Last night Daffy and I had one of our “chats”…. its our nightly connection that I honestly could NOT live without. No matter how I angry I am about things that have happened throughout the day with her, this time cools me off and reminds me why I am doing what I do and how madly in love with her I am. She is genuine, sweet and innocent. Anyway, somehow we got on the top of high school and she told me she really doesnt want to go. I assured her that by the time she needs to go, she will be ready. So we counted the years…. wait…. 4 years from now she will be almost done with 8th grade and ready to go to high school???? Noooooooooooo…. I can’t take it! Four years isnt long enough. I need more time. I need more cuddles. I need more silliness, the kind of silliness that only little girls can provide. Sure, I thoroughly enjoy my biological kids and their quite adult sarcasm and sense of humor, but its not the same. Its just not the same as little girls who still believe in fairy tales, little girls who love unicorns and reading stories to their stuffed animals. How can that all be gone in 4 years? *sigh* Its too depressing to think about.
Yesterday we visited with Donald at the group home for the first time since he has been back in residential care. It was interesting at best. He and Daffy seemed happy to see each other but were are also equally as happy as when one of the staff took her to play with her former friends. We stayed with Donald (& a staff member) and played a board game. Interestingly, losing is one of his PTSD triggers. WHY on earth would we think playing a board game would be a good idea??? LOL Anyway, he was “winning” the whole game. As he was just about to cross the finish line in the game, he said “Wait, no, I need to go back here” and moved his game piece next to mine. As I rolled, he insisted that he roll the same number so that we would evenly move to the finish line together. Honestly, I wasnt quite sure what to make of that. We headed outside at the staff’s suggestion (I am always in flip flops even in the winter and and would have been just fine to stay indoors thank you very much, LOL). We were throwing a tennis ball around. Donald was purposely throwing the ball out of my reach and often trying to sneak over and get ice chunks to throw in its place. Um, no. You will NOT throw ice chunks at me. He did take that correction and put it down, but I was very fearful every time I needed to turn my back. I was very glad Mickey was there with me to, literally, have my back. Later, we said goodbye without incident.
The staff reviewed the new “behavior” plan with us. It includes a points system and doesnt make complete sense to me yet. (I was able to find loop holes in the system around safety). They also went on to say that he will be OFF this plan this week because the worker who understands it best will be away for 4 days at a training. What the heck? If its so complicated that the rest of the group home staff cant handle using it for 4 days how the heck is this supposed to translate to home life? Ugh.
They also indicated they will be starting a collection of sensory items for him for when he needs to cool down. They suggested that they dont have “approval” yet (not sure from whom) but they want to include a MP3 player with classical music. They asked if WE would pay for it!? What?? How does that make sense??? I mean, none of this is about money for us, but they are PAID to cover his needs. We are not even receiving compensation for mileage (the round trip is 2 hours in the car each time we go) anymore, let alone any sort of compensation to provide for him. I am DUMBFOUNDED that they would ask for us to pay for this. I feel like this is some sort of test to see how invested we are and I resent it. I drop everything at 7pm every single night to call him. I write him letters. We set aside other plans to make the trek up to visit him. I attend all meetings I am alerted to when it comes to him (which is MULTIPLE times per month). I am in NO WAY compensated for my time and you want ME to pay for this MP3 player that YOU select????? Our sw says we are not responsible for such costs, but for me, its much more than that. Its the audacity that the staff has to expect we will pay yet give us vague updates and leave us out of any planning/meeting/appts they feel we would not be beneficial to them by attending.
My goals have not changed. I am still in this for the long haul and my goal is still to keep two siblings connected (although I cant say I know what that means at this point), but I have to say that this is FAR different than what I ever would have expected when we started this journey. Maybe the lesson in all of this for me is to learn to roll with the punches? To expect the unexpected? I dont know and I am determined to figure it out.
[All names have (obviously) been changed to protect the privacy of our family.]