Due to all the drama at court, the question didn't get asked. So, I posed it to our worker again last week.
Yesterday I finally got a response. She said that because everyone in court was concerned about Pumpkin's recent seizure activity, she needed a safety plan from me. I took this as an opportunity to further her knowledge about Pumpkin's condition. This was my response:
It is highly unlikely that Pumpkin will need emergency treatment for her seizures. With the additional drug of Clonazepam that has been prescribed for "break through" seizures, most everything can be managed at home. As it was explained to us by her doctor, Pumpkin is (most likely) never going to be seizure free. Her condition is life-long and will require close monitoring forever. The goal of her medical care is to control the number of seizures so that she can maintain as normal of a life as possible. But at our last appointment, it did not appear that it will be realistic to expect that Pumpkin's seizures can be completely eliminated. Per doctor's orders, we are not to take her to the hospital or doctor every time she has a seizure. As best as we can, we are figuring out the differences in her behaviors to determine what are actual "events" and what is just part of Pumpkin's baseline behaviors. The only time it is now truly necessary for Pumpkin to go to the doctor when she's seizing is if a seizure compromises her ability to breathe or if the Clonazepam is ineffective after two doses.
In the event that something became life threatening while we are away, there is a community hospital in ***** just outside the state park where we will be staying. (***** Community Hospital) Of course, we would seek emergency care immediately if it was necessary.
I truly thought this should do it. But, I began emailing our agency worker asking for assistance with respite care for this weekend. My boys are looking forward to this family time and I don't think it's fair to punish them because of "The System".
I just got a response from CPS this morning...
I spoke to Pumpkin's mother as she is not in agreement to allowing Pumpkin to travel and take part in the trip. Please seek respite care and provide me with the caretaker information.
What?! Now the mother gets a say in what I do on the weekend with her daughter?! I thought this mother lost custody. No visits were being compromised. I just needed permission to sleep in a tent. If I wanted to spend the entire day at a campground no one could do anything about it. I thought I was supposed to give Pumpkin as normal of a life as possible! I don't rank shoving a child into respite care "normal" at all!! Exactly why was the mother contacted on this?!
I'm so frustrated I can barely see straight. I'm not sure what to do. As a family, we were considering not going camping now after all as there is a chance of rain and highs in the upper 90s. I'm thinking I'm still going to push for respite anyway though. Maybe we'll go out with just "our" family to a hotel and do something together in air conditioning.
Is this how my entire summer is going to be? Every time I want to go overnight somewhere I have to get permission from the mom? Of course she's going to say "no". It's the only power she has in this entire situation. She's going to exert it every time.
Damn the system stinks!