Update: He's Not Just "Bad"

It's been a long year.  Safe to say that it's been my worst year yet.  

Pandemic aside, we've been dealing with a lot of issues here at home.  Just when we thought we'd gotten Gerry's Tourette's and ADHD fairly under control we were hit with a diagnosis for Lincoln that's been at least 2 years in the making.  

I'm going to preface this by saying that physically he is totally fine and that our situation could be much, much worse.  I know this.  But damn if it's not been a hard, exhausting, lonely road...and it feels like it's just stretched out in front of us for miles and miles.

When I say this diagnosis was a long time coming, I'm talking YEARS.  We took him to the pediatrician when he was 3 because we were concerned that his tantrums weren't normal.  The doctor said that he was just testing boundaries and suggested that we use a bed sheet to tie him to a railing in the house when he had a tantrum.  {We have never tied him to anything and have since switched to a new pediatrician}.

After that appointment, we tried to be more strict with discipline and what we let him get away with.  There were times where he was physically carried to his room during a tantrum.  Privileges were lost.  Things were taken away from him.  None of it worked.  People commented on his behavior and hinted that lax parenting made him "bad".  As with Gerry, we dealt with {well-meaning} family members suggesting that "a smack on the butt would get him to knock it off".  For 2 years.  And he just kept getting bigger and stronger and angrier.  It got to the point within the last few months where we just didn't go anywhere.  We skipped weekly dinners with our families and public outings, and just stayed in because at that point it wasn't a matter of if he would rage, it was a matter of when.  

Lincoln was diagnosed with Intermittent Explosive Disorder (IED) and Oppositional Defiant Disorder (ODD) last week and it's been a long time coming.  In a nutshell, IED is a mental illness characterized by a lack of impulse control with rages/tantrums/anger that is completely disproportionate to whatever scenario may have triggered it.  In Lincoln's case, anything could trigger him.  Literally anything.  Something as tiny as his character getting hurt in one of his video games or us being out of his favorite iced tea will often lead to screaming, kicking, punching, someone bruised or some object broken.  We call it his "hulk outs" because in the blink of an eye he will go from my sweet, silly boy to a raging lunatic who doesn't care who he hurts or what he destroys.  It's scary and sad and he absolutely can't help it.  I've read that people who suffer from IED have physical symptoms (like racing heartbeat, a feeling of itching/burning in their skin, headaches, nausea, etc) that get worse and worse until the rage comes on, and that rage is the only thing that helps those physical symptoms to go away.  Lincoln has complained of a headache and not being able to breathe during an episode, but I don't think he even knows what a racing heart is let alone how to describe it.  Episodes last around 30-40 minutes (sometimes less on a good day) and so far have happened up to 4 times in one day. Afterward Lincoln is exhausted.  Sometimes he falls asleep right where he is on the floor; other times he just lays there with his eyes closed until the exhaustion passes.  He's always apologetic and, sometimes, embarrassed afterward.

Two years.  

Two years.  When I think about all that time wasted that we could have spent getting help, it makes me so angry.  I'm mad at the doctor who told us he was just pushing limits.  I'm mad at the people who gave us looks and made snide comments whenever he lashed out.  I'm mad at myself for knowing in my gut that it was something more than just him being a "difficult child" but letting other people make me doubt myself.  I'm mad that we spent years punishing him for something he couldn't fully control. I'm just mad.  About all of it.

The diagnosis doesn't bother me so much as the reality beyond it.  I've been researching the hell out of IED and joining support groups online and...it's not pretty.  Those with IED, particularly males, are more prone to substance abuse, self harm, suicide.  Jail, violence, poor grades, poor sleep.  I've been talking with people in one of my groups who actually have IED and they have not led easy lives.  Poor relationships, difficulty keeping a job, few friendships, divorce, alcohol abuse.  There's no cure, and I have yet to come across anything that's not negative about this. 

I can spin Gerry's Tourette Syndrome and ADHD in a positive way.  It makes him unique and he's creative and more sympathetic because of it.  His TS doesn't hurt anyone, and a lot of the time we're able to laugh about his tics.  I don't laugh about Lincoln's IED and I can't find a positive way to spin it.  It's scary and it hurts people and I don't know what the hell to do to make it better or easier on him or anyone else.  And I hate that people will see him as someone to fear or to stay away from because of it.  Because they will.  All it takes is witnessing one hulk out and you can completely forget that he's a sweet, silly, entertaining boy.  All you see is the anger and the destruction, and it's hard to see him as anything else afterward.  

So...that's where we're at.  And why we've been quiet for awhile.  

After a hulk out...worn out, red-faced from screaming, exhausted