Have you ever looked at your life and thought “I need to do better”? I have been looking at my life closer as I try to sift through it all to decide what it is is really should be doing. I’m 34 and Im still not sure what I want to be when I grow, I still freak out when I look at my to do list every morning. I still fall apart at the slights tinge of anxiety. I keep telling myself autism will not take my life away anymore but today at work as I fumbled between calls from teachers and the uncertainty of it all I had to take a moment and close my eyes to collect myself.
It is the last week of school and I am in full out freak out mode. But this year, I think I did things a little bit better than I did the previous years. I hooked my son up with a GPS device so if he even walks out of the house it will alert me… I began my subscription last week and it has been the one of the most relaxing weeks of my life. I was able to sit on the couch for an entire movie this weekend without one outburst of “WHERE IS AIDEN?! as I go running up the stairs in a full out panic. Not one incident this weekend. I would have about ten of those a day. when i was worried I would just look down at the phone to my side and see he was in his room… Its the most amazing thing ever created. Thank you Angel Sense you gave me a portion of my sanity back and my typicals thank you for me not freaking out and employing everyone as we would all scatter and scream “I found him!”
I called Aidens speech therapist and suspended services for the summer. “can we ask for a reason why you plan to end services?” “It’s just too hard to tote three children to and from therapy and I think we can take this speech device from here. It was amazing working with you”. I have been breaking up with added responsibility right and left lately and I am so much better for it. My last big hurdle is ABA. That and I have to really think long and hard about where I want to be. I was offered a job back inpatient… BUT, I kinda have a heart for where I am now. Maybe I need to sit back and just be quiet on this one… Not my strongest suit, patience, but ya know, I am learning where I am and I am making strides, I think I have just been in intense situations for so long that I need to readjust to real life. The straight line.
I have been taking Aiden out a lot more lately and its been relatively successful. Monday, I took him to his school field trip to a park and a splash pad which turned out to be less than a success but he did get to see a firetruck and the firemen were so nice to him which put a warmth in my heart to know that they are taking the time out to get to know our kiddos. Aiden spent most of the time in my truck begging for my phone. we stayed about an hour and headed out. I took him through the drive through at McDonalds where he ordered his proverbial two cheeseburgers and large fry and momma stole the coca cola. We got home just in time to meet his ABA technician and I asked her “how do you feel about an outing? I need to pick up some window locks and door alarms. (It is summer after all and summer means lock down season).
We pulled up to lowes and parked he got out of the car as we left all technology behind. Surely there are no DVDs here so I figured we were safe and I was so so so right. With ABA tech in tow we walked down the aisles talking about life and forgetting about autism. He stood nicely while i asked the store clerk where to find what we needed and followed ups from here to there without incident. he even stopped us at one point to look at some electronic house security system that adorned a logo he favors on the box. We stopped and talked about it and when we needed to move along he walked away still smiling with no problems. As we walked towards the self check out he asked if he could have a bag of Doritos and before I could answer he was standing at the scanner and had it already scanned. I handed him the window locks and stood back as he scanned and bagged all our findings with no help. When it came time to pay he grabbed my debit card right out of my hand and inserted it. It was quite amazing. We walked out and both his tech and I looked at one another in shock. It was short of a miracle really if you know where this kid came from.
There is nothing better than watching someone progress however small. When someone opens up a computer and you see a graph with a line pointing upward. Theres no feeling like it. I got to see that this week in two instances and my heart was so full because I know what that line means. I was told this week “if you dont embrace the data you embrace failure” I say bull on that… Sure, data has its place, but data is one dimensional and only shows what it is meant to measure… One aquired skill can mean so much more than what it is measuring. Ill challenge that statement all day everyday. I say “embrace the data but embrace the individual more”.
I have been waging a battle in my head this past month as I watch the summer vacation coming closer and and closer. Today as I realized through three separate teachers texts while at work that I forgot to send in my daughters school hearing aids and forgot to sign my other kiddos IEP addendum to add social work, and forgot my other sons permission slip for a school field trip I reminded myself that I am not a failure I am just afraid of what this summer will hold. I am fearful of the 24/7 fear I am about to face. I am fearful of a babysitter not showing up for a session, a forgotten open door, an unlocked window, the uncertainty of how to get groceries in the house with autism in tow, the change in my sons aba schedule, the laundry, the housework, the soccer schedules, and whatever else life will throw at me when I am not looking. I am fearful of failing my typical children in my fight to save Aiden. What are they missing out on? How do they feel about all of this?
Today, a neighbor kid down the street looked at me as I was getting Aiden in the truck and asked, “can he talk?” I stopped not sure of how to explain this to a kindergartener and said, “Yes, he can talk a little bit. We are working on it.” and smiled a small little smile to reassure him of the situation and the kid just looked at him and said, “well hes weird”. At that I just turned my head and started buckling Aiden’s seatbelt and said happily “well we gatta go we are late for soccer we will see you later!” I am slowly getting better at finding the answers even if I don’t have a viable explination. I have been more forgiving of myself on this as I have found that the professionals don’t even know the answers to these questions.
“Blue, blue, blue….Circle… Seven… WXYZ Detrrrrrrrrrrroit” he says as he points to the channel seven logo at the bottom right of the screen during the news. He grabs my phone and begins taking video of the logo as he repeats this phrase over and over so he can watch it later. I have gained a whole new respect for this logo. I even painted his room with the idea that someday I might find someone to paint the channel 7 logo on the wall. With him around, life just looks different.
“Are you planning to work full time when the kid gets older” my husband asked me in contemplation this evening after a full day of Aidens ABA and work ABA and soccer practices after missed breakfast,lunch, forgotten permission slips, hearing aids, IEP addendems my thoughts came rushing in. I don’t know what I want to be when I grow up. I want my masters but how? How can i do that when I can barely get a forgotten grocery item with autism in tow. Work is hard… all I could think to say was “yes” and left it at that. I grew up wanting to be a full psychologist. I went to college with that expectation. I hated behavioral psych it was my most loathed class. I found it empty. Here I am working in the field. It has its place though I wish it would overlap with humanistic psychology just a bit more….at all… There are days I still close my eyes and imagine myself driving down the coast in a mustang convertable… but those days are less and less as I realize that Aiden IS my masters degree and my mustang? well, that’s now a three tone dented up rusted minivan with chipping stickers on the windows. (for the record I had to sell my actual mustang when baby #2 came along… two car seats don’t fit so well in sports cars)
The hardest part for me personally in this journey is setting down what I wanted for what is. Some may say that I am placing my own barriers in my way that if I really wanted to do it I would… but at what expence? I don’t know. There are days i feel cheated. There are times i see fellow ex college mates working on doctorates and know that I used to keep up with them academically and yet here I am pigeonholed. I feel so stuck. Lost. I keep trying to tell myself that I am not alone but the comfort in that fact is waining. I don’t want to be mediocre. I don’t want to be average. I don’t want to be silenced and hidden behind the brick walls of this house. I want to be out there doing something important. Instead I find myself staring at words pouring out onto another blank screen filling it with words that really in the scheme of life mean nothing. Tomorrow there will be another blank page and I am not the type of person that finds inspiration in that fact.
I just want my car back. I wanna drive it down the backroads of Ann Arbor. Is that too much to ask? someday maybe.