Forging on

Thankfully Kearney has not had another grand mal seizure since her first on April 16th. I got a audio/visual monitor for her room which helps me to monitor her better. It's been a blessing and a curse (lost sleep for me) but is a necessity. Her neurology appointment (1st avail) is on July 30th- so in the meantime we just wait and wonder what's next.

I've had over a month now to reflect on the school's "expert" recommendation to consider placing Kearney in a residential school. As time has passed, I am more appalled that this was suggested to us as a first step as a response to my pleas for help. I am haunted and offended by some of the comments this professional made. For example, in an effort to appear empathic he expressed his condolences to me saying quote "I am so sorry for your loss". I can absolutely appreciate that comment if given in another context. However, he also said basically that it's time to let go and move on with my life. And not to feel like I've failed but realize that "nobody could do this". I recall him saying "You're young and attractive and deserve to be happy." Yes, I do deserve to be happy and the most integral aspect of my happiness relates to my role in this world as a mother. I cannot even imagine myself being happy without her here. I would be always anxious. Her lack of ability to communicate would make this especially traumatic. She could never report if anyone was hurting her or if she was being neglected. (I'm still traumatized over the drunk bus driver incident in 2006 in which she arrived home almost an hour late by a driver who was arrested for blowing a 2.8 BAL and who later admitted to stopping at the package store and mixing drinks in the bus. All things she would never have done with a child whom she knew could report her). She would be grieving but couldn't express her sadness and could not understand why she was sent away from home and the only people who love her. (When we went to Ethiopia in 2004 and left her home with my sister for 10 days she did not sleep for days and was very upset despite us doing everything possible to help her understand what was going on and trying to keep everything else in her life as consistent as possible during that time period. After this I realized how much she does depend on us and is comforted by our presence. She can tolerate short stays away from home but would definately be stressed by an extended absence.) The professional said not to view sending her away as giving up, but instead as opening new doors for her. Although, I do feel the man may have meant well even though he phrased things poorly, I definitely don't trust one person's opinion, especially the $$$ costly services are involved and when the school stands to save money if Kearney were to go into a residential school.

Kearney can certainly be very challenging and difficult (some periods in time much worse than others). This certainly imposes many limitations on my, my son's and her father's life but we have all adapted to this. Her behaviors can certainly be managed at home. Kearney knows she is loved by us and deserves to be included as part of our families as much as is possible. And this all gets me back to the original reason I sought help for her/us in the first place. I simply wanted to get her the help she needs in the form of some support in our home to help us help her more effectively. This is her right! We had an intensive home based program when she was very young and it was effective at helping me to do the best I could for her. What I'm looking for now is just an adjunct to school services not an intense program but something substantial enough to make a difference and to help/us avoid ever needing to make a more drastic change to a residential placement.

Just because she needs it, doesn't mean she'll ever get it though. Therefore, I've arranged for another professional to spend a day with her and write his own independent evaluation of her needs for services. This is a first step in establishing some parameters for her needs which are less arbitrary than simply what the school district feels they can get away with due to budgetary constraints. (Currently a piddly 3 hours per month of home consultation split between two homes). We'll see where this goes from there... I'm over the grief of hearing the R word and refocused on my original goal.