Tuesday, May 17, 2016

Autism - Loving the Unlovable ... Myself

Our days have gotten a bit longer. 
The moon comes out in time for a soft goodnight, 
the trees in our yard bloomed - this past week they have been raining white petals.

I wish I could say that it was warm and sunny, but I guess without the drizzle and the wind we wouldn't have such magnificent clouds to look at. The last two days have felt so much like fall that last night I made the kids sweet potatoes, cranberry sauce, veggies and bread and butter. 
That's just the way I roll. 
As I type, I have a 9X13 pan of vegan fudge pistachio brownies baking ... I'm out of fruit.
When your out of healthy things, one isn't left with much of a choice.
Really I just needed chocolate.
The scent of chocolate and rain makes me feel pensive. 
Home sometimes makes me feel like a stranger.
I can't explain it.
It's like I belong, but don't belong. 
Ever thought you were born in the wrong lifetime, or live in the wrong part of the earth?
I think I'm suppose to live in Maui. Pretty sure about that.

The last couple of weeks have been hard. 
Not horrible by any means ... still lots of moments of sunshine and smiles, quiet moments with books and puzzles and coffee. Don't fret. 
I've felt alone though in my battle/acceptance of Aspergers.
My little Brady experienced 3 straight weeks of frustration, tears, and just overall - horribleness.
It's hard when you can't figure out the puzzle.
Was it something he ate?
Was it the weather?
Did I change a routine?
Is the once a week soccer practice triggering him?
Am I not patient enough?
Did I use the wrong tone?

This has been my child his whole life. It's a constant cycle of a little bit good, a little bit bad, rage, spinning, being scared of things that even my little Finn isn't scared of (crossing the street, going to the store, butterflies coming to close...)
I tend to do fine when what I will call the "hard cycle" hits (when he is laughing uncontrollably, aggressive with us and his siblings, growling, scrunching his nose and glaring continually at everything, has no control over his body or bodily functions.)
 I have some tools in my tool belt. I usually have to keep him on a strict schedule, limit his playtime with the other kids, we can't play any type of board game with him, I have to use a reward schedule...generally I know it will be one or two very long days and then he will get back to a "normal cycle " (needing assistance with play and conversations with others, needing a semi-routine day.) The last 3 weeks have been one long hard cycle with no relief. 

The moments I have cherished are the quiet times when he hasn't been around. That's just the truth.
 I can't explain how horrible that make me feel as a parent - to just own it and to say out loud "I have to have a break from this child because I'm going to do harm to him or me or something glass if I'm here another second." 
Like I said, a day or two at a time...sometimes a week, but 3 weeks? 
Then, two days ago, he comes down the steps for breakfast and, in just the way his jaw was set, I could tell there was a change. He was much calmer, his conversation was "normal cycle" with even kind remarks intermingled. He was super sweet and thoughtful and even helpful the entire day. 
Then he was the next day. 
Today he is still doing well, just needed some assistance during playtime. 
I've taken a breath.

“The beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image. Otherwise we love only the reflection of ourselves we find in them.”
 Thomas Merton

I want to love all of the versions of my kid.
 I love all of HIM - I'm unconditionally there day in and day out. Even when I have to run to my room to get some air, console the child he hurt and then try to get him to communicate what is going on in his head so I can help sort it out - I'm there. I know that after my small break I will re -emerge and I will figure it out. I will figure him out. 
I will never give up on my child. I will never run away from home. I will never make him feel like he is distasteful to me.
But, I do have to give myself grace when I don't like his "hard cycles."
 I hate them.
They make me want to scream. They make me want to cry. They make me want to drink. They make me want to hide ... somewhere. 

In the midst of making me a stronger person, I feel weak.
In the midst of loving someone without fail I question my commitment.
If you have ever been physically attacked by someone having a meltdown, you will understand. 
It's not easy to have things escalate to a point that it looks like a cat got hold of your arm. 
It's not easy to recognize that maybe you caused it to escalate because you said "this" instead of "this." None of it is easy. 
When I was calming down from several of our recent battles I would remind myself "this isn't my little boy doing this ... this is his mind exploding and he doesn't know what to do. I need to help him."
That is the only "trick" I have. 
I put myself in his shoes as much as possible - it's an exhausting place to step. 
I guess my trick is called empathy.

What I hate most about these long hard cycles is that I get to see the version of me I don't like either. We all have that version. 
Like it or not, we all prefer certain versions of people and ourselves. We may love all of them, but there are things we don't like. A screaming baby or a giggling baby? You pick.  An angry toddler or a happy toddler? I would take the happy toddler all day long. Happy toddlers are the bees knees.
A husband that is watching tv all day or one that is holding your hand and talking and connecting. The second thank you very much.
The friend that is self absorbed or the friend that is equal and caring? 
We all have versions. 
Sad us or happy us? Motivated us or unmotivated us? Creative us or uncreative us? Bitter us or forgiving us? 
The trick is loving ourselves even when we aren't are best. 

There is nothing weak about feeling sad. There is nothing weak about feeling confused. There is nothing wrong about preferring our child when they are like "this" then like "that." 
It's like weather ... I like rainy days and sunny days. I prefer sunny days. However, if I never heard rain spattering against the window panes again, or smelled the wet earth - I would be sad. In the grand scheme of things, I need both to have balance. 
We need good days and bad. We need them so we can experience being grateful, so we can experience being strong through weakness, so we can experience choosing love when it would maybe feel better to run. We need grief, we need sorrow so that when things aren't sorrowful we can appreciate laughter. If we laughed all of the time it probably wouldn't be as special. 
I love someone with Aspergers. Through him not being able to express empathy, my empathy has grown leaps and bounds. Through him being unstable, I have become a more stable person. Through him not understanding his emotions, I have been forced to understand mine...so that I can help him. Through him being afraid of people, I have learned to be brave with people, to draw boundaries with people, and to be myself no matter what feathers that ruffles. 
Brady has taught me that. 

I love that little boy. It breaks my heart to ever feel upset at him or at what he is. It breaks my heart to know that sometimes I wish he was different. It hurts my head to know that I'm probably in for another long hard cycle pretty soon. 
But I'm grateful for today and for his smile. 
I made him brownies. 
I'm grateful today for his eye contact and for his body standing semi-still. 
I'm grateful today for self love.

“If people are going to be allowed to say "we love you" and "I love you", they'd better have the backbone to prove it. Love isn't just a word.” 
― C. JoyBell C.

“Perhaps real love doesn't recognize a person, it recognizes a space in another. Space that allows us to show and receive love. Space that is supportive of self-expression. A safe space. It looks past the exterior human “shell.” 
― Camille LucyThe (Real) Love Experiment: Explore Love, Relationships & the Self


  1. Thank you for you brave and raw honesty. Sending you hugs. xo

  2. Does Brady receive any kind of Early Intervention services? If not, you should look into them if you haven't done so already. My sister is a social worker that works in Early Intervention. They do amazing things with children. He's so blessed to have such a loving mom but sometimes, when it gets to be too stressful, there are other options. It doesn't make you less of a loving mom. I hope I'm not out of place for saying this to you. I am a mom of four as well and I know how stressed I get at times without having a child with Asperger's. xo

    ~ Wendy