anyone dealing with these regular issues? long..

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blondeambition
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05 Jan 2012, 1:11 pm

BlakesMom wrote:
Yes, DW a Mom, that was my thought was that are we really seeing the full scope if meds are covering up some symptoms, and if not...how do we know we are handling things properly. But I'm with you....right now, we need it, day to day no question. However, he takes a stimulant that I can't really say that about....we will see what the therapist says. In regard to asking him about it, I have talked to him and he doesn't mind taking it at all...he realizes he can't sleep without it and he says he 'runs around' if he doesn't take it. haha


In my sons' cases, meds actually helped to provide a clearer picture of learning disabilities and speech issues. Behaviors and anxiety were too distracting to get a clear picture of the needs in these areas.


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05 Jan 2012, 2:13 pm

Wow! Chronos, the advice you gave to Blake's Mom was terrific. I think you are spot on about everything. I think you should have a column or write a book.



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10 Jan 2012, 10:17 pm

Hi everyone! I just wanted to share a tidbit with you about the teeth brushing. I checked out the other threads on the subject and read about what others do. So a couple of days ago I just told my son that 'I know brushing your teeth is tough for you but we know how important it is, right? So what do you think we can do to make it better or easier?' And after lobbying for no brushing, then asking for some off days of brushing, he suggested brushing at night instead. I remembered having read that another Aspie does that, so I told my son that sounds like a good idea and I will agree to that if he agrees to try to brush his teeth in the morning with water and a bit of vanilla mouthwash.

So he dips his toothbrush in the mouthwash, which he doesnt like but its tolerable. Then he brushes his teeth briefly but pretty happily! We've tried lots of other things in the morning which provided temporary relief but hopefully this one lasts. It's only been 2 days, but these have been the best 2 mornings we've had in a while! Hahaha! :)



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11 Jan 2012, 4:18 am

I can't stand toothpaste, or at least any I've tried, as it leaves an aftertaste for so long that it messes with breakfast. Usually have to do it after. So what you've got there is probably a good idea.

Can't say much else that hasn't already been said, or that I'm too knowledgeable myself. I used to and still prefer more loose fitting clothing, but that's about all I can elaborate on. In any case, good luck and hope things go well.


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Az29
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11 Jan 2012, 6:04 am

My 6yr old daughter is very similar to your son....

BlakesMom wrote:
-Blake hates to brush his teeth! It's like torture!

I wouldn't say hate, but she does avoid it, she hated mint flavoured toothpaste so we got strawberry, then she hated the strawberry so we are on a mild mint. She won't brush in the morning which I completly understand, I hate brushing in the morning, it just leaves my mouth feeling yuk all day so if I'm not going out I don't brush, just at night before bed, I'll rinse quickly with mouthwash in the morning but that's it.

BlakesMom wrote:
-He doesnt like sudden noises and is usually intimidated by loud noises but doesn't go into meltdown over it.

My daughter hates the hand dryer's in public toilets, I have to cover her ears with my hands the entire time we are in there just incase someone uses them. She isn't fond of the hairdryer, hoover or any other loud noises but she isn't as bothered and will simply move from the room the noise is in or cover her ears. We always pre-warn her so I'll say I'm going to put the hoover on in that room does she want to cover her ears or switch rooms, she'll try and talk me out of doing it, asking me to wait until later but I just say I'm putting it on in 30 seconds you can either stay or go, 30...29...28..27

BlakesMom wrote:
-Blake doesn't sleep well even with an anti-hyperintensive med.

My little girl takes ages to fall asleep, it's been getting worst the past couple of years and we are at the point now that we will put her in bed at 7, she will get up several times for various reasons..."I'm out of milk"...."by the way I found this on my floor"......"my leg is itchy"...."when are we doing X Y Z again?" and by the time she does actually drift off it's around 9.30

BlakesMom wrote:
-He finds it difficult to get dressed independently, I usually have to help him, he freaks about getting his shoes on because he often gets frustrated getting them on and tieing them.

She can get dressed but only after being reminded over and over again to get dressed, every other day sometimes more often there is a problem with what she is wearing, always with the vague description of "it's annoying me" as she flails about, it will be a tag or her kickers are twisted ever so slightly, or a sock seam will be irritating her. Because I get similar problems I can find the issue fast and know how to rectify it. If she says her shoes are annoying her I check she has them on the right feet, then I check her socks to make sure a seam isn't touching her toes at the wrong angle or there isn't a tiny bit of fluff or something inside that is touching her sole awkwardly. Then I check the shoes make sure nothing is wrong there, sometimes it's a case of she hasn't slipped her feet in the right way. It sounds kind of strange but if I don't put my feet in my shoes a certain way they will just feel so strange and unbearable to wear, my daughter has the same problem so often it's case of just taking them off and putting them on again.

BlakesMom wrote:
-He has some issues with clothes- he refuses to wear jeans, doesn't like to change outfits each day, has to wear socks to bed, recently must have long underwear on, won't change socks it stinks!, freaks when seasons change because shorts to pants or vice versa is traumatizing.

Admittedly I don't change my socks, I have a pair of socks for each pair of shoes / boots and they get worn for ages, luckily my feet don't smell, I change them about every 2 months or so but I only have shoes on when outside which isn't often. My daughter is the same she doesn't see the need in changing socks but her feet do stink so I make sure she changes them at least every 3 days. I think I understand the reason behind that and the changing of clothes, like someone else mentioned you break them in. Freshly washed clothes to me are so uncomfortable, they are stiff and smell of the washing powder and it's an unpleasant experience wearing freshly washed clothes, so as a result I don't often wash my clothes, underwear and sleepwear yes but not clothing. I have what I call house clothes, we all do and as soon as we are home we get changed into our house clothes to keep our outside clothes as clean as possible, the only time I wash my clothes or my daughter's is if they are obviously dirty or smell.

BlakesMom wrote:
-Without his med he cannot make it to the bathroom, he soils his pants everytime, I think he can't tell when he has to go until he is going.
Is this just peeing or pooping too? My daughter has a problem with her bowels that she's suffered from since she was 3, it's severe constipation with overflow incontinence. She's nowhere near as bad as she was a few years ago but even now she will have the odd accident every few months when she has let the poo build up too much. When she was little and it was really bad, the overflow was horrendous and she was basically pooping her pants every few hours in various extremes from slight soiling to full on we need to throw out the underwear and clothing. When it was that bad her bladder control wasn't very good because the hard poo was pressing on her bladder so sometimes she'd wet herself too.

BlakesMom wrote:
-He has food issues, but its not texture its that he eats everything, nonstop, spicy or not and he is never full. I think he cant tell when he is full. He often steals and hoards food as if I starve him.

We have problems with some textures and tastes, like beef, but the main one is she isn't much of an eater, I took her to the doctors when she was around 18 months because she was guzzling down litres of liquids and barely touching food. she's still the same now, eats very little, she has inherited my poor sense of taste when it comes to anything sour, spicy however again she is just like me, I can't even eat pasta arrabiata it's way too spicy for me. Have you asked Blake why he eats so much? I myself never ever feel hungry yet I could eat continuously because I love the taste and texture of foods in my mouth.

BlakesMom wrote:
-He has trouble academically. He doesn't have a super ability in math or electronics like I've read. He barely can read and is under grade level in all subjects. His iq is average and I think we haven't figured out the right way to teach him yet. plus he needs one on one.

My daughter is not very good at maths, she just doesn't get it she can do slightly better if she doesn't have to think about it too much or if it involves pictures. So if i quickly say what's 12 + 9 and give her 2 seconds to answer, alot of the time she can do it, if I let her take as long as she wants she will almost always get the answer wrong. If I write down 5+3 she will likely get it wrong if I draw 5 smiley faces + 3 teddy bears she will almost always get the answer right. Fortunately that is the only academic problem she has, her reading is very advanced and her writing...although her spelling isn't amazing and she tends to spell things phonetically she will write alot more then her peers. If asked to write a sentence or two about what they did at the weekend she will write 2 paragraphs, like me she finds it hard to summarise and has to explain in depth or as it comes across...ramble lol


BlakesMom wrote:
-And a big one....he is completely different at home than at school or anywhere. It's like he acts like he is 'supposed to' at school or somewhere and when he comes home he is exhausted from that and has to let it all out with tantrums, irritability, poor thing.

I'm pretty sure my daughter does this too, she seems different in school and the few times we've been in (on special days when parents can see how lessons go) she behaves differently.

BlakesMom wrote:
-Socially he is ok for now. Doing better saying hello and goodbye, looking at people and learning names. He plays with kids and likes to be around them, but he needs time after to decompress and play alone, also he doesn't initiate play or socializing and he seems to sometime be awkward or seems to be figuring out how to act instead of being himself. He tries to mock other kids and sometimes that isn't good.

Again we're fortunate in that our daughter is a social butterfly..at the moment. She has so many friends it's hard to keep up (for example at her last birthday party we had to stop her inviting more because we were already at 42). But...the way in which she plays I think is going to affect her socially, she's very specific about how things must be played and makes many rules for playing. At the moment the other kids don't mind her playing like this but I'm noticing more and more that she's causing arguments because of her strict rules of play and unwillingness to let other kids choose what to play. Plus like me she knows how to hold a grudge, so the slightest little fall out with another kid will result in a "I hate so and so I'm never ever playing with them ever again!" she will also seek revenge in quite cunning ways.

BlakesMom wrote:
On the other hand he is actually creative and likes to draw. He plays alone and imaginative. He dresses up in costumes and acts out every thing he sees on tv. He will watch a movie while he is acting it out.

That is an almost exact description of my daughter, she loves to draw and coupled with her writing she makes very nice story books. Her teachers always recognize her work because it will be adorned with butterflies or flower drawings. She has lots of dress up costumes and loves to mimic films, she's still obsessively watching harry potter 2 but she does ask now and again for the film night at the museum 2, she also asks for a torch and for the lights off and curtains drawn so she can be part of the film. She caught a glimpse of a programme called toddlers and tiaras about kids beauty pagents and that was it hooked, we now have to watch all of them and as soon as it's over we have to have a mock paegent with her and her teddies

BlakesMom wrote:
He notices details I usually never would, like things you can see or hear, its cool.

That statement applies to my husband as I often notice the same details my daughter does, although my sight isn't as good as hers so she may see something first but we tend to smell or hear things at the same time. Or I will notice one particular detail that she doesn't and vice versa.



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11 Jan 2012, 3:41 pm

Hi. I have experienced many of the same issues with my son. He is now 11 years old and we've licked most of them. I can tell you what worked for my son, but it may or may not work for yours. I will list the ones we experienced and how I dealt with it.

-Blake hates to brush his teeth! It's like torture! - I kept on him about this and forced it on him. Eventually, I think because of other interventions, this problem went away. Looking back, I would not have forced it like I did but would have had lower expectations such as brush only once a day or every other day to minimize his distress.

-He finds it difficult to get dressed independently, I usually have to help him, he freaks about getting his shoes on because he often gets frustrated getting them on and tieing them. - My son wore velcro shoes until this year. This minimized the frustration because he didn't have to tie. He also just learned to tie this year (at 11 years old...). My son has severe tactile sensory disorder. I put him on 600mg of Inositol 2x per day. The inositol relieved the tactile sensitivity within days. For us it was a miracle. He did not have problems with how shoes feel after Inositol. Since he didn't have a problem with how they feel anymore, the frustration and anxiety diminished as well. We still had problems for a while when it was time to buy new shoes, but that was mostly left over anxiety from his past sensory issues with wearing a new pair of shoes. This problem has also gone away.

-He has some issues with clothes- he refuses to wear jeans, doesn't like to change outfits each day, has to wear socks to bed, recently must have long underwear on, won't change socks it stinks!, freaks when seasons change because shorts to pants or vice versa is traumatizing. - Like I stated above, the tactile sensitivity was severe for my son. He was unable to tolerate any type of material other than silky track pants and sometimes sweat pants. The season changes were hard as well. I bought many pairs of the same pants in different colors and bigger sizes every year to avoid this issue. During the season change, I used to force shorts on him but then I just let it go and he would eventually start wearing them because it was just too hot. Again, once we started Inositol, these problems went away. He still won't wear jeans, but now he CAN wear jeans or whatever material if he wants to; he is able to tolerate the feeling. Had the Inositol not worked, I would have put him in occupational therapy for his sensory disorder.

-Without his med he cannot make it to the bathroom, he soils his pants everytime, I think he can't tell when he has to go until he is going. - My son pooped in his pants until he was about 9, close to 10 and couldn't wipe his own butt. I found for my son this issue had several causes. 1. He had a very limited diet, always wanted the 'same' thing (macaroni with butter and parmasean cheese). He absolutely refused to eat other food, even if it meant sitting at the dinner table for hours, being grounded, taking everything he loves away, negotiating, etc... Because of his limited diet, his poop was hard to push out. 2. He had anxiety about pooping. He didn't like how it felt (sensory) so he'd hold it for days, then he wouldn't even know it was coming and couldn't make it to the bathroom. After he got on (not to sound annoying and repetitive) 2.5mg of Abilify and Inositol, his anxiety decreased. His need for 'sameness' or OCD tendencies went away (Inositol is used to treat OCD as well) and the sensory stuff resolved. Because he didn't need the sameness, his diet became varied. He tried new foods which gave him regular bowel movements. He didn't have the anxiety over going because he didn't have the sensory problems.

-He has trouble academically. He doesn't have a super ability in math or electronics like I've read. He barely can read and is under grade level in all subjects. His iq is average and I think we haven't figured out the right way to teach him yet. plus he needs one on one. - This one is more difficult. His IQ score could be way off. Often with these kids, they are very capable but unable to learn the way others do, which can result in low or average IQ scores, inability to read, etc...

-And a big one....he is completely different at home than at school or anywhere. It's like he acts like he is 'supposed to' at school or somewhere and when he comes home he is exhausted from that and has to let it all out with tantrums, irritability, poor thing. - My son used to be able to hold it together in school just as you describe. There is a great deal of peer pressure. My son just wanted to be 'normal'. Because he spent all his energy all day trying to be 'normal' he would explode at home. Now that my son is able to verbally express himself he explained to me that I am the only 'safe' person he has because I can understand all of his problems while no one else does. At school no one understands and he knew it would be unacceptable to be himself. He would hide in the bathroom and cry at school (he admitted later) during a sensory breakdown or other issue, rather than explode in front of people. My son would come home and rage (violently) for up to 6 hours. It was excruciating for our household and dangerous as well. I tried everything I could. I had a psych teaching him coping skills, I taught him, nothing worked. He just wasn't stable enough to absorb the information he was being given to learn how to cope. Once he got stable (abilify and inositol) he was able to learn and practice coping skills. Now instead of 6 hour rages, he has 5 minute mini meltdowns, apologizes after and explains what his fears are and why he reacted this way. The key for us was getting him stable enough to be able to absorb information without so many sensory, mood, OCD stuff going on in his brain making him unable to think and act rationally.

-Socially he is ok for now. Doing better saying hello and goodbye, looking at people and learning names. He plays with kids and likes to be around them, but he needs time after to decompress and play alone, also he doesn't initiate play or socializing and he seems to sometime be awkward or seems to be figuring out how to act instead of being himself. He tries to mock other kids and sometimes that isn't good. - My son took a year of socialization class at school. It really helped him out a lot. Again, he was unable to learn proper socialization until after he was stable. It helps a lot to explain every little thing too so he can understand. Explain to him why he should say hello or good bye. Explain to him why he shouldn't talk a certain way or repeat behavior that he sees from other children. Explain how the other person will feel or think about him if he doesn't do it that way.

On the other hand he is actually creative and likes to draw. He plays alone and imaginative. He dresses up in costumes and acts out every thing he sees on tv. He will watch a movie while he is acting it out. His gross motor skills are good and he is athletic though he decided he didn't want to play baseball this spring. But he wants to play football. He loves being active.
He notices details I usually never would, like things you can see or hear, its cool.
He loves his toy cars and anything army, police, fireman, or knights! - You might want to use these interests and attributes to help him learn how to read or do math, or whatever he is struggling with. You can use art to teach math and reading. You can incorporate all of these interests he has into everything you teach him. You may have to make up your own homework or modify his school work. Once he gets it, he might be able to do the regular work without his interests mixed into it.



BlakesMom
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16 Jan 2012, 10:20 am

As always i let out a little cry of relief to hear others confirming they go through the same thing as my son. It's such a nice change!!

Before I found out all of this brushing teeth was one of my few non negotiable items and it still was one of the worst parts of Blake's day. I actually talked to my neighbor who is a dental hygienist and although many have different opinions she suggests for people with sensory issues to brush at night as that is the most important time. She also says rinsing with water and the brush is fine in the morning and she recommended this mouth wash called ACTfor kids. It has fluoride in it so it helps protect the teeth and its alcohol free so no burn and flavored. She said to rinse and spit with that in the morning if possible. These things Blake will do. And she said I don't need to feel guilty about because his teeth are still being taken care of,so good news!

Az29 Our kids do sound similar. I will warn Blake about the vacuum too and he now will stay in usually but he gets irritated sometimes. He used to get dressed himself with many reminders but he stopped. It might have gotten harder because the many reminders usually turned into me getting angry and there would then be meltdowns. I didn't know at that time what was going on, I just thought he was choosing to be difficult.

Your comment on your shoes feeling odd if you don't put your foot in the right way...to me it seems Blake has those days too, but I can't tell because he doesn't verbalized what is uncomfortable he just gets angry. I am working with him on staying calm and telling me and I help him figure it out now so hopefully that will get better. Lke yoy he also doesn't like it when the clothes are washed. He reluctantly wears them though when the others are just obviously dirty. I learned long ago that the clothes were not in my priority list and I would let him wear whatever he wants and however many times he wants as long as they aren't muddy!

We haven't had issues with texture of food, he is wide open and eats everything pretty non stop. Like I mentioned his medicine helps alleviate that but there are still some serious issues. I am going to check on the prader willi syndrome but I have a gut feel its more of a introception issue like his nervous system isn't telling him he has had enough. Who knows, it's on my list of top issues to address.

with the example of the learning thing you described with your daughter, Blake is very much like that. I was thinking maybe he is just a visual learning like I've heard temple grandin talk about. I'm very eager and interested to figure this one out and help him feel successful in school work. That is a huge priority for me because I can see he is so down on himself because of it. He has an iep and is getting more one on one so he now has actually passed subjects for the first time which he is very proud of, thought he still mentions they are no As. I just tell trying your best is an A in my book and don't give up!

My opinion on the social thing for Blake is that it's a little easier now that the kids are younger they are more accepting and get over things but as the years pass I think it will get harder as children grow and change and notice the differences in eah other. But social classes and confidence with help Blake I think.

Bjtao Hopefully the advice from the dentist I have helps you realize not only are you doing the right thing for your son and making it easier, but that still is taking acceptable care of his teeth. I personally struggled with that before.

With the soiling pants...blakes diet isn't affecting his bowel movements I think it's more of a thing like chronos mentioned that he isn't putting it in his schedule and it's too late...or it's not worth it to stop what he is doing and go. With his meds its better and almost always goes to the bathroom. But like your son when he did go and even now sometimes he can't wipe and would ask me or he simply doesn't wipe at all.

With the academics I'm looking forward to having him retested with a private doctor as the first time the school system did it. I think I will get more information when the doctors do it.

Yes Blake sounds exactly like your son about coming home and letting it go and have break downs. 6 hours is hard, Blake was more like 2 and like a ticking time bomb otherwise. It's sad now that I realize where this is coming from. I used to just thing he hated me. He is much better now, like your son, having mini melt downs and I think a big part of that is my reaction. I now don't contribute to it, I am very understanding and help him talk it out.

OT will be very helpful for us and I am confident Blake will do just fine. I looking forward to our new way of life now that I am more understanding. I wish there was a way I could talk to other parents that feel like I felt or don't know and help them understand. They might be reacting completely wrong like I was and it was making it worse. Thanks everyone for your wonderful comments, it all just helps beyond belief!!



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16 Jan 2012, 12:49 pm

i am a Aspie and not a parent, I would like to chim in on 2 things

-The Shoe tieing have you thought about tieing his shoes like the Skaters do to were it is tied and all you have to do is slip them on. I know i hated tieing my shoes because i have to stop and do it so i started tieing my shoes like what the skaters do when i first get a pair like I had to do sometime back with my skater style shoes because i like the fell

-The sleeping issue it may not be the case of your son but I have a hard time going to sleep and staying asleep without noise "like music" and light. like for example when I go to a place called Dumont Dunes like around 3-4AM when it gets silent outside after all the Quads and Sandrail drivers go back to camp to go to bed i will just wake up out of a dead sleep. At home I have WinAmp playing on my android phone and i wired up a Cold Cathode PC Case light to a 12Volt adapter for a night light.


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BlakesMom
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16 Jan 2012, 1:38 pm

Hi markitzero, thanks for your input! That is a good idea, I need to learn how to do those skater ties because the shoes he likes have laces...I think he likes to be stylish.

With the sleep...I noticed he was sleeping terribly at the same time I got him a nightlight, so I took it out and it was better, but after a while he starts to get up randomly and way too early again. Same with the sheets, I got soft ones and it worked for a while but later he still gets on the floor and wakes up. I do have a desk fan running in there for white noise....do you think I should try something louder, like music?



markitzero
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16 Jan 2012, 2:43 pm

you can try music make sure it is kid friendly music, try to volume low because I don't know how his sensory with hearing but I know with me my hearing is more sensitive in the morning and I will hear it very good on low in the morning.

A fan is white noise I know with me if I use white noise like a fan my brain will actually make noises like bangs and other noises with white noise, I know those noises are not around but it is what the brain creates. So with me I have to play music or listen to talk radio.

You can try stations like Radio Disney or Air1 those are the only kid friendly, depending on you Air1 I will say is a Christian Alternative Rock station so I am just letting you know if you are of a different religion. Just incase you try air1 there is both HighSpeed and Dial-up stream I don't know what the internet connection were you are because with me I have live in a Rural Area were Broadband is hard to find and I have a cap of 75GBs over my Wireless Provider and the only other option for me is Dial-up. You can use also a ipod or PSP plugged in or if not get a CD player that supports MP3s that can be plugged in and put on to a disc the music that he likes and with MP3 you can get alot on 1 CD-R


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BlakesMom
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16 Jan 2012, 3:40 pm

Cool, I'm going to try it and see if it works better or not. I plan to just try everything. Thanks!



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16 Jan 2012, 4:12 pm

Thanks for sharing the progress you are making!


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