I don't post here hardly at all but I need advice
Lucy has ONH in her right eye and because of this has a smaller right eye, like half the size of her left eye.
She also has displasia, so her eyes flicker back and forth sometimes, usually when shes having a hard time focusing it seems (it doesn't act up at all when shes watching a movie or TV but usually does when we are playing with her)
Here is where I need help. We get random strangers telling us ALL about how they know a person who knows a person who has a lazy eye, and all the wonderful ways that we can go about our lives to fix it....Sometimes I just don't have the energy to correct them, but then other times when I do, I feel like I get suckered into these terribly long conversations on her conditions etc. I also cannot STAND when people bring up her physical abnormalities.
How do you all cope with this??
Re: I don't post here hardly at all but I need advice
You know, it's hard sometimes, especially when you just want your child to feel normal and fit in. DS wears glasses, the big Solo Bambini ones that are very, very noticable, and people always come up and ask questions. DS also has a lot of scars on his head from the many brain surgeries he has and that always brings looks, as does the bruises on his thighs from where he gets twice daily lovenox injections. The worst comments always come from kids... "Look mama, that baby wears silly glasses and has nasty boo-boos on his head..."
The question that really kills me though is, "Are those REAL glasses????" I've been very kind most times, but what I really want to say is "Well, yes moron, they are real. Do you think we'd make our two-year-old son wear glasses for fun??" I also love the question that surely follows the first question, "How can they tell that a baby needs glasses?" and then that one is followed by, "Well, how can they get the prescription right without the baby being able to tell you what they can see?" It's annoying to say the least and most times I don't have the energy to go through the whole spill about DH having a hereditary vision condition that DS inherited on top of our DS's brain tumor on his optic nerves, and about how they can check vision on babies, and about how babies do wear glasses, etc., etc. blah, blah, blah.
I guess most people really are well-meaning though. They are curious and I guess sometimes want to be helpful with suggestions. Since they haven't been through it, they don't realize that every well-meaning question just snaps us right back into reality that our kids aren't like everyone elses.
Anyway, no real advice, but just wanted to say I can relate.
DD wears glasses so we get questions ALL the time... and quite honestly, it's never occurred to me to be annoyed by it. As long as I feel the questions are sincere and not sneering (and they've all been thus far), I just answer their questions... invariably, though, that almost always leads to a discussion about her developmental disability and more questions. I'll admit to struggling with those questions, but I'm hoping I'll find a comfort zone with that line of questioning with more time.
Becoming a reluctant spokesperson for the cause is just another side-effect of raising a child with special needs... I totally agree with Auntie- it's not something that's going to go away soon, so you may benefit from finding a way to reconcile the feelings you have about it so it doesn't frustrate you so much.
Good luck!!
Im not here for advice. I opened this post and thought to myself 'OH MY GOSH THAT LITTLE GIRL IS GORGEOUS!!!'. I opened it again, to read responses, and couldn't resist staring at her for a few more moments (my how i wish my DD had hair like that.... so cute!! DD's piggys look like antennae right now) & I decided you needed to know.
We deal more with combativeness on NOT accepting DS's difficulties, and there are no physical markers for autism. Behavioral ones, sure, but at 3 - most people don't really distinguish appropriate from inappropriate at this age. When someone asks questions, it is generally in a very genuine way and I would LOVE for more people to ask me questions. But that's because I guess I feel like they believe me enough to dig deeper. However he did have bilateral (both sides) ear tags (2 each ear, they were huge) and I suffered through more comments than I cared to from little ones and adults. They were removed when he was a little over 2 yrs old.
In the innocence of a little 5 year old girl at the doctor office when DS was around 12 or 13 months old...... "Look! Mommy, he looks like an alien. Little boy, are you an alien?" ...... I felt my heart break. No one will ever know your heartache caused by stares, inappropriate questions, comments, and even innocent ones - unless they've felt it first hand.
I don't have any advice since w/ our condition it's not relavant, but I just wanted to say. I am sorry you have to "cope w/ this" as you put it. as a mother you already has so much to deal w/ then to add the stess of worring what others will say, well that just sucks.
I hope you find a way to cope with it, if not now maybe when she is older she'll be the one to teach you.
Max 4-08-08 and Michael 2-03-91 (19 years olds)
I get this too...sort of.
Since DS has bilateral ONH, he doesn't really make eye contact. He tends to look down or at whatever/just around wherever he wants. People in public are always saying "Oh, he's so tired!" I guess b/c he isn't looking at them? Anyway, I just agree b/c its easier. I say something like "Yup, its naptime." The very rare times when I've just said "He's blind." I get a ridiculous amount of sympathy, which is annoying b/c people act like all hope is lost for my little blind boy. I don't know if this would work for you to just agree about the lazy eye (little white lie) and move on. Maybe I'm just not as a nice of a person as you, but I tend to always look busy so ppl don't tend to get into long conversations. GL!
See sometimes I will agree...I will just say, yes I know and we are getting it taken care of it...I just don't want the sympathy, and I most definitely don't want people to feel sorry for me, or Lucy or treat her differently....
I really wish you and I lived closer!!!!