Thursday, June 8, 2017

It Comes in Waves

I like to think of myself as a realistic optimist--I try to always look for the best in a situation and believe in the power of hope in realizing dreams.  I also am not oblivious to the fact that a dose of reality plays a very important role in determining where to place your hope--that you have to hope for things that are somewhat realistic so that you aren't constantly being let down by unmet expectations. But hope is powerful.

I also like oblivion...sometimes it is really nice not to talk about something for awhile or not to ask questions where you might not like the answers.  Its almost like it disappears for a minute and you are able to pretend it doesn't exist.  Totally dysfunctional coping mechanism that we all employ on occasion for the sake of survival.

When Matt was first diagnosed with autism, I grieved.  I grieved the death of hopes and dreams--a reality for him that I had painted in my mind at his birth.  I mourned...and then I (we) picked up the pieces of that shattered dream and built a new dream that is equally bright and beautiful, but looks very different. Since then, we have started to realize the severity of his disabilities and added to autism a list of struggles.  But I love our reality.  I love the gift that Matt's disabilities represent in our life because of the people we are evolving into as a result and the focus and purpose that it gives to our family--we are almost forced to focus on what matters most.  We are literally incapable of coping with the frivolous because we are so consumed by the reality.  There is no energy left.  But we call it our gift.

However, every once in awhile, the grief comes again and washes over me like a giant tsunami wave--it retreats, I'm hanging out in oblivion for a bit, and then FLOODED....knocked over by what I thought had already passed.  I thought I had accepted our new dream--embraced it.  But my last dose of reality hit me pretty hard and, while I know I'll overlay a little optimism on it and feel better very soon, the tears are my current companion.

Matt's behaviors of late have sucked.  They have not improved.  This is a long, horrible, bloody (literally--my hands have taken a beating) phase that I keep wishing was over, keep praying to find the lesson in, and daily have to petition heaven for patience that is beyond my own ability to muster up.  I am not the only one effected by this--our kids are, Todd is, teachers, paras, therapists, tutors, BCBA's, sitters, doctors--the village.  As a result of the length of this phase (because his entire village shares this pain), we initiated a Functional Behavior Analysis at school with the psychologist taking the lead on evaluating what the function of his behaviors might be so that we can make sure we are addressing them appropriately.  At the conclusion, I was given a write up/summary of his findings which I received a couple of days ago and then I met with him to discuss his findings and ask any questions.  Emotion hits you at weird times--this should not have prompted an extreme emotional reaction, but for some reason, I could feel it all welling up.  This kind, well-intentioned man almost had a woman in a heap at his feet sobbing her eyes out, which I'm confident would have thrown him for a mighty loop from which I'm not sure he would have recovered.  So my goal was to keep it together until the car.

It wasn't that he told me things I didn't's that he brought me out of oblivion and gave me a healthy dose of reality that I didn't want.  Part of this analysis talked about Matt's current level of function being that of an 18 month old.  Absolutely true, but to think that, several years ago, he was at that of a 9-12 month old, that is a seriously slow, painful trajectory that doesn't bode well for him, even if he lives well into his 90's.  He also talked prognosis which NO ONE--not one practitioner or professional--has ever dared to do.  His statement was that Matt will probably always need adult supervision to help him complete basic life functions (i.e. self-care) and keep him safe and secure.  Nice how I can't even write it without bawling....because that is not what I want.  I want more for him.

There are events in our lives that remind me just how hard this life is going to be for us and for him and the selfish part of me wants to picture more for both of us.  This is one of those events.  Not sure why....I just feel really, really sad.

Matt now has a BIP (Behavior Intervention Plan) which will be incorporated into his IEP.  I feel like he is on probation, but it is not that at all.  I just feel so sad that he requires one.  Matt has historically had the reputation of being a love bug and most of his outbursts and avoidance strategies were almost charming--he'd hug you to get out of a tasks or throw himself across your lap and play exhausted. But now he cries and says "sad, cry" when he is frustrated, pulls hair, bites, drops to the floor, runs away, screams, scratches, and lashes out.  I feel afraid that he is becoming harder to love and love was the big thing we had going for us.  I know for a FACT that his village would tell me I'm crazy to entertain that thought, but this boy that I cherish--that my whole heart and soul is invested in and that I love with a mamma love I didn't know was possible--is a struggle even for me on days.  I love him and am oh so endeared to that sweet child of mine, but it is hard to like someone who hurts you over and over.  The love of his "village" has never been anything but can't help but fall in love with Matt....but if he keeps hurting them, I worry about the toll it will take on those relationships.  I cherish Matt's village.  Words cannot express the gift they represent in my life.  I just don't want them to have to endure a struggle--I want them to feel they can't help but fall in love with him.

I have to remind myself that it is OK to be sad--sad is not weak.  I'm not an ungrateful person because I'm feeling a little bit sorry for myself for minute or grieving for Matt because his life isn't ideal.  I just can't hang out here for too long or I miss the opportunity for growth that difficult experiences provide.  Hanging out in oblivion on purpose is like dodging progress. Anyway, I  know that this tsunami of sad too shall pass. I know that I will feel better after a good cry (or twelve).  And I know that God loves Matt and didn't send him here to suffer and be constantly frustrated.  He sent him here to have joy and to be a source of light and a teacher of all of the most important things that will influence the lives of those around him in a way that leaves them better.  I just have to piece things back together again and come up with a new masterpiece in my mind, incorporating every reality, and then clinging to precious hope.


  1. This is powerful stuff. It feels honest and brave. Thanks for sharing.