Last ♡ Hope
New Member
Things have been crazy since difficult child was discharged. I feel like home has been going a teeny bit better, only because I've been reading like crazy and feel like I have some strategies now where before I had NONE. School has been the same hell day in and day out.
Our advocate showed up for the family meeting and she was balls-to-the-wall in dealing with the psychiatric hospital doctors on my behalf. I'm so... not assertive. I hate making waves and I avoid conflict at all costs, but it's not serving me or difficult child very well. I need to change that, but in the meantime, having SOMEone in my corner has done wonders for my psyche. She really called them out for not listening to my concerns, telling them that 7 psychiatric hospital stays for a 6 year old, and a list of medications that would rival a 95 year old's, is damn sure a reason to look further and deeper. That none of my requests (brain imaging studies, neuropsychologist, allergies, etc.) were out of line and should be honored. The Dr's were not happy that I brought her along, and were very clear in their opinion that these tests would most likely reveal nothing useful to his treatment. Nonetheless, I got a referral to a local pediatric neurologist.
Well that wasn't good enough for me, so I went to our pediatrician and had my hackles up ready to defend my requests, but I was so nervous when I got in there that the words all just tumbled out randomly. I was so frustrated with myself because I felt like I was ruining difficult child's last shot, but I literally could not think straight. I had YEARS of things flooding out. Finally I shut up and looked up and he had the kindest, softest expression on his face and he just said "I don't know *how* you do it. You tell me what I can do to help you and I will make it happen." I just cried. I left with a referral to an allergist, an MRI being scheduled, and a referral to a pediatrician. neuropsychologist Dr. at University of Minnesota that a mama on here recommended (Dr. Boys) to me.
While I am excited to have these things in place, I am really worried the psychiatric hospital Dr.s are right and none of these things will reveal anything. I'm afraid we'll rule out everything but still not have any answers. And I really just want an answer! Even if whatever it is can't be fixed, I just want to know *what* it is!
Anyway, it's late and I'm exhausted, just wanted to update ya'll and let you know I do still come in here and read sometimes, but mostly I'm reading books off your suggested reading list on my Kindle every spare moment I can claim for myself. Knowledge is power.
Our advocate showed up for the family meeting and she was balls-to-the-wall in dealing with the psychiatric hospital doctors on my behalf. I'm so... not assertive. I hate making waves and I avoid conflict at all costs, but it's not serving me or difficult child very well. I need to change that, but in the meantime, having SOMEone in my corner has done wonders for my psyche. She really called them out for not listening to my concerns, telling them that 7 psychiatric hospital stays for a 6 year old, and a list of medications that would rival a 95 year old's, is damn sure a reason to look further and deeper. That none of my requests (brain imaging studies, neuropsychologist, allergies, etc.) were out of line and should be honored. The Dr's were not happy that I brought her along, and were very clear in their opinion that these tests would most likely reveal nothing useful to his treatment. Nonetheless, I got a referral to a local pediatric neurologist.
Well that wasn't good enough for me, so I went to our pediatrician and had my hackles up ready to defend my requests, but I was so nervous when I got in there that the words all just tumbled out randomly. I was so frustrated with myself because I felt like I was ruining difficult child's last shot, but I literally could not think straight. I had YEARS of things flooding out. Finally I shut up and looked up and he had the kindest, softest expression on his face and he just said "I don't know *how* you do it. You tell me what I can do to help you and I will make it happen." I just cried. I left with a referral to an allergist, an MRI being scheduled, and a referral to a pediatrician. neuropsychologist Dr. at University of Minnesota that a mama on here recommended (Dr. Boys) to me.
While I am excited to have these things in place, I am really worried the psychiatric hospital Dr.s are right and none of these things will reveal anything. I'm afraid we'll rule out everything but still not have any answers. And I really just want an answer! Even if whatever it is can't be fixed, I just want to know *what* it is!
Anyway, it's late and I'm exhausted, just wanted to update ya'll and let you know I do still come in here and read sometimes, but mostly I'm reading books off your suggested reading list on my Kindle every spare moment I can claim for myself. Knowledge is power.