I have been putting off writing this for so many reasons. The most authentic one however is I honestly feel completely out of my league. I keep saying to my self “I don’t know enough yet to talk about this. I don’t want to misrepresent anything, get all your emotions organized, felt, processed and concluded. That way when I write this article it will have a clean and consistent message.” Honestly it’s my perfectionist coming out again. My shield of perfection, wanting to put up a good, well informed front.
This articles main message will ever be changing, that is about as perfect as it going to get my friends. My desire to feel everything and get my self organized has kept so many secrets secret, suffering in silence. A friend would say, “we get sick with our mouth and we get well with our mouth.” Yet another friend would say “publish the truths within.”
Nathan is my first born. Everything that happens with him all seemed normal. Then one day a speech therapist approached me in his occupational therapy clinic where he receives therapy for Sensory processing disorder and told me “I want to do an eval on him.” OK, why? Her input was “the mannerisms in how he speaks stand out to me and he’s a great kid and I would love to work with him.”
Abram and I gave permission and the eval was underway. It happened to be over spring break so he could get it all down in one week. Her conclusion was he needed to be fully evaluated by a neurophysiologist. She suspected there was more going on.
With in a month and a half Abram and I were on our way to his Neuropsychology Eval summary visit. I think I floated in to her office eager to know the information so I could file it away, create a narrative and move on. That’s not what happened. In any situation I feel completely powerless I fight the urge to gather as much information, sprinkle a few feelings in the story so no one gets suspicious that I’m not ok, and find a box to explain the feelings then with a snap of a finger I close the chapter.
Powerless=Protect my self=ARMOR!
I can recall sitting on the leather couch. His doctor spoke so directly. “Nathan is autistic, ADHD, the inattentive type and he has anxiety”. Nathan is high functioning Autistic. He doesn’t have autism and yes there is a very big difference in that distinction. I felt relieved and hit by a truck at the same time. In that moment everything seemed to change and yet nothing changed. I felt validated, like things finally made sense. I can honestly remember thinking and maybe even saying, “so I’m not crazy. This isn’t something he will grow out of. In fact its probably going to get harder”
We talked extensively about Nathans rigidness and how it could come out as aggression if not addressed. Abram and I asked the Doctor if our failures as parents caused this and concluded he was born this way. We talked about our successes as parents and what we have done to help him articulate him self to be understood. We talked about school and the separation from his peers. We talked a lot about how great of a story teller he is and how his amazing work is stuck in his brain. We talked about how he can recall all kinds of facts about animals, space and the human body. We talked about my husbands and my past and how autism has a strong genetic basis.
We covered a lot of information. And I was still left with the sense of now what do I do? My instinct? It was to armor up. Go wordless, figure this out, get it together and lock these feelings in a place deep within. Put on my get shit done clothes and dig in. Yet, I couldn’t move. I was frozen. I knew I needed to talk about it, I wanted to talk about it but what do I say? Who would understand?
I picked up the 1000lb phone and called my peeps. I called my friend Jeanie who has personal experience in special needs parenting and I called my friend Jane who has a back ground in special education, she is someone I have placed my heart in complete trust to. I called some other women in recovery. As I’m on the phone honestly I feel like I’m looking at my armor next to me just waiting to be used as a buffer to the world. However I have learned that once it goes on, you know once I suit up, nothing gets in but nothing leaves either. Just for today the desire to shut down is being fought off.
Yet I find my self sitting next to my suit of armor and seeing all the comfort and protection and information based living it has to offer. Something has changed, it doesn’t fit any more. It feels cold, stiff and unwelcoming, my brain says I just need a minuet, get my head around this, but how do I get my head around something that keeps changing?
Bottom line, I don’t. I can learn everything there is to know, become an expert if I wanted to, and nothing will replace the living experiences and being in the moment. Every day presents its challenges and its gifts. Every day I learn a little bit more about my own strengths and inadequacies.
As hard as it is to trust in the things unseen and unknown, I must.
I trust that God has a plan and I’m in it.
I trust that if don’t have the answer right now, I’m not supposed to.
I trust that God is good no matter what the future holds.
I trust that the label of Autism is just that, a label to learn what fits and what doesn’t.
I trust that there will be assholes and angels along the way.
I trust that God equips the called, he doesn’t call the equipped.
I trust that I have people around me, that I do not stand alone.
I trust that I have no idea what I’m doing but I will have fun figuring it out.
I trust that I will have days that will be miserable and filled with struggle.
I trust that I will scream in the same pillow I had a pillow fight with the night before.
I trust that problem solving will require 70% more words then the average child.
I have a son who is Autistic, I also have a son who loves to hike, tell stories, watch movies, gives gifts, play in the dirt, listen to the sounds of nature. He would love to share his rocks with you. He loves to give hugs even though he isn’t fond of being touched. He loves to draw and paint, especially if he plans to give it to you. He won’t understand your humor but he can tell some funny jokes. He’s not big on high fives from strangers please don’t take it personally. He interrupts a lot and please be patient he’s working on it. He is sweet and thoughtful.
Above all else, behind the other traits he may show, he wants to be accepted, nurtured, seen, heard, valued, considered because after all isn’t that what we all crave?