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  #1  
April 23rd, 2009, 07:46 AM
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Because Cooper "looks" normal, I get the comments from family/friends & strangers that he's fine... they assume that b/c he is walking & what not, he's okay. They don't see the "real" issues. I am tired of explaining the SN of my DS to everyone, especially those who know me well, like my MIL, she'll say "what's REALLY wrong w/ him"... I hate that. I mean, seriously, if you aren't going to take the time to listen to me the 1st time, why should I continue to explain myself? I also get the attitude that "oh he's fine" and assume that he can go to a place or do something, when in fact, he cannot, like a park, he can't do it w/ out one-on-one supervision, so for me to go to a park & let him play & chat w/ other mothers, I can't...he would get hurt b/c of his low-tone & falling all the time.

Are people just ignorant or are they in denial? Just curious on your take for this.

~Chantelle


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  #2  
April 23rd, 2009, 08:48 AM
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Honestly, I think they're just ignorant...not in a negative way, either. They just honestly don't understand. So often, with special needs, people think it's all visible and obvious - so if a kid looks normal, then all must be well. They don't take into account immunity concerns, low tone, delays, etc. It's hard for people who haven't been so surrounded by it to understand. We are living it - therapies, extra appointments, special tests, it's all part of our life so it's easy to forget (for me, at least) that to someone on the outside who isn't doing all of that Danny seems like any other kid.
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  #3  
April 23rd, 2009, 09:08 AM
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I had to laugh. Not AT the situation, but because we get this all the time. My SIL's mother is *extremely* religious, and thinks that because she's praying for Milo, he'll grow to be 6'5" like my dad. Um...it's a form of dwarfism...don't think that's going to happen. Hehe. People say stuff like that all the time to us. We don't care about his size so much-his health is obviously the most important. There are some things that have already helped, some things that will go away with time, and other things that will just get worse. I don't think that anyone realizes that it's a battle. A constant, round-the-clock battle. You don't get remission with syndromes, permanent disabilities, etc. It's just ignorance, just because they haven't dealt with it.

I do have something that gives me hope. I had the best run-in yesterday. I was in Costco (which is a way for me to take a break-a couple of hours walking the aisles, Kannon usually asleep, getting shopping done, and then back home to start therapies, etc.), and some woman wanted to look at Milo. Our conversation led all over the place, but the basics: she was a teacher who had had a child with dwarfism in one of her classes (not the rare kind, but still, someone who was small with extra needs). She told me how she and the other kids had to do different things, but ultimately, no one treated the little girl any differently. She happened to mention that BOTH of her sons have CF and are 28 and 30. I nearly cried. I'm doing all the stuff for Milo for CF and other lung problems right now. She and I talked for a long time, and I felt like she was the first person I've run into who "gets it." She knew the sleepless nights, wondering if your kid is going to make it, wondering about the future, avoiding other parents' talking about milestones, etc. Luckily, we were in an out-of-the-way part of the store, because I started sobbing at one point. She didn't even blink. She just understood. We both needed that.

Anyway, the point is, most people will never get it, but when you finally meet the people who DO understand, you don't have to apologize, make excuses, explain everything, feel embarrassed, etc.

Which is why I love this board.
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  #4  
April 23rd, 2009, 11:38 AM
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I know, I guess not dealing w/ it daily you can't get it. Also, not talking about it, it's not real (my DH & my family). I hate that.

Aside from my DS being SN, I am handicap, I have to walk w/ a cane from time to time, been disabled for a while. It stinks & it makes it hard for me to do things but the stroller is like my walker. Again, people look at me & think "why is she parking in handicap? she doesn't look like she's handicap"... I had a lady once look at me & say "you don't look handicap"... and I said "if I wasn't, I wouldn't have a lisence that said I was"...then she said "this is probably not your van, you don't look disabled"... I said "well that's ironic, because you don't look stupid...." I was angry but at that point, felt the need to say something in return. When I see people parking in handicap spots w/ out a placcard or licesence plate, I get angry & I say "uhm... those spots are reserved for those that MEDICALLY need it...." of course they ignore me. But seriously.

Again, looks are deceiving. If I looked crippled, would that make them happier? I don't care for that judgment.
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  #5  
April 23rd, 2009, 01:28 PM
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People do ask me, alot, why Joey has a mask on. I don't have a problem with that because I know that LCH is not something that people know about and i use it as an opportunity to educate. But I do have problems with people who look at me and say how its not cancer so its gotta be so much easier for us or who tell me he looks so healthy that he couldn't possibly really be on chemo. Or people who tell me I shouldn't have hiom outside at all if hes on chemo.
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  #6  
April 23rd, 2009, 01:47 PM
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I honestly ignore people. Either our kids don't look sick enough, they shouldn't be out b/c they look too sick or people overreact b/c they think our kids are contagious. Everyone is so quick to judge. It's really sad. Why can't people be nice and just ask questions for the sake of understanding? IMO, family can be the worst.
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  #7  
April 23rd, 2009, 05:06 PM
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I get a lot of the "he looks fine" or the worst is "one day it will all work itself out" i'm too practical to go that route. and strangers dont bother me, its family that annoys me.

or how bout this one. Feeding him food he is allergic to. like sneaking it behind my back. Like i wont know later when's he's miserable. I dont get that at all.
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  #8  
April 23rd, 2009, 07:38 PM
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Quote:
Originally Posted by blundoboys View Post
Because Cooper "looks" normal, I get the comments from family/friends & strangers that he's fine... they assume that b/c he is walking & what not, he's okay. They don't see the "real" issues. I am tired of explaining the SN of my DS to everyone, especially those who know me well, like my MIL, she'll say "what's REALLY wrong w/ him"... I hate that. I mean, seriously, if you aren't going to take the time to listen to me the 1st time, why should I continue to explain myself? I also get the attitude that "oh he's fine" and assume that he can go to a place or do something, when in fact, he cannot, like a park, he can't do it w/ out one-on-one supervision, so for me to go to a park & let him play & chat w/ other mothers, I can't...he would get hurt b/c of his low-tone & falling all the time.

Are people just ignorant or are they in denial? Just curious on your take for this.

~Chantelle


To the bold, we have that same issue. It's nearly impossible for us to go to the big park without DH. I have an over-active 2yr old and a 5yr old that has to be helped and watched constantly (Kyle has a low-tone version of CP). We're getting our own playset this year because of it.

I do have some of what you're talking about - but the most annoying thing I deal with is people asking when he's going to eat - or why don't I just try x, y, z. The x, y, zers are the worst... I just feel like saying - thanks for the advice - what would I do without your vast experience and knowledge in all things Kyle... Because you have SO MUCH knowledge in health related feeding disorders and low tone oral motor delays. What with all your children that are perfectly healthy and absolutely no education in this field. But I digress...
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  #9  
April 24th, 2009, 09:18 AM
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Family "IS" worst.... my grandmother will ask me how Cooper is doing. I'll tell her the truth, meaning, not that great at the moment...or that he needs another surgery, something along those lines & you know what she says? "I'm glad everyone's fine"... and then hangs up. As if I just said my son was fine? ***? I didn't say that. In fact, I said the complete OPPOSITE of fine. Yet she says "fine"...

My 8 year old "had" sensory intergration dysfunction for a long time, he still has the occasional texture issues but he's doing better. Cooper, my SN child, is FANTASTIC at eating, eats everything & anything, doesn't matter what it is, if it's new, he eats it & loves it.

My 15 mos. old, has the SAME freaking problem as my now 8 yr' old, he wont eat solids & has severe allergies, and is still on Alimentum formula. He's being interviewed by the E.I. department next week for his eating problems. I waited too long for my 8 year old before I knew what was wrong w/ him & ended up struggling until he was 5-6 before things got "better". I don't want to wait w/ Teighan, if I can do something about it NOW, then that's what I am going to do. It's not my first rodeo, I know how to introduce foods to a child/baby, but if I mention these issues about my son to my family/friends, they say "have you tried..." or then I have them giving him a solid food & he will vomit & start to choke, I mean c'mon! Did you not just hear that he can't eat solids? That he vomits & chokes? What part of that wasn't I clear about?

Sigh... sorry... I know I am being negative right now, I am frustrated w/ ignorant people who brush it off. And yes I often get "it will all work out in the end" crap too. Just love that one. I've heard it all. Or "ohhh... I am so sorry"... like I just had a death in the family, like the pitty thing. It's not a bad horrible thing either, it's not great, I didn't plan this for my DS but he's not dead, why do they say that?

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  #10  
April 25th, 2009, 09:00 AM
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Quote:
Originally Posted by blundoboys View Post
Family "IS" worst.... my grandmother will ask me how Cooper is doing. I'll tell her the truth, meaning, not that great at the moment...or that he needs another surgery, something along those lines & you know what she says? "I'm glad everyone's fine"... and then hangs up. As if I just said my son was fine? ***? I didn't say that. In fact, I said the complete OPPOSITE of fine. Yet she says "fine"...

My 8 year old "had" sensory intergration dysfunction for a long time, he still has the occasional texture issues but he's doing better. Cooper, my SN child, is FANTASTIC at eating, eats everything & anything, doesn't matter what it is, if it's new, he eats it & loves it.

My 15 mos. old, has the SAME freaking problem as my now 8 yr' old, he wont eat solids & has severe allergies, and is still on Alimentum formula. He's being interviewed by the E.I. department next week for his eating problems. I waited too long for my 8 year old before I knew what was wrong w/ him & ended up struggling until he was 5-6 before things got "better". I don't want to wait w/ Teighan, if I can do something about it NOW, then that's what I am going to do. It's not my first rodeo, I know how to introduce foods to a child/baby, but if I mention these issues about my son to my family/friends, they say "have you tried..." or then I have them giving him a solid food & he will vomit & start to choke, I mean c'mon! Did you not just hear that he can't eat solids? That he vomits & chokes? What part of that wasn't I clear about?

Sigh... sorry... I know I am being negative right now, I am frustrated w/ ignorant people who brush it off. And yes I often get "it will all work out in the end" crap too. Just love that one. I've heard it all. Or "ohhh... I am so sorry"... like I just had a death in the family, like the pitty thing. It's not a bad horrible thing either, it's not great, I didn't plan this for my DS but he's not dead, why do they say that?
EXACTLY. To all of it. "It will all work out" is what really bothers me. I know that I vent a lot on here, but I don't do it in person much. I actually don't do it on here as much as I need to, or nearly as much as many other people would. Part of it: I never wanted to be a burden. Then, when I realized that everyone needs to vent, I did a few times, and because no one would know what to say, I'd just hear that phrase. Now, if I do it, I either hear, "It will all work out in the end," or, "Glad everything is ok," or, "So nothing's changed?" and moving on to another subject...and on and on and on. I feel like, in general, I get no consideration. I know that it could be because I really DON'T complain, and people assume that things must be fine. But people were doing this right after he was born. I was just sobbing because we didn't know if he'd live. I got so tired of, "Crying won't solve anything," "You're emotional because of the hormones," "It will all work out," "Everything happens for a reason," and so on. I was just dying for one person to say, "Yes, this sucks. I'm so sorry," and just let me cry.

Sorry for another rant. This is all a daily battle for me and for all of us, I'm sure. I always wonder why I give so much consideration and support to others who just don't seem willing to do it for me, my kids, etc.

I'm also exhausted and should just keep my mouth shut today.
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  #11  
April 25th, 2009, 02:47 PM
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I know what you mean. Cooper was born "deaf"...then the Otolaryngologist from Children's Hospital confirmed the "same" diagnosis... my family said "he can hear"...NO HE CAN'T!!! When we got the hearing aids, I tried showing my DH, family (people who would be around him) how to put his hearing aids on & off. They refused b/c they said they didn't want too or couldn't be bothered & that I knew better how to do that. Excuse me? So, let's just let Cooper not hear anything b/c your lazy butt doesn't want to be inconvenienced w/ putting hearing aids on the child. Nice... really nice... my DH even did that. I thought to myself "how would you like it? not to hear but could hear something w/ hearing aids but daddy & grandma are too freaking lazy to put them in so he'll just sit there & not be a part of the family b/c you can't be bothered". That's a load of you know what.
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  #12  
April 27th, 2009, 10:19 AM
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I just want to say we can relate, I get lots of the "see I told you he could be fine" now that he is mobile, crawling and acting a tad like a toddler. Uhm, he's not fine, he has TONS of health issues, his brain will not allow his muscles to develop normally (low muscle tone), he may never speak and he has some form of mental retardation. They act like "just keep up the good work and he'll be fine"

UGH, I think they are just trying to make me feel better, but it doesn't because they aren't being realistic.
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  #13  
April 27th, 2009, 10:42 AM
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I get that all the time with both of my kids. My 4 year old has autism, and I get the whole, "He'll grow out of it, he is just a slow learner, he is just quirky, etc". You name it and I have heard it all. My family was very supportive but his dad's family stayed in denial for quite a while, and I am still not sure if they are still in denial or not. His dad was in the room when he was diagnosed and is still in denial most of the time. Thank fully he doesn't take my son all that often.
My 3 year old, niece I have had since she was 9 months old, has fetal alcohol effects. I have heard everything from she is just very active and defiant to she is only 3 how do you expect her to act. Thankfully she doesn't have many of the facial characteristics that go along with the disorder.
As for ignorant people, it's hard. Some people will ask questions and others will just stare at me as if I am the worse parent in the world because one of my kids is having a meltdown from being overstimulated. I don't mind answering questions because it gives me the chance to educate others on both disorders, but I absolutely hate it when people just stare.
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  #14  
April 28th, 2009, 07:27 AM
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UGH, I think they are just trying to make me feel better, but it doesn't because they aren't being realistic.
Exactly... you don't want fluff & false promises, give me the truth, grieve w/ me if you need too, but don't pretend it doesn't exist, don't pretend you don't see the LARGE PINK ELEPHANT in the room, b/c it's there.
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  #15  
April 28th, 2009, 07:39 AM
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Originally Posted by kittycat View Post
The x, y, zers are the worst... I just feel like saying - thanks for the advice - what would I do without your vast experience and knowledge in all things Kyle... Because you have SO MUCH knowledge in health related feeding disorders and low tone oral motor delays. What with all your children that are perfectly healthy and absolutely no education in this field. But I digress...
I think we've talked about this before, but YES - that's the one that drives me insane. Because no one but DH and I have been the one's that have been puked all over, have been up all night with him when someone presses him to eat something he's not ready for, etc etc. But they've got all the answers for us, all we need to do is take Matthew out in public and we'll get them.

Quote:
Originally Posted by ~~~Sara~~~ View Post
I just want to say we can relate, I get lots of the "see I told you he could be fine"
That's frustrating to me too. Matthew is overall 'normal' right now - but no one understands that CP doesn't just go away and that while things are great now, YES we still need therapy, YES we still go to lots of dr. appointments, YES we are still very very careful to observe every move he makes. That's why he's made the recovery he has (keeping in mind our CP is mild and we were fortunate that therapy provided a great deal of recovery in our situation) and why he's not having more problems than he is - because I have been totally obsessive about monitoring every milestone he hits and everything he does. So DO NOT tell me to 'just relax' and 'stop worrying' - it will never happen, the only thing that's likely to happen is you won't be around in my life to see it happen because I don't need the negativity.
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  #16  
April 28th, 2009, 08:31 AM
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Ugggh, don't get me started on people who refuse to accept diagnoses! It was three freaking MONTHS after Danny's diagnosis of deaf before people stopped saying "Look how he tracked to your voice when you talk to him! They must be wrong!"

I really am glad this board has picked up some. I've always felt kind of, I don't know, jaded or something because no one seems to understand that just because Danny is "only" a few months delayed right does that does NOT mean that everything is over and he's fine. There is so much that could yet reveal itself, because he's so young - the last thing I want to hear are platitudes and cliches. Deb, you said it so well - we WON'T stop worrying, it just won't happen.

Ugggh, don't get me started on people who refuse to accept diagnoses! It was three freaking MONTHS after Danny's diagnosis of deaf before people stopped saying "Look how he tracked to your voice when you talk to him! They must be wrong!"

I really am glad this board has picked up some. I've always felt kind of, I don't know, jaded or something because no one seems to understand that just because Danny is "only" a few months delayed right does that does NOT mean that everything is over and he's fine. There is so much that could yet reveal itself, because he's so young - the last thing I want to hear are platitudes and cliches. Deb, you said it so well - we WON'T stop worrying, it just won't happen.
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  #17  
April 28th, 2009, 12:13 PM
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What really bothers me lately is people hear that Joey's on "maintenance" and think it means remission. They think all is well and its NOT. There is still a mass. There is still active disease, but it is improved. And the fact is, there is really no true remission because remission means the disease has left and with LCH kids the disease itself NEVER leaves. It is always dormant in his body when it is not active. And when we started this whole journey I was the one who was told "80% of kids respond to treatment but he is at higher risk for not responding because of his age and the organs involved". Yet everyone else was telling me he would respond and I knew he might and might not. And now I know there is a 46% chance that once we force this disease to no Active disease it will reactivate. I want to cling to the 54% chance he will stay but I have to be vigilant to remember the 46% chance it won't. And the lung issue. No one gets why i worry about his lungs ALL THE TIME> HELLO people, he had disease ON HIS LUNGS, it nearly closed his airway. Now he has airfilled cysts on his lungs. I don't even KNOW what this means for his future. So excuse me if I choose to panic if he seems to have a cold or if there is excess ear wax (another sign of active disease). Excuse me if I worry about how much he drinks and eats and what his poop looks like because he could get GI involvement, he could get Diabetes Insipidus, he could get C-Diff infection. Pardon me if you want to believe everything is rosy and perfect and that i am an overprotective mom who is jumping at everything. I am doing the only thing I CAN do to make sure that Joey can be declared no Active Disease AND STAY THAT WAY.

OK, I've obviously been carrying that around for a while...
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