Wednesday, December 19, 2018

Reflecting on Aggression; Embracing Hope

It's been awhile since I have written anything of substance.  The truth is things are going pretty well in our little autism world and when things are going well I'm usually pretty quiet.  I have given some thought to this over the last few days.  Why is this?  Initially, I thought maybe I just don't want to jinx it.  But I don't think that's all of it.

The truth is when I share progress or happy posts I can almost feel half of you stop reading and closing your laptops.  I can almost feel the mama with the little one on the other side of the country tearing up that her son isn't there yet.  I can almost feel the resentment of the mom with the adult nonverbal, aggressive daughter because her daughter may never get there.  I can feel the anger of the dad who would love to applaud my son's progress but is so frustrated after years of trying to access services that he can't be happy for us.

And all of those feelings are legitimate.  I have been on the other end of some of them and have felt the exact same way.  It's hard to rejoice in the autistic child singing the anthem on national television when we are experiencing bathroom accidents every day thanks to that same autism.  It's hard to celebrate another beautiful savant autistic mind reported on the news when my autistic child is still not reading or writing.

So I get it.  I get that the little feel good stories and milestone shares are hard for some of us.  And because of that I was hesitant to share something pretty spectacular that has happened in the last few weeks for us.  

I have been very vocal that aggression has often been the hardest part of our son's autism.  For years it has been a physical and emotional battle for me personally, as I am often target number one.  For our autistic son's siblings it has been the traumatic part of growing up in an autism household.  And I never plan to sugarcoat that reality that many of us live.  I did a quick search through our written journey because I want to emphasize what an impact aggression has had on us over the years.  

Please don't tell me his autism is a gift as I take his little sister to the hospital for a concussion resulting from an impulsive outburst that he could not control.

"Ever since the last move our autistic child's behaviors have been pretty bad.  There are a lot of mornings before school that he screams the entire time I am trying to get him ready.  He will go after me.  He will sometimes go after them.  Going from that to walking through the school doors ten minutes later, that's probably pretty hard for his older brother..." my voice cracked.

I could also tell you that upon arriving to occupational therapy today he threw himself down in the hallway and screamed that he hated me.  I could tell you that he nearly kicked through a glass door and that his sister had to be taken by another therapist to safety while we blocked and managed his meltdown.  I could tell you that right after that polite conversation at school he saw a teacher he didn't want to walk with and bolted away from me down the hall.  I could tell you that while I gathered him up he screamed obscenities and tried to bash his head into the cement wall. I could tell you I had tears in my eyes as I left the school.  I could tell you that while I'm thrilled we were invited to a party we most likely will not go because his behavior has been too impulsive for me to chance it.

And while we all know there are hard days and we all know what that means, I think we do ourselves and our community a disservice by pretending aggression is not something a lot of autism families deal with. Some daily. Some hourly.  Not talking about it takes a toll too. Along with all the good, there are a lot of feelings and a lot of pain that go along with raising a child with autism. And those feelings are valid. Always.

We have had ups and downs with aggression.  The bad months were especially bad, with locked doors and tears and bruises and blood.  We have medicated.  We have fought hard for access to intensive therapies.  We have gone weeks without aggression only to regress and be near inpatient admission the following week.  We have seen gradual progress over time with different therapy methods and medication.  But most of it has been reinforcement and consequence driven.  When aggression would ramp up we would ramp up our behavior plan at school and at home.  Methodically we would reduce the aggression with consistency in reward and consequence and we would eventually get back to him being more in control and less likely to lash out.

This has been the pattern since he was four years old.  But a few weeks ago, for the first time, he started a new pattern all on his own.  He would feel himself getting worked up (usually when compulsion or rigidity would get the best of him) and I could see it coming.  I anticipated the blow or the bite.  I readied myself to implement his behavior plan for aggression.  But instead of lashing out he grabbed onto me and said, "Just hug me.  Please just hug me."  

As soon as the immediate shock wore off I did just that.  I sat down with him and hugged him as he rocked in my arms.  Later I pointed out the difference to him.  "It was so nice that you asked for a hug instead of hurting me."

And he very matter of factly said, "It doesn't feel good when I hurt you.  I'm always sorry.  This is better."

Ever since that day, when he is in the midst of meltdowns (which are still plentiful this time of year) he has burrowed his head into me and asked for a hug.  We stay that way until he calms down and until we can talk about a plan to make him feel better.

I don't write this to make anyone sad or mad that they are not there.  And I certainly don't pretend to have it all figured out.  Nor am I naive enough to believe our ebb and flow with aggression won't have many more chapters as he gets older.

But if your family is in a dark place with aggression I write only to say we have been there too and to give you hope.  Continue on with strength and empathy.  As much as you as a parent are struggling to keep everyone safe and hold it all together, your child is struggling that much more to find a constructive way to deal with everything going on inside of them.  And when they find a better way to cope, you'll be there, scars and all, to embrace them.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...