How do you deal with others wanting to start a SN conversation? - Page 3 - Mothering Forums

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Old 12-06-2008, 02:04 AM
 
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Originally Posted by preemiemamarach View Post
This is so, so true. It's hard for me to even read posts in the non-SN forums (here and elsewhere) with titles like 'freaking out about heel stick on my baby'. My 17 month old has probably had about 50 blood draws already. Once, during a particularly long one, he fell asleep.

It's very isolating. I have a horrible attitude when people act like something I find totally routine (like a trip to a children's hospital) is a major event- so I end up just closing off from people entirely. The endless platitudes and prayers and comments that 'I'm sure he'll get better, he's just so sweet and cute!' have worn me down to the bone. I probably need therapy myself, but I don't have enough time away from work because it's all sucked up by my son's appointments.
I do that too. I have so much trouble with people when they say things like "OMG, my kid had to have a blood draw today". You know, my daughter spent the first four months of her life getting multiple ones a day and she survived...we had much bigger issues, like, is she going to live, things like blood draws just seemed so basic...I know it's entirely my attitude, and my attitude is awful. I just haven't figured out how to fix it yet.

DD got a g-tube the other week and it was such a big deal to family and such. Honestly, to me and DH, at the end of the day it was a relief from fighting her to eat. I actually wasn't worried about the surgery, I just wanted to hurry up and get it over with. And no one gets that unless their kid is in a similar situation. I just end up feeling like a bad mother because I think that way...

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Old 12-06-2008, 10:29 PM
 
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...I know it's entirely my attitude, and my attitude is awful. I just haven't figured out how to fix it yet.
Your attitude is NOT awful. It's just the result of what you've been through. Same here. My son hasn't been through nearly as much as your daughter, but I still find myself with the same tendencies. I would love to have the "luxury" of debating whether well baby visits are purposeful or just part of the medical system's underlying "conspiracy"...you know?

Anyway...how did the topic of "starting a conversations with others about SN" turn into this?!!

Along the lines of the original topic, I went to "Signing Santa" today, which was an event sponsored by the Deaf Community Resource Center. They had a Deaf Santa there, all the parents gave gift lists ahead of time, all the kids got gifts and stockings, there was a pancake breakfast... It was so much fun! And I struck up several conversations with other parents of SN kids. We were sharing our experiences with specific drs, fighting with the school systems, etc. It was GREAT!!! We all had one thing in common...our kids use ASL to communicate. Not all the kids were deaf, some were like Connor and only slightly HoH but completely non verbal. I thoroughly enjoyed the event!!!

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Old 12-07-2008, 12:43 AM
 
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I think the topic has morphed into the inverse of the original topic: how do you talk to people who don't have SN children? This is something I'm still puzzling out.

I wish I could find someway to connect to other SN families in my area like your pancake breakfast 2boyzmama!
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Old 12-07-2008, 10:44 AM
 
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Amen. There aren't any rainbows about a long drawn out decline and death. For real. It ALL sucks. People always tell me what a strong person I am now. It hasn't made me a better person or a stronger person, it's made me a husk of a person and sucked all my energy out.
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The way grieving parents present themselves to "the rest of the world" is much, MUCH different than their interpersonal experience.
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to me it makes me unable to mention anything difficult or whatever with them. Cause, I'm the strong one, remember? I must not need that kind of thing.
you ladies hit the nail on the head. whenever people ask about how dd is doing, i always say she is doing great, we are fine, etc. nobody really wants to hear how much it sucks and how sad it makes me.

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Old 12-07-2008, 10:48 AM
 
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also, i know the conversation has moved on, but i welcome questions and discussion about my dd, especially from other SN parents. it is kind of obvious that *something* is up with her, and it is very obvious when people are trying to "tactfully" ignore it, yk?

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Old 12-07-2008, 11:42 AM
 
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I think the topic has morphed into the inverse of the original topic: how do you talk to people who don't have SN children? This is something I'm still puzzling out.
What do you mean? Good friends or John Q. Public?
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nobody really wants to hear how much it sucks and how sad it makes me.
I disagree. A good friend WILL want to know.

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Old 12-07-2008, 03:03 PM
 
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What do you mean? Good friends or John Q. Public? I disagree. A good friend WILL want to know.
I don't think this is universally true. It's rare that someone really wants to know (a) how badly your kid is doing, and (b) how you really, truly feel about it.

When someone you love dies, the other people who are close to you understand (usually) the stages of grief you must go through, and that you will- eventually- be ready to move forward. But when you have a child that will/may die from illness, I really think most people don't have any clue how to just support you through that.
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Old 12-07-2008, 06:20 PM
 
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Anyway, there are ALWAYS rainbows. The trick is being able to find them. It might take YEARS to even heal enough to look, but they're there. I guess I see it as - this could have ended as a miscarriage. It didn't - I get to hold my precious babies! I know my kids are healthy (Autism isn't fatal, after all), but I'm also gambling six more times. Six more babies - and NO guarantees with any of them! But I will be grateful for every MOMENT, even if something goes horribly wrong, because at least I got to hold my baby.
I have no objection to people finding rainbows for themselves. Good for them, and stuff. What is kind of lame is when other people try to find rainbows for someone else. There is a big difference between someone thinking "well, at least I got to ___" and someone else saying to them "at least it wasn't worse in the following way which I shall now describe", which is probably deep down really about "dude, I'm tired of watching you grieve, shouldn't you be over it by now? it makes me uncomfortable." (the usual reaction to someone else's grief IMO.)

* * *

So how do people feel about conversations IRL where someone has apparently already deduced your child's particular special need and just launches right into some advice that is apparently strongly related to it? I feel like I would rather hear someone say "my son is on the autism spectrum, is your son too, I noticed that he was hand flapping or scripting PBS shows or whatever" as a lead-in instead of "my son is on the autism spectrum, have you considered trying _____". I feel like a step has been skipped in the whole "let's initiate a SN conversation and, like, bond and stuff" process (although perhaps in the case I'm thinking of my discomfort was more due to the fact that we were really, really not going to bond over the particular advice selected.)
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Old 12-07-2008, 06:44 PM
 
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I have no objection to people finding rainbows for themselves. Good for them, and stuff. What is kind of lame is when other people try to find rainbows for someone else.
True, very true.

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I don't think this is universally true. It's rare that someone really wants to know (a) how badly your kid is doing, and (b) how you really, truly feel about it.

When someone you love dies, the other people who are close to you understand (usually) the stages of grief you must go through, and that you will- eventually- be ready to move forward. But when you have a child that will/may die from illness, I really think most people don't have any clue how to just support you through that.
Well, there is (to me) a HUGE difference between people wanting to know and not knowing how to support a person, vs. a person actually not caring. I do think a true friend would care, though I'm not saying they wouldn't make mistakes. Everyone grieves so differently and has different needs, so it's not too surprising, I guess, but it can hurt so badly nonetheless.

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Old 12-08-2008, 12:26 AM
 
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Yes, sadly, I think it is rare to find friends (and even family members) who truly know how to care.
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Old 12-08-2008, 01:35 PM
 
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What I'd like to say to all family, friends, neighbors, and strangers is:
I am an exhausted mother to 4 children, two of them have special needs. I am chronically tired, emotionally spent, and one cup of coffee away from a nervous breakdown. Don't tell me how to parent my children, don't pity me but at the same time, don't expect me to just drop everything to go here or there. Leave me alone unless you are offering to help!!!!!!!!!!!!!

Oh, I wish I had the huevos to say those things....


Yes!!!

On top of 2 of my kids having "invisible" Special Needs, I do, too. Precious few ppl know that about me and I don't like to go around blabbing it to everyone I meet. (You guys know because there are other ASC adults here and I've posted about my dx of fatigue, malaise, and my brain atrophy which was the result of an MRI 17 yrs ago - yes, I need a new one. MRI. Though a new brain would be good, too, perhaps. But mostly just the Asperger's.)

Exhaustion is debilitating, whether as a symptom of your life situation or your personal dx. You know?

I like your statement that you're one cup of coffee away from a nervous breakdown. It really nails it!

Disclaimer: I hope that make sense. I feel kind of dipsticky today.

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Old 12-08-2008, 01:43 PM
 
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I actually had a friend quit being my friend with these very words: "you're such a downer." :
That sucks.

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Old 12-08-2008, 01:49 PM
 
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My mom, who happens to be religious, has always been against the idea that it was "God's plan" for someone to die, though I know some people find comfort in that.
OT: This is my belief, as well. I don't believe that a loving God needs more angels or has a plan for that. (I'm also deeply religious.) I draw MY comfort from knowing that there is Bible-based evidence that the dead will be resurrected and I will get to see loved ones again. God didn't take anyone away. (Not that it makes losing someone any better!)

But my neighbor, for instance, believes it was God's plan, God has another angel, etc. To each, their own, I guess.

I know when my neighbor told me that after my mil died (10 days ago) that she was saying so based on her own belief and out of kindness. I can appreciate kindness, even if I disagree with the belief behind it.

Do you have the name of the book you mentioned?

And now, back to your regularly scheduled topic.

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Old 12-08-2008, 01:52 PM
 
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oh, and you have to make horrible choices. Do you give your dying child more attention because you have to fit it all in before they die, but then you risk seriously screwing up the kid that's going to live? Or do you give the kid that is going to live more attention cause the other one won't grow up to be screwed up?
Here's my two cents on this one. Take it for what it's worth because I have NO experience with this and I'm going from childhood memories of my own (when I was four and wet the bed - NOT even close to what you're going through, and I SO realize that).
BUT - here's my master plan (and I hope it at least gets the wheels turning so that you think up something that WILL help, even if my advice is so far out there as to be laughable).
Say Linden needs a bolus for his G tube. And say he eats every three hours. And say it's a time consuming process to feed him and your daughter feels left out. Have her help. Maybe she can hold the syringe, or hold the container that the food is in while you draw it up. Maybe she can talk to Linden and hold his hand or stroke his hair. Maybe she can give him a play by play.
My point is, you don't necessarily have to choose. For the times when you DO have to choose, my only advice is to do what all parents do - go to whoever needs you most at that moment. Don't think of it as "who do I give more attention to", think of it as "who needs me now". Is there anyone who can free you up to get one on one time with your daughter after work or whenever? Or the reverse?
Honestly, the sad truth is, Linden most likely WILL take up more of your time. And it's not fair and it never WILL be fair, because it's not even Linden getting that time, it's the endless caretaking activities. It's the feeding round the clock, it's making sure stuff stays clean and uncontaminated (tubing and the like) it's the breathing treatments, and that's not even counting the therapy appointments! And it will most likely get harder as he gets older, because you'll have to worry about turning him and lifting him and all sorts of other stuff. Even diapers are EASY now, but what about ten years from now (assuming you're blessed with ten more years)?
So yeah, your daughter will feel short changed at times. The only way I can think of to even TRY to make it more equitable is to involve her as much as possible, because then you're spending time with BOTH of them, and she gets to help.
I REALLY hope that helped. I'm totally shooting from the hip, here, but I REALLY want to be just right enough to give you some support.
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Old 12-08-2008, 01:53 PM
 
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I understand now how it feels for something to not just be the central focus of your life, but to be your entire existence. I wish I could have been a better friend to him and just listened.




I know what you mean, though. I think ppl just don't know how to deal with grief. We're expected to suck it up and move on. Hide if you're crying.

Heck, as a child, I was constantly told to quit crying. Ok. Now I cry in private and can count on one hand the number of times I've broken down in a sobbing, wailing, tear-stained mess of emotion after a death of a loved one.

People don't want to hear it because they don't know how to deal.

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Old 12-08-2008, 02:02 PM
 
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And my final post for now (taking dd & ds2 on a walk):

We just got back from the il's and cleaning and stuff after mil died. I realize my replies are, like, a week late. I haven't had internet access at the il's. Sorry if I screwed up the flow of the topic

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Old 12-08-2008, 02:03 PM
 
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Yes, sadly, I think it is rare to find friends (and even family members) who truly know how to care.
But is it that they don't care or that they don't know what to say? I know in my case, I care deeply, but I have NO clue of how to express that!
How do you bridge that gap when you're the one freaking out about one day in the Hospital and your friend's kid is the one in the Hospital every week? I mean when Brendon was born at 4 lbs 14 oz, I was scared he'd have a NICU stay (he was 37 1/2 weeks, so it wasn't even on my radar screen). I was ready to stay in that NICU with him 24/7 until he got out (he came home with me after 2 days, we were lucky).
I STILL feel like I dodged a bullet - how do I relate to the mamas who had babies fighting for their lives for a month in the NICU? I mean, shoot - I DID dodge a bullet. My pg was perfect and my baby was full term and healthy. So what do I say to the mamas who went through that He// that I dodged? How do I not sound either arrogant or shallow? What does one say when "I'm so sorry" isn't even remotely good enough?
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Old 12-08-2008, 02:17 PM
 
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But is it that they don't care or that they don't know what to say? I know in my case, I care deeply, but I have NO clue of how to express that!
How do you bridge that gap when you're the one freaking out about one day in the Hospital and your friend's kid is the one in the Hospital every week? I mean when Brendon was born at 4 lbs 14 oz, I was scared he'd have a NICU stay (he was 37 1/2 weeks, so it wasn't even on my radar screen). I was ready to stay in that NICU with him 24/7 until he got out (he came home with me after 2 days, we were lucky).
I STILL feel like I dodged a bullet - how do I relate to the mamas who had babies fighting for their lives for a month in the NICU? I mean, shoot - I DID dodge a bullet. My pg was perfect and my baby was full term and healthy. So what do I say to the mamas who went through that He// that I dodged? How do I not sound either arrogant or shallow? What does one say when "I'm so sorry" isn't even remotely good enough?
I wish I knew the answer. My son was a 33 weeker, but gigantic (5 lbs even). His problems were not evident until he was about 5 months old, so his 15 day NICU stay was totally uneventful. I felt *very* guilty talking to the other parents there with babies who had much poorer prognoses than my own. Yet people who had term babies who went home on time (or were born at home, unimaginable to me!) felt that I went through something major. I look back on that hospital stay and see what a cakewalk it was compared to what we're going through now.

I only knew to say 'Is there anything I can do?' with those mamas, but mostly I tried to be someone they could talk to, if they wanted to- I was in the NICU but my baby was stable, so I could spend time with some of the other parents.

More thoughts, but I have to take DS to his gastro appointment....
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Old 12-08-2008, 06:45 PM
 
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I think saying "Is there anything I can do?"; meaning it; and acting on it if you find out there is something you can do....but the person didn't tell you.

I've had a friend bring me food while we were in the hospital. She understood my dietary restrictions, I gave her specific directions about allergies, and she brought it. I needed company and the coffee, yk?

Food, books, company, distraction, and real concern. But distraction is mostly what I need with real concern in the background.

I'm not sure every family is able to express what they need though.
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Old 12-08-2008, 08:07 PM
 
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I can express what I need. I need people to love us. Love Juju just the way he is. The people who truly help me are the people who just act cool with Juju. I'm probably not going to take help even if you offer it. I don't really want to talk about it anymore unless you have firsthand knowledge of it. Talk to Juju, play with Juju, ooo and ahh over how cute he is in his new hat, and just let the sleeping dog lie.

That said - there are people in this world who have the ability to say "I'm bringing you dinner tonight, what do you want?" Those people are really cool.
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Old 12-11-2008, 01:25 AM
 
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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.
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Old 12-13-2008, 08:12 PM
 
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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?
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Old 12-13-2008, 10:31 PM
 
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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.

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Old 12-13-2008, 10:53 PM
 
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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!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 12-13-2008, 11:01 PM
 
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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.

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Old 12-14-2008, 12:37 AM
 
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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!

 2/02, 4/05, 2/07, 11/09, and EDD 12/25/11 wave.gif

 

 

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Old 12-14-2008, 12:44 AM
 
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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.

malesling.GIFMutant Papa to DD (12)hippie.gif and DS (2)babyf.gif, married to DHribbonrainbow.gif
If it looks like I'm trying to pick a fight... I'm not, I'm rarely that obvious.hammer.gif
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Old 12-14-2008, 01:09 AM
 
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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.
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Old 12-14-2008, 09:43 AM
 
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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!
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Old 12-14-2008, 06:53 PM
 
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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.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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