rambling

I wonder if he knows how much i am hurting as i sit listening to this music hour after hour with these headphones protecting me from the real world. I look at the empty bottle next to me connecting to the empty space inside. I wonder if he knows what he has done. I close my eyes and sing “breathe, just breathe”.

I come from a life of broken promises. Hidden bottles and nights spent in the back seats of cars. I wonder if he will understand what damage he has done. There is no going back to fix what has been shattered. There is glue but that just doesn’t stick in the cold that surrounds it. I live in the dark hiding behind the walls that have taken an innocent heart and hidden it. 80 proof hides the truth that theres nothing left as I struggle to make through the night. He has no idea what he has done.

Whether i stay or I go this house is empty. There is no love here. There is mere existence and emptiness. I wonder if he ever wonders why I lie awake at night as he sleeps while i write the words in code. I wonder if he will ever feel it. The lost girl laying three rooms away.

The dishes are done, the clothes hanging perfectly as he likes them as he sleeps and I lie there wondering if i have forgotten anything, but then remembering I’m not the only one. I wonder what its like to look in the mirror knowing I am loved. I wonder what its like to look in the mirror without sensing fear. I wonder.

What is a dream if it always falls flat? Dreams of kids, of sports that end in therapies and silence.  there is no freedom here and I’m tired of hiding it. I’m tired of hiding behind all that has been dealt at no fault of my own. I have been the strong one for too long. I go through the papers and the evaluations and blood work and see that I was the one that was there. always there. always standing firm. steadfast. strong. focused. alone.

i talk to God everynight with no reply. I watch the moon and sit alone in the darkness wondering when the world might find me but no one ever comes. I take a deep breath of the crisp air knowing no one will ever find me. There is no rest here. There is no freedom to speak as I would like to. my words are code for what is really happening inside of me. i cant un-glue this hourglass. Time keeps ticking by taking what hope i have left with it. Breathe…just breathe.

mid morning ramble

The house is empty but I can still hear the voices of the children echoing through the walls. The evidence of their existence reflects off the stains in the carpet as the sun shines through the window. There is music playing in the background as I try to find some semblance of peace as the world continues to fall down around me.

My mind returned back to my favorite book I was FORCED to read in high school. I think my sophomore year The Bean Trees by barbara kingsolver. Since its initial reading I have made it a point to read this novel once a year due to its profound connection to my inner self. There was a line in the book that I have carried with me and it continues echoing in my mind “It felt so good to laugh she feared next she would cry”. What would that be like. To laugh. To laugh without anger, resentment, fear and restraint just beneath the sound?

What would it be like to look in the mirror and feel adequate? What would it be like if i could pen whats really racing through my head at night? The last few days I have tried to figure out what I am feeling and its like there is nothing there. I can see the world around me but cant really reach it. He tells me “it will get better i promise” but then I wonder if the things that hurt us can ever be the things to help fix us.

My soul is tired. From battling the autism with my son and everyday life as yet another parent approaches me confirming my fears that I’m losing my middle child as he teaches her younger son to say bad things. Another conversation on the sidewalk, another parent another “problem to solve” another “behavior” as I try to reign him closer when the inner parts of me just want to run and hide. I’m trying to hold this all together on my own and the harder I fight the more control I’m losing.

The house is a complete mess yet I sit here typing this out. I put a load of wet bedding into the washing machine this morning and wondered what the point of this was. I mowed the lawn yesterday and I am sitting here staring at the perfect lines in the grass and wonder when I will have to do it again. The dishes in the sink remind me that my work isn’t done but all I can do is sit here staring out the window wondering if there is anything out there for me.

Despite it all, I keep telling myself that this is temporal. This life is what… approximately 80 years right? so I have 45 more years to figure it out. Why I’m finding peace in that I’m not really sure but it seems to be settling me a bit. Either its the perception that I still have time to figure it all out or maybe its the idea that I only have to do this 45 more years before I’m Free. Either way, its working.

 

An Empty Disney Land

I am always happy when the crickets start chirping again. It means that the night is beginning and the chaos can settle for another few hours. When the sun sets is when my soul comes alive. Its when my mind meets my heart and I am able to dream about the person that I want to be. If I am honest who I want to be and who I am have not yet found a balance. I want to be different. I want to be happy beyond the surface. I want the dark thoughts to go away. I want the hopelessless to be replaced with love and happiness.

I want to be loved beyond any limits and I want the safety to love without restraint. I want someone to see the soft parts of me and appreciate them without trying to attack them. I want to dream like I did as a young girl full of wonder that maybe the beautiful parts of this world could outshine the dark parts. I want to go back and not deny myself the tears that needed to be cried. I want to go back and say “no”. I want to go back and run away from that dead body when every party of me wanted to run as I ran that washcloth over his face. I want to permit myself to say “I cant go to that morgue my soul cant handle it”. I want to go back and stop protecting those that had hurt me so.

I have come to a point in my life where I want to look in the mirror and see the woman looking back at me with black and blue hair and say “that blue suits you”. I want to find that place in this world where it is safe to open the most vulnerable parts of me to the fact that autism is not what is hurting me the most.

I want to be different. I want to be like the other women that i see with long perfect flowing hair. I want to be like the women that always seem to have it togther. I want to be like the women with the perfect house, well adapted children and perfect marriage. I am so tired of feeling lost and tired. Tired of hiding the fact that nothing is perfect.

I published once again in Autism parenting magazine and my article was even featured on the cover this month but as I look at the cover I cant help but see the heartache behind the title. I can’t help but see the years of being bullied over writing silently in the back of the class room until I would eventually stop going to class.

There have been some happenstances in my life lately that have made me look at where I have come from. I know there are many around me that only see me as an autism mom but the truth is there is so much more to me. I guess you could say that in a lot of ways psychology ruined me. It took a nieve soul and twisted it, turned it and broke it. In a lot of ways I dont know what reality is. I never had anyone look at me like I am a cynnical person until today. Today was the first day I caught it. Today was the day that I truly recgnized how much i really have changed.

I guess sometimes it takes a run in with your past to show you how much you truly have changed. Until today I didn’t see how much of myself I had lost. Today I texted my mom “am I going to be okay? Because right now it doesn’t feel like I am going to be”.

I am not a fan of daytime. I hate the sun. Once that sun begins to rise I feel myself die just a little more every day. I don’t want to be this way but this is the way I have always been. The night gets me. The softness, the quiet, the shadows that allow for interpretation of what is causing the shadow. The lines of the world seem less rigid once the crickets start singing.

When the rest of the house sleeps is when my soul is allowed to awaken within me. During the day I press it all down to finish the dishes, get the kids to soccer, match socks, do laundry and ask permission from my husband for a quiet moment. Even now as i sit with my headphones on I am listening to a song about change as I watch that familiar scene of my son asking for math homework help as my husband ushers him to wait until commercial.

This morning. I sat on the porch after a sleepless night and as my last two children scurried off to the bus stop i pulled my knees up to my chest and cursed the birds for singing. The lack of cricket sounds left an empty space in me as their song had been the one thing that had gotten me through the long sleepless night. More and more nights have been ending in anger and emptiness. My bodys outline is evident in the large couch in our living room as I have been finding my home there late at night. Sometimes, I open the large sliding door to let the sounds of the night come through and I pretend I’m sleeping in a campground somewhere where nothing matters but who has the biggest campfire.

Take me back to a preacher and a verse. what an amazing lyric. I want to go to church. I try to walk on my own but i keep ending up lost but i don tknow how to reach out. I don’t trust. I don’t depend on anyone. I feel like I need to go back to the love I used to carry within. Unadulterated dreams of what this world could be.  Take me back. Take me back to days of rollerblades and crushes. Take me back to a life where going to 7/11 was a fun outing even that has turned into fights in parkinglots because there are DVDs on the top shelf. Nothing is safe.

Psychologists consistently tell me “medication” ‘OCD” “Anxiety” “ADHD” “depression” “Bipolar II” “Hypomania” ” they cant put their finger on what is up. I have more more diagnoses in my life and lets not start on the list of medications that have adorned my medicine cabinet shelves that proved nothing more than a sleep aid. I quit asking for professional help. What if, my issue isnt medical, what if its simply a symptom of a broken heart? before you all jump ship lets think about this. like really.

What happens when your hopes get all up over something you think is going to be the greatest thing in the world like say disney world. You spend years dreaming of how great disney world is going to be  so you save up all your money, you buy your tickets and count down the days until you get there only to find that mickey left minnie, daisey is fighting with donald all the rides are shut down because the workers are on strike so you end up wandering aimlessly trying to find something that somewhat would fill your expectations only to get on the ride and its going slower than it should because of the rain. That’s the best way I can describe how my life seems to be going at this point.

It wasn’t supposed to be this way. My kid wasn’t supposed to be sick. my other two kids weren’t supposed to be wearing hearing aids they were supposed to be playing hockey and we should be spending our time and money on hockey tournaments not on therapy. I was supposed to be the center of my husbands universe. Silly me. I miss the girl I used to be. full of dreams. full of hope. full of love. I need hope.

 

Beauty Beyond the Data

I stood in the bathroom clicking the keys in my sons ABA data program and for a split second everything went blurry. I looked up in the big mirror in front of me and wondered what life not measured by data would look like. In ABA they teach us to define behaviors objectively. They tell us to throw out emotion and write down only what is observable and measurable so as not to skew any data or to create any false pretense regarding functions of behavior but then isn’t all behavior in some way facilitated, at least in part, by emotion?

I have not written much these past few months as our summer came to a close I decided to make a job move to another ABA company that would offer both a chance for me to grow in my current job role and to help me advance to a higher qualification which has proven to be both exciting and overwhelming. I have learned a lot more about the field of Applied Behavioral Analysis and its inner workings. I now have had the opportunity to get my feet wet working center based ABA which has proven to be my biggest challenge.

It seems between working in ABA, receiving ABA services for my son and studying for the Registered Behavior Technician (RBT) exam my life has been run by data. Trial this, DTT that, Maintenance, behavior momentum, reward boards, preference assessments, DRI, DRO and as my head spins I cant help but wonder how long it will take for me to master this. (my fellow ABAers will chuckle at my word choice yes that was on purpose)

You see, I have never been a black and white type of person. In my eyes there is always another dimension that many cant see. Sure there is black and white some call it gray area I choose call it open space. Its that space that we all live in that is, in some way, separate from the rest of the world. It is in this space where our perceptions of our word are formed as they connect and bounce off both our emotion and all of our sensory input.

It is told that how we experience the world is how we place meaning to things. For instance, my grandfather always loved Harley Davidson motorcycles so to me, since his passing, everytime I see a Harley Davidson motorcycle my heart swells in missing him whereas the person sitting right next to me looking at the same motorcycle might be annoyed by the noise because they have a separate experience with motorcycles and may cover their ears as it approaches as I close my eyes enjoying the loud hum as it passes by.

Why am I talking about this? What does this have to do with ABA? It has to do with what I have experienced in my working with my sons treatment plan. There are days that I am able to separate myself and just do the data and talk objectively as he has a difficult behavior. Days that I am able to “be therapist not mommy” but then there are moments, like tonight as hes screaming and biting his hand and I stand frozen not sure which part of me should take over. Its this a job for mommy or is it a job for therapist? The past few weeks I find that line blurring as I become more and more immersed in the vocabulary and the culture of the center. Whats hard is to look at the children younger than my son and separate myself. If I am honest, Its one of the biggest challenges on this journey thus far. Looking at the little children that resemble my own bigger child and knowing what lies ahead for them and their families and while it brings me hope it also makes me sad knowing that they will have days where they will just want to give up and days that nothing could bring them down and I can’t help but feel helpless to a point.

Today, after arriving home from another day of training, I opened all my windows and just started cleaning. I took all my books off the bookshelf and surmised it a good idea to purge them. The less chaos the better. I got rid of every book I owned that was not about autism and still my five tiered bookshelf sat quite full and I couldn’t help but stand back arms crossed realizing just how much of my life has been taken over by Autism and its many splintered facets and decided to just set it all down. I opened the windows and the front door to let the light in and turned off the door alarms. I turned off the radio and listened to the hum of the neighbors lawnmower and breathed in the smell of fresh cut grass. I remembered how as a little girl I would listen to the sound of morning doves and wonder why I couldnt ever find the Owls in the trees. (I would be 23 years old before I would learn the true origin of the sound and laugh at myself)

Its strange how long I can go lost in a world of autism without realizing the emotional denial I am forced to live under. Really, it goes far beyond the emotional denial, its the denial of my senses to feel the sun through the windows, the sounds of life outside as the rest of the world continues spinning, the denial of social interaction that does not include the word autism or therapy, there is so much that even when I am alone I find myself still placed under the rules of its existence.

I wish I could paint the picture better. I fear that I am leaving a sour taste with my explaination though that is not my intention. I think that what I am trying to say is that I feel lost in this world somehow and I’m not really sure how to find peace with both of the worlds in my open space within. The chaos is no longer in the autism diagnosis its self for me the chaos is in realizing that the autism diagnosis is not all there is and maybe sometimes the mommy part of me is the best therapist and I need to stop denying myself and my son the beauty of life beyond the data.

 

 

 

A Summer of Lessons

This was a strange summer. It was a summer of growth thats for sure. I have learned a lot. I have learned that sometimes all you need are the right tools for a task and that task becomes easier. Sometimes not even a task. I have learned that sometimes forty dollars a month is all it takes to get your life back. I have learned that summers pass faster as my kids grow older and their worlds expand beyond family and the four walls of our home. I have learned that autism is sometimes one of the greatest gifts God has ever given me.

Its hard to explain to those on the outside of our little world what a small little GPS attached to my child can mean. To me, it meant open doors to let just a bit of light in without fear. It meant a summer without an interaction with police due to his elopmement behavior. It meant him walking away from us at a festival while we tried to help a friend to get a fan out of her daughters hair and me not having that freakout heart pounding kind of fear when i realized he was gone in the forty-five seconds of my attention being diverted to help with a small crisis. As my husband went running in ciricles I calmly reached down into my bag and opened the angelsense tracking app and found him within one moment. My husband ran to me, face white as a ghost and asked, “why are you so calm?!” I just waved my phone in his direction and said “because I knew he wasn’t lost.” You see we had a few tense conversations about the monthly payment for that GPS program and it was at this moment that he said, “wow, I get it now” as he walked away from me to calm himself. I kinda smiled at the fact that I had won that argument and of course I was happy that the rest of my day would not be spent in tears over the fear of losing my kid and the mass exit of adrenaline that would take days to leave my body post elopement I had grown to know so well.

The children start school next Tuesday and I am happy to report that it was one of our best summers. With autism you never know what you are going to get. One amazing day can be followed by, for a lack of better terms, a day from hell and you cant barely recognize the child flailing and screaming in front of you. But this year, I don’t know if something clicked in me or in him but I think this summer we had it, for the most part, figured out.

I made some huge changes this year. I spent a lot of time soul searching and I think I made some peace with this diagnosis that I did not have before. I did not fight to take him to things I did not think he could handle. I reminded myself over and over that my desire to get him out of the house all the time is not due to his need but rather my discontentment with what I THOUGHT he needed. I studied, studied and some more about autism and Applied Behavioral Analysis and that increased my confidence exponentionally. I used to depend on my Techs for everything thinking I could not do it but a beautiful child that is not my own helped me to find the confidence I needed to help my son. Proving once again that we learn more from them than they learn from us.

I made a job change to a new ABA company and am working on a higher certification in the field of ABA. And while using the  services of ABA has been great up until this point I feel that the greatest benefit has come from me actually learning to perform the services he required.

aidendata

*This is my sons ABA data that I now run with his other tech*

Yesterday, as we walked through a very crowded festival I smiled as he followed without us carrying. His restraint wheelchair never left my truck. Which was a great feat for both he and I. He had learned to function and walk with us and I had learned to conquer the fear of traveling with severe autism in tow. He got on and off rides and I stood back as he got on and off the rides letting the workers help if he needed it. I let him have space and ya know it was pretty great.

THe other day, I took him bowling with our ABA technician and aiden pointed to the vending machine and said, “I want Dr. Pepper please”. I gave him a dollar and the tech went to walk with him and I said “let him go, stay here lets just watch”  and I just stood there with my arms crossed and watched him walk over to that machine put in his dollar and choose his dr. pepper. I didn’t even know he liked dr. pepper! He returned to us and put my hand on the can to ask for help in opening it and I opened the can and giggled as he quickly opened it and began drinking it.

What am I learning? I am learning about what it means when my anxiety is kept in check and how to back off and let him live. I am learning what independence means and part of that means letting go. Yesterday, I took him to Good will at his request and walked in confidently, I knew why he was there, he wanted dvds. Before we entered the store I told him “Ok, Aiden you can only get two”. As he looked at the dvd supply I stepped away (with him still in sight) and looked at the music CDs and slowly moved farther and farther away. And ya know,he did pretty great, Crouched on the floor with the dvds on the floor all around him I watched the other patrons as they walked passed him and most of them smiled one even said “hello” to him. I did not walk up or say “he has autism, he will stay here all day” I just stayed back and watched how it would play out. and guess what… Society adapted. He had a minor meltdown because he wanted five DVDs and screamed and began to fight me but on my own I was able to talk him down to three and at the register I asked the cashier to hold one behind the counter and he paid her his 6 dollars and I had him put out his hand for change which he took and put on the counter. He walked out happily with his two DVDs. Maybe it wasn’t as fluid as I would have liked but what happened in that store and at the festival this weekend left me feeling, for the first itme, like maybe just maybe we are starting to figure this autism stuff out. We not only survived another summer, but we grew, we learned and we thrived.

aidenhappy

 

 

 

 

Epiphany? or Am I Just Bitter?

My mind has been all over the place lately. I’m sure it has something to do with the multiple kids running and out of my house in a constant basis despite the laminated sign on my door instructing all the kids to not knock we are busy. Yes, it has come down to a sign on the door instructing the kids to, for a lack of better terms, “bugger off”. You see, on my street there are about 5 houses of kids that run from house to house to play which is great. Truly it is. But sometimes I just want to stop hearing door alarms going off constantly and seeing little faces pressed against windows when I finally got my kids to rest which inevitably results in the upheaval of what I thought would be my chance at a quiet moment locked in my home.

Today, I guess you could kind of say I “got mean”. After the five millionth time of a kid opening an alarmed door and not going in or out just opening it to open it and hearing the big electric garage open for the third time and walking out to find them hanging from it as it went up my frustration level grew enough that I walked out into the garage and said “that’s it! Everyone out of the garage! I am done with extra kids! Go! get out!” with that I closed the big garage door as everyone looked at me wide eyed and Locked the electric garage opener. I watched as the kids still didn’t leave but rather relocated to my front porch where they continued opening and closing the front door with the “ding! ding! Ding!” of the alarm. I opened the door and angerly said “JUST GO! GO play at home!”

I had been playing this scenerio in my head for weeks. I had tried texting parents. I had tried relocating the kids. I tried signs on doors (which to one child in particular meant to just try another door) I even tried the nice “we will be able to play in two hours” approach only to have the same child arrive opening my door and peeking in asking where my kids were five minutes after our conversation.

I don’t mean to write this as a venting session though that may be what it seems but rather as an example of who I am as a person. You see, I could have just said upfront, weeks ago, “You are bugging me go away” instead my empathetic side would kick in and I would quietly “take the abuse”. I would clean the messes that were left by kids that were not mine. I would frantically search for my autistic son who has a tendency to run away everytime a child would leave a door open (which was multiple times a day) I would apologize to therapists for the disruptions this would cause until today. Until today when it all boiled over and I had to “get mean”.

Why am I like this, I wonder? What is it about me that allows my life to become such utter chaos over things or people that are not my responsibility? Why do I continue to sacrifice myself and my own mental health. Yes, my own mental health, for the good of others? Because really, in the end, is what I am allowing really good for the children? I mean allowing them to continue knocking when there is a sign clearly placed does not teach the children about respect or what it means to accept boundaries. Rather, the opposite. It teaches the children that you are not required to think of the needs or feelings of others which in the long run will cost them healthy relationships.

In all reality, I am not much of a kid person but, for some reason my home always becomes the hub for neighborhood kids. This happened at my previous home as well. The moment my car rounds the corner before I even pull in the driveway three kids start running and chasing my van asking where one of my kids are even before I open the drivers door. Dont get me wrong, I love having kids over but it always seems to become overly excessive. But this is just an outward example of what it means to be me.

I have often been told that i am “such a hard worker” that I am “great with patients” one MVP award from the hospital said “sue cleaned up vomit and feces all weekend when all the patients were very physically ill without a complaint”. A virtue? Is it really a positive virtue to be willing to do what others will not without complaining? At the time it seemed like a compliment. I mean it was meant to be and i placed it in my portfolio but looking around me now I have to wonder if I was just doing it because thats “just me”. You see, Its just like me to never say “no”. Its just like me to take on more work to “help others” when really in the end its me doing the work for them at the expense of myself. I have brought myself to a breaking point I think. I am at an equivocal point in my life where I’m not sure if i am looking at an epiphany or becoming bitter in my old age. Or maybe, I am  finally becoming privy to the cycles of relationships in my life.

Looking back at many of the relationships in my life be it romantic, professional or frienship I cant help bu consistently note that lack of something. And now, as I sit here rocking in the rocking chair because I cannot sit still because my mind wont quiet and my body remains on alert ready to clean something or jump at a door alarm I cant help but wonder what it will take to calm myself after years of saying “Yes” or “sure” or “yeah I can do that” even as I secretly gag whilst cleaning up vomit from a patient detoxing from alcohol.

I am a “yes” person. I am that person that is “not afraid to do anything”. I’m really not. If someone says “can you…” 99.9 percent of the time its a “yes I can” even when my plate is teetering. I always hear this phrase “I don’t know how you do it”. Truth is if I were to answer honestly I would say “I don’t know how not to”.

I have cleaned up dead bodies and taken them to the morgue despite my intense fear death. I have cleaned up vomit multiple times despite my utter disgust and inability not to gag at the sight. I have sat with people I was totally terrified of without blinking simply because I was asked to. The result? Nightmares for weeks, anxiety levels through the roof and excessive motor activity to keep from thinking about it without ever telling anyone out of fear of what they would think and returning for more the next day. I can remember thinking after an intense situation on the unit and trying to hold it together until my shift was over “but everyone else seems to be okay with it so I have to be to”. I sat in my car that night near the detroit river and stared at the water, sobbed and never told anyone how scared I was. But that’s just me. Completely broken inside but holding the appearance of a rock in front of everyone else because I know how much everyone needs that one person to lean on.

Needless to say, I am pretty exhausted but don’t know how to rest. Despite the nine hours of great sleep I have to assume that the rest that I need will not come from sleep. I think the rest that I need is to rest in the fact that I cannot always harness the hurt for others. Sometimes, they will just have to make their own meals. Sometimes, I will have to “be assertive” and send the neighborhood kids home. Sometimes, my lawn will not be mowed and sometimes my sons therapy will have to be cancelled due to me flat out not wanting to do ABA that day. I think allowing my son to sit on his iPad for a day isnt going to kill him despite the ramblings of professionals and publications that say that this is so detrimental to his development. I guess I’m coming to a point in my life where I have to decide to set some things down for my own good because flat out my thoughts are all over the place and I need some time to think and feel for myself instead of bearing the weight of everyone else I need to feel my own weight for a while.

The Forgotten End of the Spectrum

Today as I watched all the kids playing in the backyard enjoying my sons birthday party I sat quiet for a moment as I pulled out my phone to check the GPS that is attached to my special needs son just to make sure he was still in his room. I sighed a bit inside and wondered if it would be worth it to try to get him to join in the fun but then I reminded myself that he is happy in his room. He is happy with the quiet, his sling swing that hangs from the ceiling and his obscure YouTube videos of people opening Dvds. I let him stay in his happy place and reminded myself that this is okay. He has his pizza and his cupcake but I still felt that inner voice asking if he really has all that he needs.

The thing about caregiving an individual with autism is the wondering if you are really doing what will benefit you emotionally or what is benefiting them emotionally. It is the the constant questioning whether an experience is really worth the battle. I have found myself asking this question more and more as he gets older and his outbursts grow with his age. Two years ago I was all about inclusion and getting him out of the house for new experiences but in the course of the past few years filled with many types of regressions and skill acquisitions I have  found myself choosing the path of staying home. I have not had a birthday party for Aiden in the last two years because he prefers instead to be left alone and I learned that the partys I was throwing and placing so much work into weren’t for him. They were for me. Admittedly it took me much longer to come to terms with this fact than it should have. I guess in a way I just wanted him to have what every other child has but I was acting out of expectation not reality. The reality is that he is different, he would rather have people come one by one with used dvds, more chew necklaces wrapped in paper he can tear open on his own and for the people to just go.

I thought about teaching Aiden to pedal his bike but then he hates to be outside so how does that increase his quality of life? I have to ask where is the line between introducing new experiences for life fulfillment and forcing him to do things he hates because I feel I am obligated to or because MY soul needs him to experience it?

There are times at home when he feels almost like a ghost in the house. You don’t see him much until the internet goes out or he needs something like popcorn for the third time that day. There are days I want to reach out to him but that’s not how autism works. “I love you Aiden”   “blue, blue blue WXYZ Detroit” he says back quoting the local news station’s call numbers. Surrendering to that familiar wall that we autism parents know so well I repeat his scripted words with a smile on my face as he flaps his arms and runs off moaning happily. I smile inside for just a moment until the room falls silent once again and I am left empty with only my thoughts.

It is so hard to know that he is getting what he needs. Sure he has his own room, he has a family that loves him, he has food, showers when he needs them and the house is pretty well set up for him but then what about emotionally? What am I missing? Is he happy? Is he content? Is he hurting? Am I doing enough? Not enough? Am I way off or am I right on the mark? There is no scale of right or wrong when it comes to knowing. Autism is a world that everyone says is so black and white but to those on the outside caring for individuals on the spectrum its gray as gray can get. Its dark gray, its light gray and everything in-between. There is no manual to guide us despite all the guidebooks written by professionals, Ph.Ds,  Psy. Ds, social workers and the like. I don’t open these books anymore. The books I want to read are the true stories written by parents and those on the spectrum. The moment I open a book and swiftly look at the Index and see the words “Chapter 1-What is autism?” I immediately close the book and put it back on the shelf because I know that book is out of touch. I want to talk to someone who is living it. I want to take a walk with someone who wears the same old worn out sneakers I do. I want to look in someones eyes who bear that glassy tired look surrounded by that puffy darkness that we cover so well under our foundation. I want to feel the uncertainty in a hug and just let it pass between us. Autism parents. The only ones who get it.

I suppose its safe to say the loneliness is getting to me. The isolation even more so. Yesterday as I scrolled the contact list in my phone I couldn’t help but notice that my contact list is dwindling. There’s no anger in me It comes down to one thing, I cant get out to see people and while other’s lives continue mine seems to be standing still. There is a special needs group that meets in our area that offers sports for our children which I have tried but my son wont catch a ball so baseball is out and bowling proved to be a flop because of the TVs at the alley so each week As the pictures of my friends flood my news feed I send out a like and smile as my phone sits silent. Finally yesterday I couldn’t take it anymore and called a friend and just to hear a voice on the other end talking about something other than autism or therapy was amazing.

There’s something about severe autism that places you in a whole different bracket of autism that our society seems to forget. The part of autism our society knows is “quirky”. The “Sheldon Cooper” definition. Cute, funny, idiosyncratic yet brilliant. I have met many such children and they are definitely amazing people and I absolutely love their company and wit. But what society fails to see is the other end of the coin. The “forgotten world” of autism that even the autism community seems to have forgotten.

What do I mean? Let me paint a picture for you. I have been privy to a few “special needs groups” and please know that for these groups it is amazing its a wonderful thing… Until you begin to realize after each special outing that you spend the drive home in your car crying because your son is lower functioning than the others and the outings planned for the group are beyond your sons abilities. That’s the severe autism no one sees. Its the mom sitting quietly at the table surrounded by all these children who supposedly have the same disorder as your child and are sitting there talking, relaxed, as your child is sitting on your lap eating the napkin instead of the pizza.

After a while I gave up going. I think its just part of the cycle. Maybe In three months I’ll be good to go again. Maybe Its that I am not physically able to battle him physically anymore so I am fearful to take him out anymore. Or maybe, Its that I am finally coming to terms with HIS reality instead of mine.

But what does that mean in my world? It means trying to find contentment in the quiet moments. It means allowing a down moment instead of racing here to there and battling a world not set up for Autism. It means a shorter contact list but more time for contemplation. It means isolation. It means intense mental stamina. It means taking in the little things like the blue jay that hangs out by bedroom every morning or a freshly mowed lawn or taking an extra long shower without having to run out in a towel three times to make sure he hasn’t run away.

Life with severe autism is lonely. Its not talked about much. The screaming, the yelling, the meltdowns in public, the judgmental looks, the confused stares, the schools that have no place for your child, the diapers at 7 or that feeling you get when you see a typical kid at the same age as yours and just stare because that is what your child would be doing if they were “typical”. I have talked to a few ten year olds and I ask them whats in, whats hip, what they are in to and I take those conversations home with me only to see my son watching “Kermit’s swamp years” on the dvd player rewinding the opening scene incessantly. There are days ill admit I give up. There are days I feel so depleted that I don’t even know where to start and so I don’t. I just make his favorite food so he will eat and sit in the living room listening to the slight sound of dvds opening and closing in the next room while reading a book.

I have to know that we will be okay in the end. We are on a journey that is leading us somewhere and in every journey there are going to be dark places especially when you are in a place you have never been before and the road hasn’t been built yet. It kind of reminds me of in Alice in wonderland when the creature sweeps up the road just behind alice and in front of alice until the only road that was left was the road just beneath her feet. Theres no looking back.

If you are anything like me on this journey, sometimes when I try to reflect back I cant. I can remember silly facts but I don’t remember the details. I don’t remember the emotions of potty training him. I mean i do vaguely but could I adequately place it into words. Probably not. This is a day by day process. There is no room for tomorrow or yesterday when your mind is so full, your emotions are running rampant and you must remain even keel to be good for anyone. Care giving is exhausting. Is it rewarding? Sometimes yes, but then there are parts of the process that are down right painful. There are days I feel forgotten. Days I feel left behind. But then there are days I feel like I am part of something bigger than myself. Days when the road less traveled by is so incredibly amazing. I suppose that’s what is life is all about. Finding the light. that cliche saying ‘the darker the night the brighter the day” is proven true every day my eyes open and that familiar Charmin toilet paper commercial tune fills my room. Its this very fact of light that I am able to cry and smile in the same moment. Its the Hope I have that someday this is all going to be okay somehow even if today, in this moment, it feels so far from okay. Sometimes all it takes is one phone call. One coffee. one soft smile to remind me that I’m not forgotten even when, deep in my soul, it seems I am.