Hi I'm still here...

Discussion in 'General Parenting' started by Last ♡ Hope, Apr 15, 2011.

  1. Last ♡ Hope

    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. ;)
  2. rlsnights

    rlsnights New Member

    Hang in there. I am so glad you took charge by having your advocate come to the meeting and letting the pediatrician see and hear how impossible things are right now. You did that. Take credit for it. It would not have happened if you had not stood up and claimed your power to get help.

    Glad you feel like you have some strategies to help you manage things better at home. What happens at school is the school's problem - NOT yours. Sounds like he needs one-on-one supervision at the minimum but like I said - that is for them to figure out right now.

    While it can be helpful to have a diagnosis, sometimes you just have to wait for the child's development to unfold and reveal more clues or patterns before it can be clearer.

    I think what's most important is to get some things ruled out - like clearly ruling out seizures/organic brain disorders or other possible medical causes for some of the behaviors. It would also be really helpful if the neuropsychologist or other docs can make some intervention and placement recommendations.

    It's my opinion that genetics can be a powerful player in the way our kids develop - more powerful than most of us would like to admit or acknowledge. If he's like his bio father then your observation about his father may be very helpful. I would be sure to tell the neuropsychologist the ways in which you think your son and his father are similar.

    Thanks for coming back and keeping us posted. And I am so glad that you have found our suggestions and advice helpful.

  3. Malika

    Malika Well-Known Member

    Hey, that's really positive news! Of course the tests will reveal things... how could they not? :) I'm so glad your persistence has yielded results.
  4. TerryJ2

    TerryJ2 Well-Known Member

    I'm with-rls--if you're not assertive, then you deserve kudos for finding and putting in place someone who is. You'll get there!
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Ditto on the genetics. Many adoptive parents have commented to me that once their kids finally me their bio. parents, they were like them to the point of mannerisms and likes/dislikes...regardless of the fact they never met them before and that they did not raise them. I believe that too. Nature is so much more powerful than nurture. In some ways that is a good thing...but if the biological parents are disturbed...not so much.
  6. exhausted

    exhausted Active Member

    Good for you! When we advocate for our kids we are doing what noone else can do-we know them best. You could not possibly ruin any chances. Very few professionals know what it like to parent a "needy" kid. And by the way it's not their call, he is your child. How wonderful your child's doctor was so kind.How wonderful to have an advocate.

    I have the opposite problem as you. I am rather aggresive with advocating for my child and I use to worry about that ruining chances.Now I believe that if professionals dont understand the fears and claws of mama bears they should not be working with children.

    What ever answers you get from the tests will give you a direction to go and that is good. Hugs!
  7. Mamaof5

    Mamaof5 Guest

    *STANDING OVATION FOR MAMA BEAR* A true warrior mama indeed. Be proud, you did it. You stood up for your difficult child and you and got what was needed. Now is a time to lean back and ride out the wave and let the chips fall where they may. Don't second guess yourself at all. The psychiatric hospital docs don't want to do the work involved it seems, but you have stepped up and done that work for them. After all the testing hand it off to the advocate and psychiatric hospital docs and tell the docs do your dang job now, no excuses left for you.

    You go girl!
  8. HaoZi

    HaoZi Guest

    As an adopted kid that met my bio-parents when I was in my 20s, I concur that my experience was similar.

    And go Mama Bear! You'll get the assertiveness down as you watch your advocate and learn from her.