We were very lucky that it didn’t cause a stroke. It caused these terrible headaches to come on when he was in the eighth grade. And every day, they got progressively worse. And in two months, he was diagnosed and scheduled for surgery.
Lisa: I understand that brain injuries are referred to as the invisible injury.
Robin: Right. Brain injuries can be tricky. There are times when he can seem just fine. He can hold a conversation. He loves politics and investing, and there are other times when he is walking in circles or punching at the air. There is no physical sign of a brain injury. I always worry that people will think he is violent because he is doing that. So I try to make him aware of it because I don’t want him in a situation where someone sees him and calls the police. God bless the police, but they just don’t have the training in this area.
Lisa: Did you deal with any violence before or after he was diagnosed with Moya Moya?
Robin: When he was a toddler, he was a real kicker, so I would walk around with bruises. And once, my mother-in-law came to visit, and my arms were black and blue. And she took me aside and asked if her son, my husband, was abusing me. And I said, “No, it is just that your grandson kicks and punches.” And she said, “God, it looks like someone beat you up.”
But it was after his surgery that his aggressiveness really began. He started seeing and hearing things and was having psychotic symptoms, so he would grab me from behind and push me head first into the window. He would try to restrain me a lot. He would lift his fist up to me, but he never hit me. He would restrain me on the floor because he wanted something, and I said no. And he was going to hold me there until I said yes. It was difficult.
At that time, I was more angry than scared. I didn’t really think he would hurt me, and I knew he wasn’t being himself. I am not even saying I know what it is like to be an abused woman; thankfully, I have not been through that situation. But I did have an inkling of what it was like to lose power. That’s what it felt like: that I lost power. And that was not a good feeling.
Lisa: What did you find most challenging as you went from phase to phase, worrying about Seth’s disorder?
Robin: That none of the doctors or psychologists gave me any other outlets. It was like I was the one going out there calling people and trying to find out what was next. And I don’t know if it was because the original psychiatrist misdiagnosed him as being a schizophrenic and decided to stop there. But it was very challenging. Even when I thought Seth had schizophrenia, there aren’t many services out there for people under the age of eighteen with these issues—not from the mental health end. And you can access them for people with developmental impairments through the county, but I didn’t find that out until later on in the course of our story.
Lisa: You said in the book that when a family member experiences trauma, it doesn’t just affect their lives, but the lives of those around them as well. What would you say to families to help them cope? How can they still live their lives, while raising a child with special needs or supporting a family member coping with trauma?
Robin: I would say that it is not only the child that needs the support system around them, it is you as well. Whether it is going to a therapist, going for a massage every week or going out for coffee with your best friend, you need to take care of yourself. If you don’t take care of yourself, you are not going to be there for your child to get them through this.
Lisa: You entitled Chapter Twelve “Things Can Get Much Worse.” Can you speak about that?
Robin: Before the surgery, the neurosurgeon gave us a laundry list of what could go wrong. He could have dealt with short-term memory loss, cognitive delay, psychotic symptoms, or headaches again. I could have ticked off everything as a checklist.
It started in the hospital after surgery. I stayed with him for three days while he was at the hospital, and he started having psychotic symptoms. He thought that the doctors were conspiring to sell his body parts. On the hour, every hour, he would wake me and ask me to check in the hallway to see if they were passing around money. My family members sent cookies for him, and he wouldn’t eat them because he said they were poisoned. For a long time, he didn’t trust family members, and I don’t even think he trusted me or my husband.
Lisa: So you hoped that after the surgery that things would get better, but they actually got worse before they got better.
Robin: Right. And that’s an experience that any caregiver can have. It doesn’t have to be a brain injury. I think about the people who have a child who is “typical.” And then one day, they have a breakdown and are diagnosed as bipolar or schizophrenic. It is a shock to your system because no one gives out a manual to tell you how to deal with this. And you just have to feel your way around.
