In my other life, I work for a family organization in Oregon that helps families across the state with children who have various special needs. We work tirelessly to help families learn how to develop and use their voice to advocate for their children. In my recent experience with my daughter, I learned that there is still so very much work to be done to help families from being overpowered by professionals and to assure our children get the care they need.
After transferring Jovanna to a sub-acute unit to continue the work of titrating her off the medication causing the dystonia, I noticed that staff on the unit and nursing staff were referring to Jovanna's dystonic episodes as "behavioral". I was seeing red! So, what do you do when a child does a "behavior" that you don't like? You either scold them for it or ignore it, right? So, my daughter is in a full body dystonic episode with eyes rolling back in her head, arms and legs thrashing around, muscles contracting so tight it is painful, and...not taking breaths!!!!! And they are referring to this as a behavior that she has control over!
I can't tell you the thoughts of awful things that were running through my head. I can't tell you the most immense anger I was experiencing! Her father and I were afraid we might not see her alive again. Thank god I do work where I do and I have developed as a strong advocate for my daughter and when it comes to my children, I have the tenacity and strength and stamina of a pit bull! I kicked into gear and wouldn't stop until my voice was heard. Finally, I was able to meet with the doctor following her at the center and we had a discussion about what was happening. Because of some of the movements Jovanna was making in the days leading up to the acute dystonic reaction, and because Jovanna admitted to me that there had been a few times on the unit that she was playing with staff and faked the eye movement that she makes when she goes into an episode, it all made sense then. The doctor realized that the times that Jovanna had faked the eye movements caused staff to believe that everytime Jovanna was having a dystonic reaction that it was not real. So, herein lies the danger of professionals and other forming "oppinions or assumptions" with our children...because their oppinion was that it was "behavioral", Jovanna was not receiving the medical attention she needed when she was in a dystonic reaction episode. She should have been getting a dose of cogentin when it happened.
I can only be thankful that I was able to advocate for my daughter effectively. I am sad that this went on for several days before my voice was heard and that my daughter suffered during this time.
She is being diagnosed with tardive dyskenisia. This is very serious and sometimes the movements associated with it don't go away and stay throughout the lifetime. They may get better over time, over years. They are certainly more prevalent under stress with her, like during transitions, etc. She is doing quite well on very little medication and that is a real positive thing to have come out of this. She won't be on a whole lot of medications now and that gives me some peace and joy that she really is maturing and growing.
This whole experience has been one that confirms for me that the work I do with other families is so very necessary, so very important and that we still have so much work to do to help families develop and find their voice and trust their gut instincts about their children, helping families become strong advocates for their children.