Another Diagnosis


Le sigh.

Life.

Sigh.

My daughter went through a round of neuropsychological testing to figure out some more things about my little Princess.

If you aren't familiar with Neuropsychology here's a description from Barrow Neurological Institute (where she had her testing)

Neuropsychology is the interdisciplinary branch of psychology that deals with the relationship between the nervous system (especially the brain), and mental functions such as language, memory, and perception.

Clinical neuropsychologists have extensive knowledge of the brain; use neuropsychological tests to accurately assess cognitive deficits; and practice the treatment and rehabiliation of brain injured and neurocognitively impaired patients



Pretty much what Dr. Fulton told me was pretty much expected. Emma's strengths are her personality and loving nature and (this is me, not the Dr) her strength and determination. I haven't really been around "normal" 7 year olds. I am not sure WHAT "normal" is for her age group. I know she's delayed but not sure to what extent. I think her speech is awesome (granted, I also went from having a child who barely started speaking at the age of 4) and her vocabulary is amazing. It is. Relative to how it was. She has global delays (speech, fine motor, visual, spatial, overall motor skills) which is not surprising and she is at the functioning level of a child who is 3.5-4 years. Good thing that is what I guessed, huh? He also did give her a diagnosis of "Moderate Mental Retardation". I am also not surprised. Also, the fact that I was pretty much aware of the reality of where she is, it doesn't lessen how much it hurts to hear. I know she's mentally challenged. I know... but... it pisses me off. She WASN'T BORN LIKE THIS! If somebody didn't think they could play judge and jury, my daughter would be FINE. She wouldn't be spending her childhood going through therapy, special education, training programs and a constant barrage of doctors and testing. She would be allowed to be a LITTLE GIRL. She should be going to Girl Scouts! She should be getting into shenanigans with other little girls her age. Instead... she's trying to learn to talk more clear, to walk with her left foot straight and to learn how to make her left arm work...

There are good things out of this. The Dr. will talk to Emma's 3rd grade teachers and discuss her and how to handle her. This will also help carry more weight with keeping the services SHE NEEDS to have in order to reach enough independence in her life and my life. I know she will always be at home with me... I know that. I just need to know she can take care of herself at some point. Ohhhh my little sweetheart. How I wish I could make things alright for you...

Anyways, he also recommended a book to me called the "Explosive Child" by Ross Greene. Can't wait to read it. I ordered it on Amazon.com

Also, I made a pledge to help end the "R" Word. People so flippantly use the word "Retard", "Retarded" and don't realize that you are beating down an entire population that have no control over the fact that they are "MENTALLY RETARDED". That word wasn't always bad. In fact, groups fought to get it included instead of their children being called imbeciles, but now... it's used as an abusive derogatory term. Emma is "moderately mentally retarded". She didn't ask for this. She wants to be accepted and loved. That's it. The fact that society has made it so easy to throw this word around, it makes it easier for people to become desensitized to it and less tolerant towards those who are intellectually challenged. Take the pledge!

http://www.r-word.org/

Here's a GREAT video from the View discussing the "R-Word", which has moved to the level of the "N-word".


5 comments

  1. Jamie,

    I've been the information and research specialist at the National Center on Shaken Baby Syndrome for over thirteen years and came across your blog while watching for SBS related posts online.

    I think many people don't realize all of the challenges faced by survivors of shaken baby syndrome.

    Thank you for sharing a glimpse into your life with Emma.

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  2. Jamie your outstanding and Emma is simply amazing. The Dr.s I am sure had a much worse and grim outlook for Emma, and she has exceeded there expectations, as I know someday Kaileb will. Its weird to read your post and see the good in what has been written maybe cause we are so far behind in the process non the less it is captivating and uplifting for me and me personally to read about all of Emma's accomplishments, her personality, her behaviors (lol) and choice words :) she keeps me smiling and going on through your words. So Thank you. Our kids are amazing and I can at this point only hope that Kailebs news is as good as Emma's news. And that I can some how help someone else like you and Emma have helped me and my battle to make Kaileb be the best little dude he can be.

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  3. I just wanted to thank you for all the posts and information you put out there for us to read and watch. I'm going to be honest and say I never knew about this condition until I started reading your blog.

    You and your daughter have openened my eyes and I thank you for that.

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  4. @Al- anybody the National Center is welcome to red carpet treatment on my blog :). I think it's important to inform people what we go through, it doesn't end at discharge from the hospital or when court is over... it's forever. Thank you for all your work at the National Center!

    Renee- Hang in there. A lot of work and patience come a long way. I have to say, thankfully, no doctor has ever given Emma a prognosis. No, that's not true, at the time of injury and the first surgery her prognosis was very grim and once she woke up from her coma, her doctors focused on the here and now and getting as healthy as possible. I am very lucky to have so many amazing physicians involved in her care. Oh and don't you worry, you WILL be getting reports of kaileb's shenanigans soon enough! LOL

    @Ryan, Thank YOU for reading my blog and being open to taking in the information I share. It means a lot to me that a small peak into our lives has opened up another world for another person. I know you are huge on sticking up for those who are targeted and that makes you a compassionate and caring person, in my eyes, and I am glad that you are aware of what my daughter goes through. Thanks for being an active follower :D

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  5. Oh how frustrating. My background is in neuropsychology. So much can go wrong so easily with the brain. People don't realize what can happen in a split second. She's an absolutely beautiful little girl! Sounds like you're a very caring parent too :-)

    Stopping by to say thanks for entering my green giveaway!

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Thank you so much for saying hello! I love your comments.