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How do you deal with others wanting to start a SN conversation? - Page 5

post #81 of 94
Wow....I'm glad I found this thread! My son is 7 and has a rare devastating form of epilepsy, late onset infantile spams, and he is autistic. I feel like I don't even know how to relate to parents of "neurotypical" children most of the time. It is so surreal. My son looks "normal" but is really like a giant 12 month old. It was much easier to disguise when he was smaller.

I dont' mind talking about it to others though. I like to educate them. Plus I am proud of my son and the true miracle he is. I only do it if they start though. Usually the only time I start is if someone is openly staring because J is acting up....lol. Then its usually a very nasty "He has autism". That usually solves the problem. I wish I had friends that had SN kids too. Or knew someone IRL. That would make life so much easier.

It is so hard to hear other parents complain about simple stuff when I am having to give my son meds that are poisons, one of them could make him go blind at any time. I try to chalk it up that they haven't had to deal with life like I have. J has opened my eyes so much. He is a gift.
post #82 of 94
Quote:
Originally Posted by milky80 View Post
Wow....I'm glad I found this thread! My son is 7 and has a rare devastating form of epilepsy, late onset infantile spams, and he is autistic. I feel like I don't even know how to relate to parents of "neurotypical" children most of the time. It is so surreal. My son looks "normal" but is really like a giant 12 month old. It was much easier to disguise when he was smaller.

I dont' mind talking about it to others though. I like to educate them. Plus I am proud of my son and the true miracle he is. I only do it if they start though. Usually the only time I start is if someone is openly staring because J is acting up....lol. Then its usually a very nasty "He has autism". That usually solves the problem. I wish I had friends that had SN kids too. Or knew someone IRL. That would make life so much easier.

It is so hard to hear other parents complain about simple stuff when I am having to give my son meds that are poisons, one of them could make him go blind at any time. I try to chalk it up that they haven't had to deal with life like I have. J has opened my eyes so much. He is a gift.
My son is only two, but he's also like a twelve month old. In fact he still mouths things constantly (and he likes licking stuff, too). Is that something that kids with Autism outgrow? Does your son still do it? Should I try to make him stop? HOW?
post #83 of 94
So far, nothing has come up regarding DS, but he's not an obvious SN child and might never be. He has OCA2 just like me though. However, I've had people hinting about me being legally blind before. If I get a bad feeling then I will purposly avoid the topic. I don't have much patients for people like some of the UAV's mentioned by a couple of PP. If I feel they are generally interested, then I will explain that I'm legally blind and hypersensative to light (hence the sunglasses even indoors on a rainy day) and go from there. For some, that's all they want to know for others they want to know the hows and whys of it all too. Made a good friend like that once, he was a med student and we ended up talking for about half an hour on the bus. If their really lucky I'll show them my eyes. They're grey but can look blue or green depending on the light...

Well, ok it hasn't happened yet, but you never know.
post #84 of 94
Quote:
Originally Posted by MusicianDad View Post
So far, nothing has come up regarding DS, but he's not an obvious SN child and might never be. He has OCA2 just like me though. However, I've had people hinting about me being legally blind before. If I get a bad feeling then I will purposly avoid the topic. I don't have much patients for people like some of the UAV's mentioned by a couple of PP. If I feel they are generally interested, then I will explain that I'm legally blind and hypersensative to light (hence the sunglasses even indoors on a rainy day) and go from there. For some, that's all they want to know for others they want to know the hows and whys of it all too. Made a good friend like that once, he was a med student and we ended up talking for about half an hour on the bus. If their really lucky I'll show them my eyes. They're grey but can look blue or green depending on the light...

Well, ok it hasn't happened yet, but you never know.
I had never heard of OCA2 before, so I just googled it and spent a few minutes reading through some links. How fascinating! (of course I mean that in a good way, not at all meant to make light of your situation!) Now that I have a son with a genetic syndrome, I'm learning SO MUCH MORE about genes and genetic code and chromosomes...it's opening up a whole new world of knowledge to me!
post #85 of 94
Genes are cool, aren't they?

I make light of my situation all the time. I've found it helps others who don't have experience with SN feel a little better with talking about it and it makes it easier for them to understand that it's not a horribly situation to be it. Different and occasionally difficult, but it's all still good. One thing that crops up occasionally is I refer to DH and DD as the "Dark side" of the family, their both part Japanese have dark hair and dark eyes and a darker skin tone. DS and I are at the very edge of normal skin tone (ie, mary kay doesn't have make up light enough, but some other companies do) blonde hair and blue (for DS) and grey eyes. So all together, the contrast is pretty obvious.
post #86 of 94
OT but to you and your DP, MusicianDad! I'd been watching your siggy for info about your little blessing . . .somehow I missed his arrival!
post #87 of 94
Quote:
Originally Posted by Mizelenius View Post
OT but to you and your DP, MusicianDad! I'd been watching your siggy for info about your little blessing . . .somehow I missed his arrival!
Thanks And don't worry about missing his arrival. I almost did too.
post #88 of 94
My son use to put every single thing in his mouth. I know how frustrated you are. But since our children are learning, it's just at a way slower pace, when he gets cognitively to the age where other kids out grow it he will to. My son eventually quit it. You can always remind him to stop doing that, be very consistent. But he will most likely have to out grow it on his own.
post #89 of 94
Quote:
Originally Posted by milky80 View Post
My son use to put every single thing in his mouth. I know how frustrated you are. But since our children are learning, it's just at a way slower pace, when he gets cognitively to the age where other kids out grow it he will to. My son eventually quit it. You can always remind him to stop doing that, be very consistent. But he will most likely have to out grow it on his own.
It gives me hope, though, that he WILL, eventually outgrow it. Thanks!
post #90 of 94
Quote:
Originally Posted by MusicianDad View Post
So far, nothing has come up regarding DS, but he's not an obvious SN child and might never be. He has OCA2 just like me though. However, I've had people hinting about me being legally blind before. If I get a bad feeling then I will purposly avoid the topic. I don't have much patients for people like some of the UAV's mentioned by a couple of PP. If I feel they are generally interested, then I will explain that I'm legally blind and hypersensative to light (hence the sunglasses even indoors on a rainy day) and go from there. For some, that's all they want to know for others they want to know the hows and whys of it all too. Made a good friend like that once, he was a med student and we ended up talking for about half an hour on the bus. If their really lucky I'll show them my eyes. They're grey but can look blue or green depending on the light...

Well, ok it hasn't happened yet, but you never know.
I know someone who wears sunglasses even indoors. Some accident caused the problem, but night time is the only time he can go w/o his glasses.
post #91 of 94
Quote:
Originally Posted by ShadowLark View Post
My son is only two, but he's also like a twelve month old. In fact he still mouths things constantly (and he likes licking stuff, too). Is that something that kids with Autism outgrow? Does your son still do it? Should I try to make him stop? HOW?
Off topic, but we have had this conversation at our house, mostly because some of the things he wants to mouth (like wood chips) seem kinda toxic. We've settled on small legos - he loves them, they're "relatively" non-toxic, and very portable. Small rocks outside work too. He's never had any choking issues, he seems very aware of how to be safe with small objects in his mouth. We've also noticed that when he doesn't have something readily available to put in his mouth for a stretch, that he either 1) starts chewing on crazy stuff like the leather chair, or 2) gets much less happy and engaged with his world. Mouthing things seems to help him process... Kind of like if you hold my hands still then I can't talk very well, if that makes sense. Anyhow, just our family's story on that subject!
post #92 of 94
Quote:
Originally Posted by Justthatgirl View Post
I know someone who wears sunglasses even indoors. Some accident caused the problem, but night time is the only time he can go w/o his glasses.
Me too. We have a dimmer switch in the master bedroom and bathroom and they have a mark on them so DH knows how high he can turn the lights without hurting my eyes. It's not very bright, but he has learned to navigate with limited lighting.
post #93 of 94
Quote:
Originally Posted by mamafish9 View Post
Off topic, but we have had this conversation at our house, mostly because some of the things he wants to mouth (like wood chips) seem kinda toxic. We've settled on small legos - he loves them, they're "relatively" non-toxic, and very portable. Small rocks outside work too. He's never had any choking issues, he seems very aware of how to be safe with small objects in his mouth. We've also noticed that when he doesn't have something readily available to put in his mouth for a stretch, that he either 1) starts chewing on crazy stuff like the leather chair, or 2) gets much less happy and engaged with his world. Mouthing things seems to help him process... Kind of like if you hold my hands still then I can't talk very well, if that makes sense. Anyhow, just our family's story on that subject!
It focuses sensory input on one main thing that's not too intense and helps him filter the stuff he has no control over. I have a friend who does oral stimming to help combat auditory input.
post #94 of 94
Quote:
Originally Posted by MusicianDad View Post
It focuses sensory input on one main thing that's not too intense and helps him filter the stuff he has no control over. I have a friend who does oral stimming to help combat auditory input.
Yeah, that sounds about right. It definitely seems like something that contributes positively to his being. That and he's teething, which intensifies the need to chew!
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