June 17, 2011

A vent...

My 5 (soon to be 6) year old daughter has a number of special needs.  One of these is something called Cortical Visual Impairment (CVI).  It basically means her eyes themselves are fine, but her brain doesn't process what she sees correctly (a stroke obliterated her occipital lobe, which processes visual input). 
I know most people have no clue what it is.  But I get tired of explaining it sometimes.  I get tired of trying to explain why one moment she may seem totally blind, and another moment you might not even notice she has any visul impairment at all.  But I do it anyway, because I know most people just don't know, and I try to do it politely and cheerfully.

But what I really hate are people who see her struggling with her vision and make comments to me about how I should get her glasses.

Don't you think that if glasses would do her a damn bit of good that I would get them for her?  Do you think there is ANYTHING I would not do for her?  What's the insinuation here?  That I'm neglectful, and either haven't noticed she's visually impaired, or just don't care enough to get it taken care of?  Or that I'm just stupid?  What?  Even worse is when I charitably explain why glasses will do her zero good and people just huff and look at me like I have no clue what I'm talking about.  She's my daughter.  She's been my daughter for nearly 6 year.  I religiously take her to all of her appointments with specialists, including the pediatric opthamologist who sees her every 6 months.  I know what I'm doing, and I really wish strangers would give parents of kids with disabilities the benefit of the doubt.  We know our children.  We know how to care for them.  No matter how well-intentioned someone's unsolicited advice might be, it's just annoying and frustrating.


Andrea said...

Wow, I'm so sorry you have to go through that...aren't people grand? Aren't their unsolicited, uneducated and unfeeling comments wonderful? Ugh, sorry about the sarcasm, but c'mon! Glasses? "Gee, I never thought of that..you think that might help her?"

I'm sorry, Katie. You are a WONDERFUL MAMA, doing a GREAT JOB with I'm sure a very difficult set of unique challenges with your daughter.

I support you, and the fact that you are tired of explaining her special needs, and even MORE tired of justifying where you are with them.

God Bless! (Oh, and this is the REAL Andrea/Rightthinker..check out my blog to see how my profile was hijacked today..I just never thought anyone wanted to be me. I bet they don't want to wash the floor tomorrow..and the diapers..and cook from scratch for a family of 8! tee hee)

Amy said...

I agree with Andrea, sometimes people just think they know so much better then you on how to care for YOUR children, as a mother to a son with atutism it amazes me what people will suggest that I do for him, I just think to myself REALLY, and surpress the urge to stranngle them. You and your family are in my prayers!!!

Katie said...

Thank you both!!

ccc said...

Everyone thinks they know better than mama.

Too many people want to tell me what to do with our special needs son, or for any of my children. It really irks me that someone will tell me how to deal with my toddler when he is #11. Excuse me, I have done this before.
I am so sorry that you have to deal with insensitive comments. Us mamas have to develop real thick skins!

Amy said...

That must be very frustrating. And awkward/confusing for dd.

Anonymous said...

It can be very annoying when people attempt to interfere in our lives when they don't know the entire story about a certain matter. I'm sorry that you have to deal with certain people's unwanted advice. You are the mother and obviously, you know what's best for your daughter.

I found your blog today through my friend Andrea's blog - I like it. :)