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aurea
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23 Jul 2008, 7:04 pm

Hi all I have a few questions and I thought this was the best place to get some answers. :)

I have a 9yr old son J diagnosed aspergers. As some of you may be aware we are currently looking into the possibility of seizures aswell (so far not getting a lot of support except from some great members here. Thank you)
My questions are;
1. How difficult is it to keep your kids focused?
One day a week J attends a special respite Arts program for aspie kids, and yesterday afternoon one of the teachers at this program informed me that he has noticed that it takes quite a lot of reminding on their behalf (the aspie teachers) to keep J focused on what he is ment to be doing. I had told them in the morning what was going on with these possible seizure episodes, and to keep an eye out for any odd behaviour. I thought J's lack of focus must be more extreme than usual for these teachers to mention it.

Q 2. Apparently (same teachers have noticed) J forgets or is distracted easily. They have asked him to go do something, he will walk off and then come back and ask them what was he meant to be doing or he will go off and do something else thinking he is doing what was asked.
Do you or your kids do this? It happens often.

Q 3. Do your kids complain about not feeling right or not feeling themselves? I don't think this feeling lasts to long but I get the impression that it comes and goes frequently. He gets really agitated when asked to explain what he means.

I understand that there is a component of ADD/ADHD to autism. J is constantly moving some part of himself even when he is doing something he really enjoys eg the pc he is swinging the chair back and forth, watching tv he is wriggling on the couch or twirling his hair etc.
He is able to focus, he can play a pc/video game for hours on end, he will read a short novel(220 pages) in one half hour sitting. However he has at times forgotten if he has eaten, forgotten instructions even if he has gotten up to do them right away.

Q 4. Is this possibly all just "normal" AS behaviou with an ADD component or I am now wondering/worrying if infact there is more going on. Are you or your kids like any of this?

Thank you in advance. Ps I have no one else to ask all this silly questions of, except you guys (sorry) and I just want to get to the bottom of whats going on with my little boy. I have booked a call back with J's neurologist, I want some answers and I'm not sure what exactly I'm meant to be asking his school to look out for, God knows it's hard enough even getting them to notice him now.



krex
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23 Jul 2008, 7:45 pm

You just described...not only a a kid but now. If you do find out it is something beside AS...(I'm not even sure I have ADD but the AS DR tried to get me to take Adderal, so he evidently thinks so?), Please let me know. I really would like an MRI but they are so expensive, I doubt the DR would agree to one.

That whole "feeling something is wrong/not real"...is the hardest thing to get anyone to understand. I thought it as dissociation but I don't lose all memory of events...so the DR says "not that"...I just don't know how to describe the sense of Unreality that I seem to feel all the time.


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annie2
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23 Jul 2008, 8:59 pm

Hi Aurea,

I'm interested in what the seizures are like? Are they seizures or meltdowns? My AS 8 yr old son has recently started having more meltdowns at school. You could probably describe it as a seizure to someone looking on - eyes start glazing over and rolling around a bit, body then goes all floppy and he lies down and almost semi-convulses. Autism worker says it is a meltdown due to sensory overload. The way to get him out of it is distract him into another situation. You can see him starting it and if you can get in and give him a task of interest to do that gets him out of the situation then he will click straight out of it. If the teacher tries to force him "not to be naughty", then it will deteriorate further. I have almost been at the end of my rope trying to work out what the triggers are, and after a term have concluded that it is the pressure of the class environment, specifically either kids laughing at him, having to sit on the mat too long and listen or just generally being in the classroom fishbowl. The "solution" (I hope it keeps working!), is that my son is on a timetable around a different class for each of the three sessions a day, probably spending half the day working with these classes, and half of it just doing his own individual work within a class.

Another thing I am trying which you my be interested in is a dietary supplement called Phosphatydil Serine. It is getting rave reviews from a range of people with disorders, including AS and ADHD. It helps with brain function, particularly clarity of thinking and de-stressing. There was a long thread on here a couple of months back, that got me onto it. I spent about a month trying to source it in NZ/Australia (easy to get in the States), so if you're interested in any more info, just PM me. I have only been trying it for the last week, so it is still early days. Have noticed more of a social interest since we started using it, and he is calmer (but I'm not wanting to pronounce it as a miracle quite yet, as I've done that with other things and then been disappointed).

Sorry to not answer your questions specifically, but I've got to dash.



DW_a_mom
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23 Jul 2008, 9:41 pm

My son describes his brain as sometimes being in a "fog." This is the concept we've been considering addressing through diet changes, since we have heard some anecdotal stories about how cutting out gluton, for example, helps reduce the fog. He doesn't like the fog, and it's something he would be happily rid of, without feeling he has changed anything about his true self.

As for attention span, my son's attention is perfect when he's interested and no sensory sensitivities are interfering. If he's not interested, or is experiencing annoying sensory input, his ability to focus is dismal. Also, he absolutely needs to move to be able to think. And he needs to chew, lol. Sensory issues can be visual, oral or tactile. I would definitely explore those possibilities with J. It is easy to mistake sensory issues for ADD. The difference is ADD is always there; attention problems related to sensory issues go away when the sensory environment is right.


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Beenthere
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23 Jul 2008, 11:34 pm

Hope you don't mind, but I'm going to answer some of these as an adult, because most of these hit home for me.

1. How difficult is it to keep your kids focused?

Difficult...especially when there are things happening around me, or I'm in a group of other people. I may need to be focus on whatever's in front of me, but I'm fairly easily distracted by someone else talking, someone tapping their foot, chewing gum, sniffling, coughing... etc.

2. Apparently (same teachers have noticed) J forgets or is distracted easily. They have asked him to go do something, he will walk off and then come back and ask them what was he meant to be doing or he will go off and do something else thinking he is doing what was asked.

My major problem with this always was the fact I was/or am usually focused on something else or again I'm distracted by things going on around me and cannot give it my full attention. Mostly I am usually focused on something else, usually something I had been doing prior... and I find it hard to flip the "switch" so to speak...my mind doesn't always grasp the concept of "well now we're done with this and it's time to do this".


3. Do your kids complain about not feeling right or not feeling themselves? I don't think this feeling lasts to long but I get the impression that it comes and goes frequently. He gets really agitated when asked to explain what he means.

I've always had this feeling, it's doesn't happen very often anymore, although it did when I was growing up...it's hard to describe, I guess it's like krex said...dissociation in some ways. But I remember what's going on around me too. It's like I'm there, but I'm not...kind of on the outside looking in or watching it on a TV. I'm going through the motions, it just doesn't feel "right".


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Triangular_Trees
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24 Jul 2008, 12:47 pm

Quote:
1. How difficult is it to keep your kids focused?


in order for me to focus, I typically need to be doing three different things at the same time. I might be posting on here and watching a movie while studying for a test. I've weaved, crocheted, drew, played with playdough, etc during lectures in my college classes.

Quote:
Q 2. Apparently (same teachers have noticed) J forgets or is distracted easily. They have asked him to go do something, he will walk off and then come back and ask them what was he meant to be doing or he will go off and do something else thinking he is doing what was asked.
Do you or your kids do this? It happens often.


It happens a bit, especially since people ask so many stupid, need no answer question like "how are you" its easy to just be like "yeah, yeah" and never realize that they have switched to saying something you should pay attention to until its too late. Also I've noticed that verbal instructions go too fast for me to remember all of what was going on. Or if i was already in a daydream/thinking of something i might take a few steps away before realizing "hey wait i didn't pay attention to a word she just said"

Also people have a tendency to not explain themselves clearly enough for the aspie. For example in hs biology we were studying the effects of black walnuts on plant growth. We had crushed up black walnuts to make a watery solution to put on half of our plants. I wasn't sure if we were also supposed to water the plants that got the walnut solution. But when I asked the teacher the only thing he would say is "the only difference between the two groups is that the one gets the black walnut solution." So I was thinking that if I gave the control group of plants 2 cups of water, then I'd have to give the experimental group 2 cups of water, in addition to 2 cups of the black walnut solution. I don't think I was the only one confused by his answering questions that way though - because the next day it was decided that he was the only one who would care for the test plants

Quote:
Q 3. Do your kids complain about not feeling right or not feeling themselves? I don't think this feeling lasts to long but I get the impression that it comes and goes frequently. He gets really agitated when asked to explain what he means.


I was only that way when forced to be something I was not - ie a girl. You put me in a dress and i'm going to feel wrong from every part of my body and be unable to even consider playing.

However, with the epilepsy talk mentioned elsehwere, i'd just like to bring up that this not feeling himself could be a minor seizure so if he's been considered for having epilepsy you may want to mention that to his doctor

Also I'd get very agitated when someone asked me to explain something like that - after all I had just explained it to you. I said I don't feel myself. Were you not listening? Then why are you asking me to explain how I feel when I just told you how I feel. And then I'd be even more reluctant to tell you about other things because you just showed me now that you aren't going to listen to what I'm saying and then when I do say something you'll get upset because I haven't said it (and gee the more I write this the right noe more I understand some of the causes of the conversations that left me yelling in frustration and anger)

Quote:
I understand that there is a component of ADD/ADHD to autism. J is constantly moving some part of himself even when he is doing something he really enjoys eg the pc he is swinging the chair back and forth, watching tv he is wriggling on the couch or twirling his hair etc.
He is able to focus, he can play a pc/video game for hours on end, he will read a short novel(220 pages) in one half hour sitting. However he has at times forgotten if he has eaten, forgotten instructions even if he has gotten up to do them right away.



Eating is just not all that interesting when compared to things like the history of buttons or the rarer uses of leather.

I believe the reason my high school grades were significantly lower (gpa 3.1) than my college grades (gpa 4.0) was because my high school teachers required us to sit still, look at them, and sometimes even have our pencils down when they taught. I couldn't pay attention to what they were doing if i had to be concentrating on sitting still, looking at them, and not touching my pencil. Read above for what I did do, every day, in my college courses. Just about the only thing I didn't always do was take notes. My hands constantly move. When i worked at DQ i'd take a piece of cookie dough and play with it the entire time there were no customers.



krex
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24 Jul 2008, 1:05 pm

You might want to look into auditory processing disorder=not being able to hear with back ground noises. I also need to be told one thing at a time and process it before they tell me the next thing. I don't do "lists" unless they are written.


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ster
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25 Jul 2008, 5:51 am

#1,2 & 4 all fit my daughter to a T !.....she's dxed ADD-hyperactive impulsive type.....my AS son will zone out from time to time, but not overwhelmingly so



aurea
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25 Jul 2008, 5:09 pm

Hi guys and thanks to all who replied :)

J was diagnosed a few years ago with central auditory processing disorder, this was prior to the aspergers diagnoses. I did ask the autism assesment team if this was an additional dx but was told no its all part and parcel of the aspergers.

I asked about the focusing and forgetting intsructions only because I thought they must be even more severe than typical, for his autism teachers to have mentioned it.

Annie mentioned the possibility of perhaps meltdowns, no I don't think so. J's meltdowns are different. They last a lot longer and they are at the extreme ends of emotions, typically if I can spot it coming I can sometimes avert however if I can't then I have to let them run their course. These seizure type episodes it doesnt matter what we do, or what situation we are in they just come on any way and their is nothing we can do to stop it. Trust me I have tried everything.

With his latest forgetting to eat, it wasn't the normal. It wasn't just that he was so engrossed in what he was doing that eating slipped his mind. He was at his aspergers program (3 kids & 2 teachers) they all have lunch together. J ate one sandwich but later complained of being hungry and saying that they hadn't had lunch at all, he really had no memory of it. This bothers me, the fact that he had forgotten that the whole group including himself had eaten. I guess it is possible that he was in his own little world at lunch time, but at the same time I'm wondering if he is having absent seizures?



Triangular_Trees
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25 Jul 2008, 8:50 pm

Quote:
J ate one sandwich but later complained of being hungry and saying that they hadn't had lunch at all, he really had no memory of it. This bothers me, the fact that he had forgotten that the whole group including himself had eaten. I guess it is possible that he was in his own little world at lunch time, but at the same time I'm wondering if he is having absent seizures?


sounds just like it.

I have almost no memory of last year due to seizures. The only thing I can remember about the beginning of july is that I couldn't remember anything then