We noticed very early on our daughter had challenges. She struggled with sleep, sensory issues, and behavioral challenges. When Rebecca was seven, we met with a therapist who indicated that we should start exploring other avenues as she suspected our daughter could have autism and bipolar disorder.
She was diagnosed with generalized anxiety disorder and sensory processing issues at a young age. There was some talk, once or twice, that bipolar was playing into the situation, but it never progressed into further evaluation. But, the neuropsych referenced Fear of Harm in her summary evaluation.
Shortly after that Rebecca was hospitalized because of escalating violence. She ended up staying inpatient and then was released and did some intensive outpatient.
Our daughter has been on a whole slew of different medications. She was on Risperidone for a while, but had an issue with weight gain. She was also on Latuda but we observed her having more manic episodes which ultimately led her to being hospitalized, so we decided to take her off it. We’ve also learned that antibiotics are not good for her either.
Very early on there were sleep disturbances. It would take two to three hours to put her to bed some nights. She had a lot of separation anxiety so she wouldn’t let us leave the room. We tried telling her stories and reading to her, but she would have too much energy to be able to stop moving and lie down and relax. It’s like she had to run herself completely exhausted and then she would finally sleep.
She would sweat copiously throughout the night, when she runs or exercises she feels hotter than other children, and the ambient temperature in general affects her sensory issues. She could go from zero to 60 if something minor frustrated her, she would scream and lash out. If she went into that state she would try and hit, kick, bite, spit at you. We’d have to tell her before we grind our coffee beans, or else she would get angry, even scream and swear, or she might even hit.
Our healthcare system is very badly broken. It doesn’t function well for many people, but when it comes to pediatric psychiatry it is awful. Some other parts of the country may be better than where we live, but it is not funded well and it’s not coordinated. When we had to hospitalize our daughter, she spent a week in the ER waiting for a bed to open up in the area. But the real difficulty is finding people that really understand what is going on with her. It has been challenging to find those who can think outside of the box.
Every single one of our practitioners has said that she is the “most complex case” they’ve seen. Our kids don’t fit the mold of exactly autism spectrum, and exactly ADHD spectrum, or exactly this, or exactly that. It is very challenging for us to navigate that and find people that will listen. We are starting to get there, but we have been doing this for years. Every year that passes is time lost, treatment is more challenging to get. It hasn’t been easy.
But, there are times when she can unlock her potential, she’s got pride, she’s verbally and artistically gifted. I’d like to see her have some joy and happiness, to see what that’s like, and to develop the self esteem that can come from feeling like she’s okay, and that she can accomplish the things that she wants.