Wow. So several thoughts have been running through my head. I’m finding that they are somewhat intertwined. Earlier today, I was thinking of how far Em’s come in two years. In 2011, I never thought how independent she has become would be possible. The calm demeanor she often carries when utilizing her coping skills was unfathomable. The ability to communicate what she wants, needs, feels and ensure you are understanding her was beyond my dreams.
Of course I always hoped we’d get to this spot (and further). Yet, I know that without the right diagnosis to direct us to the treatments geared for what we’d been dealing with, who knows where she’d be.
Ironically, the same psychiatrist who FINALLY listened to me and heard me, and realized Em’s diagnosis was wrong and corrected our path is no longer going to be seeing patients where Em was. I got that letter today when I got home.
It appears, from all I have observed, that the outpatient program Em was in has changed it’s focus and no longer will provide this psychiatrist an outlet for providing services. I don’t know what exactly happened or who initiated this but she will no longer be at this location. I’m hoping she will see Em at one of her other locations.
This is every parent like myself’s nightmare: finding the great doctor/psych who LISTENS to you, HEARS you, WORKS WITH you and there is a great balance. And suddenly, it feels like you are losing it all. I did call her main number and asked if she would see Em at one of her other locations.
In the back of my head I am totally freaking out. Earlier I was freaking out pretty bad but had a few friends walk through this with me. I am scared. Em is on the high functioning end of the spectrum (and I use that term loosely) and Autism isn’t even agreed upon by colleages in the mental health field. I’m scared they will want to change her diagnosis again. I’m scared they will want to put her on medicines that don’t work well for her. I’m scared of an awful lot of what ifs.
Most of the what ifs don’t matter. However my daughter’s health and safety may be at stake and I have to plan for the worst and expect the best. I know I can’t control this and have to go through each step one foot in front of the other but in my mind, I’m keeping my eye on Em.
You see, the most important thing that I’m scared for is my fear FOR my daughter. I’m afraid of the potential regression. I’m afraid of losing time it takes her to build trust. We’ve been with our psych for 2 years and Em JUST started talking to her this last appointment.
Fears that I know are silly. But they are real. I know I’m not alone too. Parents get these letters everyday and are challenged by the next step in the journey.
I will blog about this, just not quite tonight. I’m still processing all this information and reflection. Debating if this becomes one blog or two; the one I planned on writing and the one I now feel compelled to write.