I Am So Lucky… Even on the Hard Days

I have come to this blank page about four times today and walked away without typing a word. As I scramble through my day bouncing from here to there I found myself becoming numb to any emotion floating around in me. From ABA Techs in and out to the carpet cleaning guy walking up to my room and finding a naked boy on my computer playing Roblox its been a day. (Thank God for his inherent kindness)

As I sit here in my room looking at the house behind ours marveling at their perfect landscaping I can’t help but wonder what I am missing. I had over two thousand steps recorded on my knock off fit bit by ten am and yet physically I’m not tired. Why? Because this is my normal. I thought all day about what song adequately fits my mood today and I couldn’t think of one. In one of my attempts to keep my three children off the still wet carpet I loaded us all up into my truck and drove to my parents house but the radio dial remained on search. Nothing seemed to fit. I couldn’t help but ask my self if there really is a song so obscure as to fit my life? I tried to register where I am and I couldn’t. All I could really muster was that everything felt so heavy. My shoulders felt like I was carrying two hockey bags complete with goalie pads slung over the top of them but in this instance there was no promise of fun.

On my three mile drive from my parents house to my house I had to stop twice to separate kids and to put Aiden back into his car seat. I had to lock the window next to his seat as he dangled a DVD out the window threatening to throw it. That’s when it occurred to me that I just wanted to run. I wanted to run so far. I wanted to run to a place where open doors didn’t send me into a panic and make my heart rate soar. I wanted to just turn up the radio and drive. Alone! I wanted to Find an open field and scream! I wanted to go to California and drive the coast in a mustang with the top down and my book in the passenger seat! That’s what I wanted. That’s what I want!

There are days in my world when I’m here physically but not mentally. I could feel the fog setting in today even before I got out of bed. I could feel myself coasting. I could feel the disconnect. I could feel the loneliness and the loss. Today was tough and not because he had a bad day but because internally, I had a bad day. I snapped at him the 50th time he asked me to go to “nana barbs and papa daves house” I got frustrated because he insisted on laying his minion bed spread out on the kitchen floor when I was trying to cook. I got frustrated when the ABA tech said she was not going to be at a session because of personal issues. I got mad as she walked out the door because I couldn’t go with her. There is no escape when you are the parent of autism. There is no clocking out. there is no lunch break. and probably the worst thing is that there are no answers. EVER!! You just have to try this and try that and maybe eventually the behavior will work itself out and if it doesn’t eventually you learn to just accept it as your reality.

He is doing pretty good really. We pulled Ipads. he no longer gets Ipads during the day or during therapy and honestly its been an easy transition. I have found him noticing more and more things around the house and he even sat with us for five whole minutes to watch the Simpsons last night. yep, five consecutive minutes. which in our house is a miracle. Yesterday, we went to the park and he played in the sand and didn’t even eat it (though he did eat an ant but we figured “hey people eat chocolate covered ants all the time”  so we chalked it up as an edible as we laughed) we even put him at the top of the playscape and made videos of he and I dropping balls into a bucket in hopes that him being able to watch this video would alleviate him trying to throw things out of our second story bedroom window (lord knows I’m tired of finding my bra in the back yard and explaining to the neighbor that all the things on the ground were not a result of a domestic fight he he).

Autism is a lot like Alice in Wonderland when Alice says, “If I had a world of my own, everything would be nonsense. Nothing would be what it is because everything would be what it isn’t. And contrary-wise; what it is it wouldn’t be, and what it wouldn’t be, it would. You see?” It’s the very moment you think you have things figured out something outlandish happens like finding your kid on the roof and realizing for the first time he closed the window behind him which is why you never thought to look there because he NEVER closes anything behind him. Or its those outings you are so anxious to take because you know that a meltdown is on the horizon and he does great but then you let your guard down and take him on an outing he has done a million times without incident and you find yourself standing there full freak out mode as he is flailing and screaming on the floor and you are looking for a man that might help you carry him out of the store. It never makes any sense.

I have my days where I am so confident. I call them my “I got this” days. But then I have my days where I am so done, you know, My “I’m tired of all of this autism crap please go away” days. and then there are those, “Meh” days. But the hard part of the days is that I feel like I am all alone in them. My children are just that… Children. My feelings and emotions are not their burden to bare so it is up to me to regulate myself and them. It is up to me to smile when the children want to play even when I’m broken inside. Its up to me to keep the house functioning, dinner cooked, house clean and keep it a safe haven from the rest of the world which is the hardest part. Its hard to create a safe haven in a place that is not only locked and alarmed but it is also a place of employment. a home improvement is no longer just a home improvement it is an improvement in work environment for our techs. from where our TVs are mounted to what TV our PS4 is hooked up to everything is strategically placed for the betterment of therapy. It’s not placed for comfort or convenience.

There comes a time on this journey when you realize that no one can tell you what to do. No one is living what you are living even if they are affected with autism. Every autism is different and everyone is coming at this journey from a different angle. There are varying levels of patience, acceptability a different range of what is construed as normal and a different set of resources. There are emotions flying all over the place and sometimes, if you are lucky, you are able to find someone at the same emotional place that you are and you can meet there. But I think the best part is when you can crawl into the trench with someone and help them on their way out. That’s where the beauty is in all of this. I think the coolest part of this journey is  how you learn to find others. You learn to find them on their journey and just start walking with them. There is no like or dislike of anyone…  its just the idea that “what is, is” there Isn’t anymore room for any other thought.

I don’t really know how to end this except to say that no matter how much I want to run away from all of this there is something to be said for living in the midst of struggle. It builds character, perseverance and teaches us all about love and what that means. I could drive along that coast, I could buy that mustang but so many that have come before have done that. and I can honestly say that no one has ever taken my journey. I have watched my fellow graduates move on to their masters and become psychologists and coveted that but there are certain constraints to all of that. They don’t get to be there to watch the growth. they don’t get to see the everyday. they don’t get to see the person all they are permitted to see is “the lost cause” or the “patient they cant help in three days time”. I get it all. The success, the time, the tears, the hugs and the journey. I am so lucky… even on the hard days







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