When you’re on a long journey of a specific life experience, even though it is ever evolving and changing, there are some things that can still catch you off guard.
My son has been in a therapeutic day school since 2013. We’ve had multiple IEP meetings, they have a full history complete with doctor diagnosis and more notes and feedback from me than they care to have, I’m sure. We’ve discussed how much of my son’s manifesting occurs at home, in his safe space; A space I need to keep safe for him, even though it causes a lot of inconvenience and difficulty for my son’s siblings. This post came about because of a conversation last week with a team member that was a little off-putting. I’m going to preface it by saying that while I can come to the conclusion that it is true that most people can’t truly understand something unless they experience it, it is extremely frustrating nonetheless.
My son has been having a lot of difficulty of late with mixed states. Even though this is a hallmark of bipolar, I suppose if you don’t see it frequently, it can be surprising to witness. Let’s go with that for now. Although I have had many, many conversations and email exchanges with the therapist and teacher team explaining my son’s experiences and decompensation at home, it is not something they see often at school. What they understand of my son at school is that he is a child that internalizes all of his most significant issues and presents with, “I’m fine.” It has become clear to those who have been around him for long periods of time that it takes a skilled eye to see when he is struggling. Right now, as his stability is compromised, it is much easier to see.
The “seeing” is where they are getting tripped up because it is unusual. So, when the therapist called me to say that my son was reporting being very sad at check in’s along with crying, but then witnessing him skipping down the hallway only a short time later, I confirmed that his often rapid-cycling mood does indeed manifest that way. The therapist was a little out of sorts over this revelation in front of his eyes. When the therapist asked me if this is similar to what I see at home, I was glad I was on the phone because I know I rolled my eyes (I’m an eye-roller from way back). It’s difficult not to be frustrated when I have described this to the team more times than I care to recount.
When I get the, “Wow,” reactions, especially from people who have been with him in a setting for a long time, it confirms my belief that people can’t really understand something unless they “see” it for themselves. No matter how many times someone says, “I understand,” they don’t until it happens in front of them. This is my experience with people, and it is doubly frustrating because I spend a lot of time talking about mental illness and particularly that of our family’s journey. When I hear the, “We didn’t know,” my mind says, “Oh, really?” no matter what words come out of my mouth.
As a mother and an advocate, I can only say that I feel strongly that it is necessary to bring awareness for and to the many children that suffer from an illness that can be invisible to the eye, or entrenched in a behavior manifestation that belies understanding. There are scores of children that suffer in silence or endure judgment over a illness that is not well understood, neither by themselves nor their peers, and not even by their teachers and caretakers.
While my sons still experience stigma and are very misunderstood by a good portion of people in their lives, it doesn’t mean that people don’t care. I want to say to others on the journey that there is a definite difference between people who care and are trying their best to understand and those that are just dismissive. I know that our team cares about our son and they are doing the best they can with the tools they have at their disposal. The illness that is bipolar is still not as well understood as it should be. I dedicate a big portion of my life to this, so I understand that a group working with so many different populations of children can’t possibly know everything there is to know about bipolar. The fact is, my son is in a school where his ED (emotional disturbance) label comprises less than 5% of its population. This is why it is so important that advocates and caregivers are well researched and informed and know the challenges that come with an ED categorization on an IEP.