Sometimes I feel like there are two ways of being. One way of being is superficial. This being takes care of all the chores of the day. This being focuses on accomplishing goals, calling doctors, taking care of the kids, doing the dishes, preparing for outings, taking care of hygiene, watching T.V., vegging around the house, eating junk food, etc etc. Then there is the other way of being. The spiritual you. This part of you is awakened during times of solitude. You feel it when you watch the sunset. It sings when beautiful music ignites a special place inside of you. It feels refreshed after yoga, it wants to have a garden, live simply, focus on what really matters. It admires fresh air on your face. It moves slowly and it takes the extra time to make things beautiful, not just practical.
Sometimes I ache for my soul being. It seems so hard to keep this part of me alive when everything is stacked against it. When taking care of a little one on the spectrum, its really difficult to get into that place of soul being. I actually find it hard to get there with anyone else at all around me. And being in a family, that leaves little time for the soul. Every day has so many requirements and at the end all I want is a big glass of wine and some funny T.V. to relax to. But after so many days of this, I begin to wonder things- like where has the time been going? Its been moving so much faster than it used to. I want to slow down, smell the roses, feel my heart soar, travel, laugh, feel alive. It seems impossible sometimes. Sometimes I forget I even want that.
Music is for sure the easiest way for me to get in touch with that soul being. I'll decide to listen to my own music after listening to kiddie tunes for so long, and it hits me. Its like all of the sudden a switch is flipped on and I see the big picture. I realize the good energy around me, filling my world with clouds and flowers and trees, and its like I haven't even seen them in a while. My heart feels awakened and I remember who I am. Not mom-Kaitlin, not wife-Kaitlin, not student-Kaitlin, not friend-Kaitlin, but just Kaitlin. The essence of me and my place as a cog in something larger, the sense of being apart of something so far beyond me and the peace I find in its intricacies and interconnectedness suddenly implodes in my center.
And then I have to go home, or go to school, or take care of D. I have to call a therapist or do the laundry and I have to switch modes. I can't think of my vagabond soul, longing to see the world and make connections with as many people as I can find. I can't think about saving the Earth and joining the Peace Corps. I have to put all of my dreams that live in the soul being to rest again and focus on the people who need me.
Some days I ache to bridge that chasm. I wonder how it is possible. Its hard to get that soul connection going with someone who can be so distant and that makes it so much harder with D. If I go to that place, she doesn't go with me and I can't leave her behind. Its painful. This isn't who I wanted to be or what I wanted to do. But I am here and I am obviously grateful for the lovely family I have. But some days, my heart longs for the ghosts that are my dreams and the soul that must be quieted in order to do the menial things in life.
Last week we took a trip to Southern California to see family. The last time I made this trip, I was alone, scared, grieving and traumatized. It was the end of August and I flew down with a day's notice to see a pediatric neurologist my mom was able to get an urgent appointment with. Considering the wait is usually around 4 months, I took the appointment without hesitation. I already knew D had autism, but what I knew didn't mean shit. I am not a doctor. So I flew- as an emotionally traumatized mess- with my daughter- also in a state of emotional distress from having an untreated and yet to be understood neurological condition- and it was a disaster.
Seriously, I don't think it could have been any worse. Everything that could go wrong, went wrong. There was screaming. Ice was thrown at flight attendants. Escapes were attempted. Physical restraint had to be used during landing. Routines were thrown in the metaphorical fire pit. Purses were left on the flight. Misbehavior at the doctor's office was at an all time high. Flying home had to occur without identification (seriously, you give that a try). At one point public self-injury occurred. And one tired, emotionally spent mother and daughter, somehow made it home.
I swore at that point I was never flying with her again. It was horrific to say the least. I did not want to ever undergo such a battle again. It was a short trip, flying two of the two days, which didn't help things. It probably also didn't help that D received an autism diagnosis on the second day, at which point I was supposed to turn right around, collect my things and get on a plane. But regardless, I had been scarred and I was not going to do it again.
Until now. Thank you Grandma Ruth and Grandpa Jack for turning 90 and 95 and making me overcome my plane neurosis for your birthdays. I have to say it was night and day. Of course this time I forced my husband along for assistance during the supposed misery that was to occur at the time of our dreaded plane flights, but the golden star of approval has to go out to D. Man have we all learned a lot. Knowing what sets her off and how to avoid it, was definitely a huge advantage, but that little girl couldn't have been more of an angel if I had begged God myself.
She sat in her seat, read her books, played some apps and joyfully giggled during take-off and landing because the sensation was funny to her. Seriously, who took my child and replaced her with this angelic being? She sat in her seat all by herself and never once even considered getting up and running away. Needless to say, I was floored. She also kept up her angelic composure up for nearly the entire 5 day trip. I couldn't have been a happier moma.
Now that we're home, she has of course returned to her devilish ways. It doesn't help that D has come down with some sort of illness involving a high fever and congestion. For the time being I am going to relish the wonderful trip we had (Thanks to my MOM!), turn on some music and drown out the screams emanating from whatever meltdown occurs next :)
It seems that I will be learning lessons on this journey for a long time coming. This week I had a big realization about D. The shades of gray in our life are making her life miserable, which makes our lives miserable. I really didn't understand before when parents would describe their child's need for routine. Some people would say their children craved routine. I interpreted this as meaning that routine is only necessary if your child gets upset when things don't happen at the same time or in the same order every day. I didn't want D to become rigid, so I never followed a strict schedule with her. We generally do things in a similar manner every day, but things have always been really flexible in this house.
But now I'm starting to realize something. D craves routine, just not for the reasons I thought. Ambiguity is distressing because she doesn't understand the expectations of her and her surroundings when we live in the gray area. So let me give my best example. We used to only let her watch T.V. (her most highly preferred activity) for an hour in the morning before her therapies began. AND THAT WAS IT. No if's and's or but's. And she was fine with it. She never even considered the possibility that T.V. could even occur at another time of day. Well, a few months ago we wanted to return to rapport building with her therapists when she was having a hard time. We thought if she could sometimes watch a short video with them or use it as a reinforcer every so often, then she would pair that with the concept of the therapists and it would be good for rapport. It did work, she liked the therapists more, but it was a trade-off for a different problem I hadn't expected. After that she started asking for it ALL THE TIME. I mean every 5 minutes. And because sometimes she got it and sometimes she didn't get it when she asked, she kept getting more and more frustrated with this concept. I didn't know what to do, though it seems so obvious to me now.
The problem is that she will ask for this item, and sometimes she will randomly get it (because I cave or the therapists are there) and sometimes she won't. And so it has created a situation where she is constantly asking, being told "no" more frequently than "yes" and then randomly being rewarded for no obvious reason. And all those "no" answers she is getting are leading to major tantrums and turmoil in our house.
And that's not the only example. At least we have stayed firm with some things. Nap time never changes, nor does bed time, bath time, dinner time or supplement time. Which means we don't have to fight these things. But with other less obvious things, like making D walk with me on outings rather than carrying her, I have not been consistent and it is creating a lot of turmoil in our life. Sometimes I put my foot down and sometimes I don't. For someone with autism, this is a major problem. I am confusing her. She doesn't know why some days she gets what she wants and others she doesn't.
Its time that I accepted that D needs me to pick our battles. Going back and forth on them isn't going to work. T.V. time needs to be clearly at one time a day only. She needs to be required to walk with me at all times or I shouldn't require it ever. She either needs to be required to sit at dinner or not. The days and times that we go outside for the park or walks need to be outlined clearly and consistently in her visual calendar and not given at random when she requests it. It is my job to make the rules and make them clear. It is also my job to create a routine that diminishes the amount of frustration is D's life so that what is expected of her is very clear.
I am a problem solver. Most people who know me well can attest to this. I see a problem and I become obsessed with finding a solution. It is one of my greatest qualities because it has allowed me to tackle things a lot of people wouldn't be able to face. I work tirelessly, until I find an answer that can bring me peace of mind. I chip away at each possibility: researching, feeling, thinking, asking. Always asking. I intuitively know how to look at something from all angels and the best part is- I can actually put myself in the situation and examine how each solution would make me feel. Only I don't merely imagine how it would make me feel, I take myself there. I actually become completely enveloped in it, as if that path has happened. A lot of people have similar qualities about them, but many who know me would agree that I have a certain intensity and tenacity about my approach that is fairly uncommon.
And that's probably due to the obsessive nature of my trait. This great quality is also my inner demon. Sometimes its best to just stop. Some things don't have solutions that can be imagined in one night. Some things take time. Some things take hope. Some things are simply 100% out of my control. And even yet, some things don't have a good answer. Sometimes the answer will be one of pain regardless of whatever skills I have. And when that is the case, I clench hold even tighter. I wrack my brain over and over, rolling the possibilities amongst each other like powerful waves crashing in my gut, begging for it to end. I find myself lying awake at night with a chest full of pounding, ice-cold steel spreading across the trunk of my body until it finally reaches my limbs and I can't help but let the panic set in. The realization that this situation is not one that my problem solving skills can fix. I am trapped.
I would say this is the number one source of agony in my life. When I was younger, around 15, I started thinking about death. Not in a morbid way. Not in a suicidal way. In a realistic way. I realized it would happen to me. It would happen to everyone I could see around me. It was only a matter of time. Here we were, investing everything into this life, pretending things mattered, when ultimately we all would end up the same- in the ground. It scared me. It more than scared me. It changed me. This was the first unsolvable problem I encountered that took my mind hostage. I raged against nature, against the universe, angry for the lot I had been given. I felt it was cruel to be given such a wonderful life, to be put here in the world and given no explanations. Why do humans exist? Why does anything exist? What is going on here? It felt like a ride with no exit. Stuck on a roller coaster, that eventually drops off into a great, back abyss called death and you have to keep riding. I looked for escapes, but there were none. And I panicked for a long time before I relented. The whole time there never was an exit, and I wasted a good portion of my teen years filled with anxiety over something I was powerless to. I could have relented long before and seen the beauty around me, learning to enjoy the ride rather than be tormented by it.
And I have to say, I've changed very little. Autism threw me into a similar whirlwind. I looked for the exit routes, I searched for the answers and ultimately, the only one I could find I did not like- time. Only time will tell how my little girl will fare. I can only be responsible for as much as I can do to help her in the right direction, but there is no way to tell where this path leads right now. Another answer I did not like was the frightening truth that it wasn't all up to me. I could not bear full responsibility, though I would like to. Much of the outcome would depend on my daughter. Being a guide is all I can be to her, but in the end she is the one who steps where she steps, not me.
Why I try to bear the burden of others' decisions is beyond me. I so desperately want them to make the choices that I think will make life easier and good. But in the mean time I waste a lot of energy worrying, fighting, and filled with anxiety about things beyond me. I can only hold myself accountable for my own actions and feelings, but not those of the people around me. Their feelings, their decisions, their path is ultimately their own.
My fists have been clenched so tightly that I have not allowed any room for faith. It takes a whole lot of faith to get by in this life, whether or not people even realize they are utilizing it. Sometimes you have to open up your heart, release your grip and say "I did my part, the rest is up to you." All I can do is invest in the things I love, in the people I love and have faith the I can handle whatever comes from that. If it is a dark, scary place, then I can say I did my best. But my best is all I can do.
"If you don't like something, change it. If you can't change it, change your attitude." -Maya Angelou
God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can and the Wisdom to know the difference. Even if I lose everything, grant me these things so I can conquer the pain, loss and grief.