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I kind of feel

Posted by on Jan. 15, 2013 at 6:39 AM
  • 31 Replies

I kind of feel like the doctors in the neuropsych, behavorial developmental clinic tore my daughter apart, thread by thread!! The meeting seemed to go pretty decent, the doctors seemed understanding so on and so forth.. ok fast forward a week, the reports are in... I was floored by what was said!! everything possibly "wrong" was in black and white, far from nicely stated.. lets see prime example listing examnination: mild facial deformity.. YES DEFORMITY like wtf is that?!! I dont see her as deformed, what the hell are you talking about?!!! noted on her lazy eyes, her prominent forhead vein, refusal to make eye contact, rigid, like, helloooo.... what did you expect? they watched us from a two way mirror, and apparently when they were not in the room izzy socialized well with me, well yes, im her mother! then THEY come in the room, and she shuts down, becomes non verbal lacks eye contact.. um, ok, did you think i was making up her social issues?!!!! Im sorry ladies it was just really hard reading all of this in black and white, put so bluntly... ugh, I know i wont be so angry a little while from now but some of the things said just didnt seem relevant to me.. (like having mild deformities and lazy eyes, well, shes still beautiful, and funny, and loving, ) ugh.

by on Jan. 15, 2013 at 6:39 AM
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Replies (1-10):
charley31
by Bronze Member on Jan. 15, 2013 at 6:47 AM
Hugs to you and Im sorry. I've been there and got a.letter from my sons Dr who knows him very well. The letter was to help get services for my son. When i saw the letter I cried. To see it in black and white for some reason really was hard on me. His Dr wrote "my son is not only very violent...but he enjoys being violent". I agreed with the letter but to have someone else say it i just got upset. My husband looked me like i was crazy...the letter is true why are you sad. After a few daas i felt a little better. So i do in a way understand and i hope you and your daughters are well. Hang in there.
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icn_mom
by Member on Jan. 15, 2013 at 7:22 AM


Quoting charley31:

Hugs to you and Im sorry. I've been there and got a.letter from my sons Dr who knows him very well. The letter was to help get services for my son. When i saw the letter I cried. To see it in black and white for some reason really was hard on me. His Dr wrote "my son is not only very violent...but he enjoys being violent". I agreed with the letter but to have someone else say it i just got upset. My husband looked me like i was crazy...the letter is true why are you sad. After a few daas i felt a little better. So i do in a way understand and i hope you and your daughters are well. Hang in there.


I just felt floored,, i know she has ASD as she was diagnosed in 2010, but the other things were like ummm wow, I never looked at my daughter that way.. i dont even know what deformities they are talking about, but they strongly urged we keep our appointment with genetics (which i intended anyhow lol). also for so long ive felt that it was just me seeing things.. i dont get any ill reports from her school (though her report card does reflect social issues and emotional reactivity) but no violent streaks or anything like what happens at home. but when the doctor also noted that she was basically "anti social" with the others in the room I was like, wow, so its not just me seeing it to that extreme!!!

lucasmadre
by Kari on Jan. 15, 2013 at 7:40 AM

Often they don't see our children as little people, they seem them as cases. The medical profession needs a good kick in the ass and we are the ones to do it. When they are inappropriately insensitive we have to speak up and give them that feedback. Your little girl is beautiful inside and out and you have to look at the medical evaluation as just that, one perspective, not the whole perspective.

I am soo very sorry that they were so insensitive. Inexcusable...I think they become immune to the impact they have on people.

Why don't you write them a letter about how the eval made you feel, even if you don't send it writing it will make you feel better. There is so much room for improvement in this relatively new field and we are the ones who will make the change, it won't be the medical profession.  xoxo your daughter is perfect and beautiful....perfect!!!

icn_mom
by Member on Jan. 15, 2013 at 8:25 AM


Quoting lucasmadre:

Often they don't see our children as little people, they seem them as cases. The medical profession needs a good kick in the ass and we are the ones to do it. When they are inappropriately insensitive we have to speak up and give them that feedback. Your little girl is beautiful inside and out and you have to look at the medical evaluation as just that, one perspective, not the whole perspective.

I am soo very sorry that they were so insensitive. Inexcusable...I think they become immune to the impact they have on people.

Why don't you write them a letter about how the eval made you feel, even if you don't send it writing it will make you feel better. There is so much room for improvement in this relatively new field and we are the ones who will make the change, it won't be the medical profession.  xoxo your daughter is perfect and beautiful....perfect!!!

i know its their job to point things out and get questions answered and i appreciate that they work so hard for my daughter and I, I guess its me just trying to wrap my mind around things.. I appreciate the fact that there are moms out there that understand where I am coming from and can validate my feelings :) I do take time vent so I dont feel like im going to implode! :)

Macphee
by Bronze Member on Jan. 15, 2013 at 9:03 AM
2 moms liked this
I'm so sorry that you had to go through that. Medical terms can be brutal.
When we went to the geneticist, same thing happened. My son was short, skinny, classic pixie face. Dangling earlobes, prominent forehead, pointed chin. I always thought him handsome. He even has wolf grey eyes and a dimpled chin like John Travolta.
Evidently, he inherited all recessive genes.
I felt like he was like a mutt at a dog show.

I made a rule, read it two weeks later. Also remember, if providers make her diagnosis embellished, she will get maximum services. If it sounds as if it is mild, she'll get less services.

Think of it as saying what it takes to get her what she needs.
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icn_mom
by Member on Jan. 15, 2013 at 9:12 AM


Quoting Macphee:

I'm so sorry that you had to go through that. Medical terms can be brutal.
When we went to the geneticist, same thing happened. My son was short, skinny, classic pixie face. Dangling earlobes, prominent forehead, pointed chin. I always thought him handsome. He even has wolf grey eyes and a dimpled chin like John Travolta.
Evidently, he inherited all recessive genes.
I felt like he was like a mutt at a dog show.

I made a rule, read it two weeks later. Also remember, if providers make her diagnosis embellished, she will get maximum services. If it sounds as if it is mild, she'll get less services.

Think of it as saying what it takes to get her what she needs.

 this is my baby girl.. i just dont see where they see "dysmorphic features"

Macphee
by Bronze Member on Jan. 15, 2013 at 9:30 AM
What a beauty!
Seriously, the deformation must be their vision.
She really is gorgeous


Quoting icn_mom:



Quoting Macphee:

I'm so sorry that you had to go through that. Medical terms can be brutal.
When we went to the geneticist, same thing happened. My son was short, skinny, classic pixie face. Dangling earlobes, prominent forehead, pointed chin. I always thought him handsome. He even has wolf grey eyes and a dimpled chin like John Travolta.
Evidently, he inherited all recessive genes.
I felt like he was like a mutt at a dog show.

I made a rule, read it two weeks later. Also remember, if providers make her diagnosis embellished, she will get maximum services. If it sounds as if it is mild, she'll get less services.

Think of it as saying what it takes to get her what she needs.

 this is my baby girl.. i just dont see where they see "dysmorphic features"


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icn_mom
by Member on Jan. 15, 2013 at 9:36 AM
1 mom liked this


Quoting Macphee:

What a beauty!
Seriously, the deformation must be their vision.
She really is gorgeous


Quoting icn_mom:

 


Quoting Macphee:

I'm so sorry that you had to go through that. Medical terms can be brutal.
When we went to the geneticist, same thing happened. My son was short, skinny, classic pixie face. Dangling earlobes, prominent forehead, pointed chin. I always thought him handsome. He even has wolf grey eyes and a dimpled chin like John Travolta.
Evidently, he inherited all recessive genes.
I felt like he was like a mutt at a dog show.

I made a rule, read it two weeks later. Also remember, if providers make her diagnosis embellished, she will get maximum services. If it sounds as if it is mild, she'll get less services.

Think of it as saying what it takes to get her what she needs.

 this is my baby girl.. i just dont see where they see "dysmorphic features"



awww thank you i thought so too. ive always said she is the next top model :)

Macphee
by Bronze Member on Jan. 15, 2013 at 9:40 AM
I have watched every season of top model. One had a girl with Asperger's, Heather. The season they went to China. Top 5 finalists. She was phenomenal, stereotypically the girls picked on her. Anything's possible for your Angel.
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JTMOM422
by Brenda on Jan. 15, 2013 at 9:43 AM

She is beautiful. Love her smile. I agree with the other moms that its hard to accept at first but will help her with services. Wish it didn't have to be that way but unfortunately it seems the only way we qualify for help. Hugs momma she is beautiful

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