One Step Back

Maybe I’m just not meant to work. I have tried everything to make it work and it seems that it’s just not meant to be. I stood in this same emotional place back in November as I sobbed in that nurse’s arms in the conference room. I knew it was the right thing to do. Turning in my badge and my keys to the new nurse manager who had no clue who I even was. The door slammed behind me. and I stood outside the door waiting for the elevator just staring at it as my heart broke. I just couldnt do it anymore with my own son’s mental illness to battle at home. I would walk onto the unit exhaust and leave crying more times than I would like to admit. I would drive home sobbing and sit on the porch just looking at the stars admiring the quiet sky a calm moment after a day of chaos. 1215am was the most perfect time. Everyone was asleep. Autism was asleep. The kids, the husband, the societal expextations all asleep as my mind caught up with my heart. I would just sit on the hard concrete pull my knees up to my chest and wonder where I was supposed to be. Asking if the whole world was crazy.

On Friday I had a conversation with my Sons ABA therapist Nick who is studying for his masters in social work and it was almost therapeutic. “I think everyone should work inpatient for at least a year. It will change everyone” I said. I feel like the is no passion when it comes to helping people anymore. Its all bottom line economics. There is no emotional connection. Just that “scizophrenic case in room 116 bed 4”. There are giggles at the off the wall delusions. the PIA (Pain in the ass) patient that is a “frequent flyer” everyone on staff knows and scoffs when we see them on unit list in report two days post discharge.

I always thought I would be a psychologist. I remember driving down that stretch of I-94 on my way to Ann Arbor and feeling so alive. I couldnt wait to hit the text books ( i always had them almost completely read before the semester started, I loved the lectures, the students and my quiet understanding as I sat quiet as a mouse while the debates volleyed. I miss the big lecture halls, I miss walking from one building to another and sitting in the union acting like I was working when really I was watching people and observing their behaviors and laughing. Until recently I still held on to hope that a masters degree was in my future but more and more I’m realizing that maybe its just not in the cards for me. That maybe its time for me to stop chasing something not meant for me but then what do you do when you cant follow your passion? when you cant do the one thing that you are so good at? The one place you feel confident in life?

“The pet shop is hiring. Maybe I will try there in late august when the college students go back to school and keep the cash register warm for them” I said to my mom in a conversation last week. Makes sense in the scheme of things. I mean, whats the point of beating my head against a wall when nothing can come of it? What is the point of giving all my talents and passions when I have no one to help refine them? To make me come to life? I’m only alive when I’m learning and behaviorism was never my interest. I mean I will be 35 in just a few weeks should this really be such a big deal anyway?

I cant help but feel like I am coasting. Just surviving with no real direction but I just dont know how to make it all work with Autism in tow. It comes down to economics really. and to me economics mean more than money. Its time. Its where I spend my energies. “You get out of your kids what you put into them” well this rings more true when you have a child with severe special needs.  It takes thousands of hours to teach even the simplest levels of functioning. For instance I have been trying to teach my son how to shower himself for over five months and we aren’t there yet. I realize that one day he will hit a wall. He will come to a place that he cannot go any further. His last IQ score was 48… the drs tell me to take this with caution as the test is not adapted for those with limited verbal skills but I am still ready for that wall that he will metaphorically hit. Its coming sooner than later.

The depression, exhaustion, anxiety and anger are very real to me right now. I have watched a few of my college mates move out of state to finish their doctoral programs. I look at my former work co-workers and wish I could be back in those maroon scrubs that remain  hanging in my closet but I just cant. I promised myself I wouldn’t go back. I think the biggest loss in all this autism parenthood journey is the loss of self.

I stood in my kitchen yesterday after cleaning it for the third time and felt so empty. I feel like no one sees me anymore as I match socks and write another autism article because I’m afraid to take the book plunge. My sons therapists come in and out of my house as I watch from a distance wishing deep down there was no need for them, but there is.

I have had people tell me “but your time will come”. I usually smile and shrug it off but in my head all I see is me at home with my thirty year old son still unable to even go to the grocery store because of meltdowns. That’s the truth about special needs parenting when it comes to Severe autism, my time could very possibly never come. I need to consistently change what “my time” will mean. will it mean a walk around the block? will it mean one hour a week of bingo? Who knows what it will look like when I’m unable to play Friday night hockey anymore? That’s about all I have left and even that is losing its luster. I’m old and the other teams aren’t.

My husband is an architect. I set down my dreams to help him attain his. I dont regret this but there are so many days that i watch him get up and go to a job that he loves and feel jealous. We fight about this sometimes. He doesn’t get it. School never came easy to me and what it took to get me through undergrad was an incredible amount of time and work. I lived in my social stats professor’s office and squeaked by with a C. It was the psych that came easy. The english. The writing. Solid black and white was never my Forte’.

I suppose one day I will find my place. A place where I shine even just a little bit. But today I suppose I need to find contentment in the fact of stay at home mommyhood knowing that I am resting myself for whatever my next chapter will be. Lord knows my soul has been in chaos for years. I need to stop chasing something that is not meant for me even though I want it so badly. what matters most is not what you want but what you need am I right?


2 thoughts on “One Step Back

  1. It’s strange I’ve been thinking along these lines a lot recently. I would rather glibly think in a few years I will get my career going again. But the reality is so different. I just can’t see that happening. Maybe it’s just rolling with the punches and if an opportunity comes along being brave enough to grab it.


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