want to tell me a lot, but did mention that she didn't see any of the autistic signs she was actively looking for. Also, she first observed him after 6-9 months of therapy, in which he showed a ton of improvement.

Last night my wife and I had to do a survey that went over his behavior and development, my wife did another survey today that asked different questions, and his main therapist did a survey independent of ours. All three came back elevated for autism. So while he doesn't show a lot of the classic signs, he very likely is on the spectrum, just pretty far toward the higher functioning side... which is what I've been saying all along. But we'll also likely get a diagnosis of ADHD later on, so we're going to have to look into therapy that helps with that, as neither of us want to just toss meds at him hoping it tames him down.

Owen has really taken to going to IBI this first week. We were apprehensive about leaving him with a group of therapists he had no rapport at all with for 4 hours a day. Turns out we were wrong once again, he continues to surprise us. He absolutely loves going to "school", and has settled right in.

They are already working on toilet training which is wonderful, because we have gotten nowhere at home.

I really hope this will have him ready for school in the fall, because I know that's going to be hard.

Oh wow, that's excellent news for Owen!! And I'm kinda jealous, because we're slowly going nowhere on potty training ourselves.

For goodness' sake, if we could only make progress on bedtime... I'm just so exhausted, and I'm not even there every day. Saturday evening, I spent about an hour driving around, a third of that on the highway, in the vain hope that he'd fall asleep in the car. No luck. He finally fell asleep around midnight.

That is good news about potty training. Alex is still...very...slowly...making progress. Many times he does have a dry diaper, but while he will sometimes tell us he needs to go, we do have to remind him. He'll be 5 in May. Thank goodness the IEP makes it possible for us to get support for that at school.

Eleima wrote:

For goodness' sake, if we could only make progress on bedtime... I'm just so exhausted, and I'm not even there every day. Saturday evening, I spent about an hour driving around, a third of that on the highway, in the vain hope that he'd fall asleep in the car. No luck. He finally fell asleep around midnight.

We went through that and finally talked to our doctor about a sleeping aid for our son. We'd spend three to four hours a night just getting him to bed, not to mention all the times he got up during the night. We were really resistant to getting him medication; we felt like it made us bad parents if we had to drug him to sleep, or that somehow the problem was with our methods or routines.

Sleep medication has made a world of difference for my wife, my son, and me. He gets rest that he needs, so he's a lot less crabby during the day, and my wife and I no longer feel like we're being starved for free time or time together. It hasn't completely fixed the problem, and sleep continues to be an issue, but it's way better than it was.

My son's on 0.15mg of clonidine, if you're curious. (He's almost six.) That'll get him to sleep for about four to five hours with only a handful of short interruptions. He doesn't sleep quite as well after that, but we felt like an additional dose of medicine in the middle of the night (which his doctor signed off on) left him just a wee bit groggy in the morning.

And potty training? Not even on our radar at this point. We're slowly working on getting him to take a bath again, then the next target is getting him to maybe eat some solid foods, then maybe we'll work on potty training.

UpToIsomorphism wrote:

There is an interesting discussion on autism on Isometric this week.
http://isometricshow.com/

I finally got around to listening that episode, and... wow. Listening to Steve Lubitz talk about his daughters and what it's like. It got me teary eyed. And the ensuing discussion was super interesting. Thanks UpToIso.

ETA: Thanks for the feedback, Clocky!! We're on melatonine, but that's just not working anymore. I tried boosting the dose, but no luck, and I don't want to go beyond, since I'm not as comfortable with melatonin as I am with other drugs. My parents' GP is absolutely no help, so I need to try and get a consult with the neuropediatrician. :/

We went the melatonin route for awhile until we realized we were giving him horse-sized doses that weren't really helping. We did it in consultation with his pediatric neurologist, so I was comfortable with the doses he was getting, but they just weren't helping.

We had trouble with getting my daughter to sleep. Some nights it would be past 2 before she finally passed out. The solution for us turned out to be 1) Lights out by 10pm and 2) wake her up at 7am sharp every morning no matter when she fell asleep. We found she'll stay in her room consistently when we let her have a crank-powered flashlight to read with.

She still tends to stay awake until 11 or so, but at least it's relatively predictable. Let her sleep past seven, even by 10 minutes, and prepare for a late night.

My wife stays up with her most nights, since she's a night-owl anyway and I have to get up for work at five, but I take the weekends and let her (my wife) sleep in as late as she wants.

This has been in tandem with all of the things like ILS, therapies and other efforts we've been putting in, so I can't say what truly worked. I do know that every time we've pushed my daughter on something, she's gotten worse and every time we've let her come to it on her own it was amazing.

Owen struggled with sleep pretty much since birth. We were close to going the medication route, but something has clicked for him and now he sleeps about 10-12 hours. He is a very restless sleeper, and wakes often through the night. We have given up on trying to get him to go to sleep on his own, so he either falls asleep in our bed and we move him or we lay down with him in his bed until he falls asleep. Most nights we end up with a 4 year old in our bed, but we are finally getting a decent night's sleep.

If this goes on for much longer we are going to need a king sized bed!

El-Producto wrote:

Owen struggled with sleep pretty much since birth. We were close to going the medication route, but something has clicked for him and now he sleeps about 10-12 hours. He is a very restless sleeper, and wakes often through the night. We have given up on trying to get him to go to sleep on his own, so he either falls asleep in our bed and we move him or we lay down with him in his bed until he falls asleep. Most nights we end up with a 4 year old in our bed, but we are finally getting a decent night's sleep.

If this goes on for much longer we are going to need a king sized bed!

My son (not diagnosed, but we suspect dispraxia) is 5 and still can't fall asleep without me in the room.

This may shed light on my recent decision to buy a 3DS

My son prefers to be held while he falls asleep, and he and I share a bed (or more often, the couch, which is his preference) from about midnight on. I'm not sure of the last time I spent all night in my own bed.

I'm starting to realize we've been exceptionally lucky with bedtime. I tell Tristan it's time for bed, and he'll stop what he's doing and go to his bed. He might start crying while he's going up the stairs, he might look for ways to stall like his brother does ("I have to potty", "I want hugs and kisses", "I want water", etc), but he still will go to bed on his own. He'll immediately get out of bed occasionally, and it might take 20-30 minutes of fussing at him, but eventually he'll lay down. 10 minutes or so after he's quiet, he's normally out for the night.

We're not really pushing potty training. He'll sit on the potty from time to time, and occasionally he goes, but we're taking a bit of a passive approach.

It looks like it's going to be one of those days. My son is screaming and seems to be in distress for no reason that we can tell. It's so painful to hear; I wish I knew how to help him.

Stress level through the roof. I finally told my wife to just leave for a while because she was starting to crack. Hopefully she can relieve me later. Is this what it's going to be like for the rest of his life? I fear that may be the case.

Oh thank god. He fell asleep on his bed. Naps are unheard of these days. I guess he was just extremely tired. He got the same amount of sleep as usual but I guess with the waking up around 1-2 am every night for an hour, the fatigue builds up.

I mentioned this before, but clonidine has possibly quite literally saved our life. Without it, our son would bounce off the walls for hours at night, getting progressively more distressed and upset until he just passed out on the floor somewhere.

We tried melatonin and it never worked, even at the maximum adult dose. The only time it made him sleepy was with a liquid form that made him really spaced out. Turns out it had alcohol in it. Luckily we only gave it to him once.

Apologies if this has been covered before, but I was browsing Reddit and saw that one can buy weighted blankets and duvets. Could they help a child sleep?

Here's a result I got from Google http://www.sensacalm.com/

PurEvil wrote:

Last night my wife and I had to do a survey that went over his behavior and development, my wife did another survey today that asked different questions, and his main therapist did a survey independent of ours. All three came back elevated for autism. So while he doesn't show a lot of the classic signs, he very likely is on the spectrum, just pretty far toward the higher functioning side... which is what I've been saying all along. But we'll also likely get a diagnosis of ADHD later on, so we're going to have to look into therapy that helps with that, as neither of us want to just toss meds at him hoping it tames him down.

This is where we are at with our 8 year old. It took us forever to get anyone to notice any issues, even though we knew something was up.

Week two of IBI therapy is not going nearly as well, I guess the honeymoon phase that they talk about is officially over.

Major meltdowns although today was better than yesterday.