Oh, Really?

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.








Truth Is….

It’s not easy educating others about mental illness.  Lots of people have preconceived notions and no matter what is said, minds won’t be changed.  I get that.  We all have thoughts and opinions about things we have built over time.  There is also a point at which we have no interest in certain things, as in, we don’t really want to learn about a particular subject; either it’s too controversial, too boring, too distasteful or maybe we feel we aren’t smart enough to grasp it.  Whatever the case, there are a lot of roadblocks in teachable moments.

One thing that I run into a lot, which is actually very frustrating, is the knowing “nod.”  The, “I get what you’re saying,” look.  The problem is, after another minute or so, it is very clear the person has no idea what I am saying.  Really, it’s only a problem if my intention is to have someone understand.  Most of the time, I honestly couldn’t care less whether or not people understand me.  My life is pretty busy and complicated and difficulty only comes when I’m seeking to be understood.

There are things, I guess, that most people just can’t fathom.  I have received hundreds of questions, and I have an arsenal of answers.  Lots of times, they aren’t popular.  People don’t want to hear that your child/children aren’t capable of some things. Here is a real life example of one issue we’ve faced:

Q: “Why can’t your 16 year old cut the lawn?”  A: “He can cut the lawn.  However, it will take over two hours.”  Q: “What?  This is property is really small!  Why?”  A: “My son has a processing disorder, along with an anxiety disorder and working memory issues.”  Q: “What do you mean?”  A:  “I will come and demonstrate how to start and operate the mower.  Then, I will begin to mow the lawn and show him how to cut in a pattern.  Now, I will watch him do a little bit and maybe go back inside.  After he does a little bit, very anxiously, he’ll come in to check whether or not he is doing it correctly.  I’ll go back out, look at it, point out places he’s clearly missed and set him back at it.  He’ll try to start the mower again, have difficulty, get frustrated and insist that it won’t start.  Then, I’ll stop what I’m doing, show him that it starts fine by doing it myself, and then set him out to continue.  After a bit, he’ll come back to find me again and tell me he’s finished.  I’ll go outside, take a look around and show him all the places he missed, and have him go back over those places.  He’ll have stopped the mower again, so I’ll have to wait and watch him restart it.  This time, he’ll be watching that I’m watching him, but he’ll get it started.  He will mow over all the places he’s missed and then come back to find me for a final check. If we’re lucky, that will be the end of the process.”

Response from acquaintance: “That seems like an awful lot, you baby him too much, just let him do it, I’m sure he’ll be fine.”

My response: “How about this?  How about you take my place and you just hang outside and watch him do it?”  If you need validation that I’m doing it wrong, please feel free to take over and get something off my plate.

That is a minuscule example.  If I want to double down and ante up, I can give you another.  A younger son of mine has bipolar disorder.  He is nearly 13, and right now, he is very unstable, and as we say, “breaking through his meds” (meaning, his once successful medication regimen is coming apart and not working for him).  Besides the return of active suicidal ideation, his perception is skewed and very illogical.

Person: Your son needs to understand that he won’t always get his way.  Me: He understands that very well.  Person: Well, he seems to be very upset that he can’t have his way right now.  Me: I understand that through your limited view that may be what you believe to be occurring at this moment, however, that is not at all the case.  Person: It’s clear that at his age he should be able to hear “no”.  Me: What is clear is that you have no understanding of the challenges to someone in the midst of a depressive cycle.  My son is having real difficulty coping with his emotions since he feels so poorly about himself and feels he’d rather be dead.  Does that make you feel better?  Person: *crickets*.

This may sound harsh, and I can only say, if as a parent, you have ever dealt with unwanted advice from people who would rather sit in judgement than understand anything, you know where I’m coming from.  My patience level and filter has waned a large degree over the years.  My only interest is my son being able to function to the best of his ability, and being the best person he can be.  I don’t have time for judgmental people, haters or ignorance.  The good news is, there are people who care, do their best to understand, and are even supportive.  When we find those people, we treasure them.  In the meantime, we’ll do our thing.  Truth is, that’s the only option anyway.