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Could someone please validate my feelings?


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  #1  
August 27th, 2007, 08:56 AM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,642
I am so hurt and angry right now. My son has optic nerve hypoplasia and I believe that most of his problems are related to his optic nerve hypoplasia but everyone in my life treats me like I am stupid and in denial. They think that he has autism and am just in denial. I think this is because you can't tell he has vision issues anymore. He walks around and you wouldn't know he ever had issues if you didn't know. I know Brandon has been diagnosed with an ASD but I truly believe that his autism symptoms are completely related to his ONH. Nobody wants to hear that. I have read on ONH and a lot of the kids have the same autism type symptoms. I guess because he doesn't have a diagnosis of SOD I am just in denial. But I really don't believe I just imagined all his vision issues and that they are unrelated. I am so tired of defending myself. Nobody really understands how I feel because ONH is such a rare disorder than nobody really knows that much about it not even my doctors.

I am having a bad day. Sorry.
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  #2  
August 27th, 2007, 09:48 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Quote:
I am so hurt and angry right now. My son has optic nerve hypoplasia and I believe that most of his problems are related to his optic nerve hypoplasia but everyone in my life treats me like I am stupid and in denial. They think that he has autism and am just in denial. I think this is because you can't tell he has vision issues anymore. He walks around and you wouldn't know he ever had issues if you didn't know. I know Brandon has been diagnosed with an ASD but I truly believe that his autism symptoms are completely related to his ONH. Nobody wants to hear that. I have read on ONH and a lot of the kids have the same autism type symptoms. I guess because he doesn't have a diagnosis of SOD I am just in denial. But I really don't believe I just imagined all his vision issues and that they are unrelated. I am so tired of defending myself. Nobody really understands how I feel because ONH is such a rare disorder than nobody really knows that much about it not even my doctors.

I am having a bad day. Sorry.[/b]
I completely understand. As you know Alexis has SOD, but as with Brandon, her vision issues are not as noticable either. I was so mad about a month ago when we were going through the evaluations for Alexis' kindergarten placement. OUr disctrict pyscologist is a ##### and wanted to pass Alexis off to someplace else because he did not want to deal with the autistic like tendencies. When he came in to do her pyscological eval, he spent less than 20 minutes with her, gave her an IQ test that was completely based on vision and made no allowances for her visual impairment, ignored the input from her 1-1 aide, all of her therapists, and her teachers. After that, he said his time would be better spent finding a more appropriate placement than the 12-1-1 setting in our school district. 5 days later when we had our meeting, my husband and I brought up 4-5 different programs and he knew nothing. He just decided that because there are autistic like tendencies with ONH/SOD he did not want to deal with it.

I KNOW that autistic tendencies are present in children with not just SOD, but with ONH as well. You are not stupid and you are not in denial. Unfortunately, with how rare both ONH and SOD are, doctors just don't know everything. I have done so much research into ONH and SOD that I know more about the condition than her pediatrician and most of her therapists. Before coming here, I have only heard of 2 other children with ONH or SOD. One was a friend of a friend whose son's son was diagnosed with SOD, but the child is living in california with the mother. And on Friday I got a call from Alexis's case worker with the Commission for the blind and visually impaired that one of his new cases was a child with SOD.

I also find it so frustating to continually defend myself and my daughter. It seems that no one really cares what I have to say, regardless of the fact that I know more about what's going on than they can ever hope of knowing. It just annoys me that people who have no idea what is going on make snap judgements, and then expect them to be true. When they are not true, they don't want to hear the truth.

I have had many bad days with Alexis's diagnosis. The district pyscologist is just one of them. But I look at my daughter, see her laugh or smile and realize that I know what is going on with her and while everyone may think I am stupid or in denial, I KNOW I am not. Hang in there. You are not stupid and you are not in denial, if that was the case, than I am stupid and in denial with you. Although, at least there would be two of us then
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  #3  
August 27th, 2007, 09:51 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
You are NOT in denial... I know compared to most Nathan's vision problems aren't that bad... but he has had other health issues due to him being born so prematurely..
I think people just don't realize how hard it is number one to have a child with special needs, and two-- it makes that much worse when they see the child as *looking or acting normal*.... people look at me in disbelief when I have to fill out medical history forms and put Nathan has ROP (retinopathy of prematurity) BPD (bronchopulmonary dysplasia), that he JUST came off of oxygen in April after catching RSV in Feb...
no-one sees what WE see in our children because they don't know what they are looking at like we do! lol
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