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Discussion Starter · #1 ·
I am just soooo burnt out right now, from a lot of stuff. Right now, though, I just wish I could hire someone to be the "official dd expert". I had an informal meeting with dd's teacher for next year, and she wants to know everything -- which is great, but *I* don't know the answers! It happens all the time with dr's, too, because dd's condition is so incredibly rare, so of course no one has ever seen it before and they think I'm supposed to know everything about it.<br><br>
Am I the only one who ever gets tired of having to know everything all the time?
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/wave.gif" style="border:0px solid;" title="wave"> I hear ya, sister. I need to have my brain cloned in case I ever die. Bleah.
 

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Wow!! All of the time. I know that children do not come with an instruction book, but sometimes I wish that dd at least came with SOME instructions<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">. It can be very frustrating at times.
 

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I would LOVE LOVE LOVE to find someone who had all the answers for DS1 ... and who was actually right about everything ... but I'm not holding my breath.
 

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Yes I do - especially when going through a transition time like now where I have no idea what direction to go in with him. And the supposed experts are saying "well, we'll follow your lead!" <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:
 

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I love <i>knowing</i>, but I do get tired of explaining what I know to people whom I pay to help with it when they don't know.
 

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Yes I sometimes get tired of explaining, but on the other hand I am glad that I can make people more aware of EE. Her condition has stats of only 1 in 10,000 kids so I don't expect them to be experts on it when they have such a broad spectrum of patients. I am going to attend a national conference in July where there will be leading doctors, researchers, and other parents going. I hope to learn the latest so that I can pass it on to her doctors.
 

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Yes! Every therapist we've met with so far has just stared at me with a blank look when I tell them Sarah has Cornelia de Lange Syndrome. I even had to provide info for our peditrician who had never heard of it. I have copies of brochures and flyers now and also copies of the CdLS growth charts.<br><br>
We went to a CdLS Awareness Day picnic in CT last weekend and it was so awesome to be surrounded by all those other families and see other kids that have it.
 

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YES!!!!!!!!!!!!!!!!!!!! STBX uses this excuse all the time: " You're the one that knows all this stuff, I have no idea what they are talking about"<br>
Well geez, I guess that's because I'm the one with the uterus and the SN fairy only comes to ME to magickally grant me all the information I need. She shoves it into my brain osmotically while I sleep. NOT!!!!!<br>
You'd think these people could visit a website or pick up a friggin book every now and then, but that's to hard. It's so much easier to just rely on good ol' Dr. Mom to provide all the answers so that they don't have to do any work. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:<br>
(sorry for the snark but I have heard theat phrase from STBX so many times lately that I am seriously ready to grab the nearest book on autism that I have and shove it up his nose!)
 

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Discussion Starter · #12 ·
The thing that really irks me is when I'm sitting with dd in a room full of "experts" (the doctors irritate me the most, I think) and there's this whole attitude of "gosh, we have no idea. What do <i>you</i> think we should do?" I have recently pointed out to several physicians that I did not, in fact, go to medical school. That I don't WANT to go to medical school. That I come to them because the DID go to medical school, and theoretically, they should have left said medical school with oh, I don't know -- some medical knowledge!<br><br>
Dd's condition affects every major body system, and most of the minor ones. I consider myself an expert on kidney disease, at this point, and am happy to be one. But I can't also be an expert on lung disease, growth issues, immune function, genetics, bone structure and blindness.<br><br>
At dd's last team meeting, one of the therapists said, "so, do lots of children with her condition have reduced finger sensitivity?"<br><br>
Umm . . . there AREN'T any other children with her condition. So, sorry, can't help ya there. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">:
 
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