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.

ABA, ABA and a Loss of Words

” If you need me just throw something at me. Ill be in the other room with my headphones on” I said to the tech as she chose her programs in her ABA data program.

I have circled this computer about twenty times since Monday unable to find a second to open the screen. Wednesday, I ran through the drive through of my favorite coffee hang out before work thinking “its just a drive through and I need my coffee fix” I talked to the owner that I love so much and havn’t really looked at for more than five minutes it seems since school let out in June and as she hung out the window to catch up Aiden started pinching my other sons arm and the screaming and chaos commenced as I tried to play referee from the front seat “I better go see you later’ I said noting that soft smile on her face as I put the car back into drive. That’s why I love her, She gets it and still loves me in all my chaos. I hope one day I can be as organized and solid as she is… I wonder if she knows how much I really look up to her?

Like now, this paragraph, is being written in place of over 1500 words that i wrote, hated, deleted and yet I’m still lost on what to say. I could just give up and write nothing but then again I’ve done that for the last two weeks. Sigh, Is this a result of summertime motherhood? exhaustion maybe? or am i really  at a loss for words? Blunted? In emotional shock maybe? Who knows.

My wordpress account expires in five days, to renew or not to renew is the question… Is it worth renewing when the traffic is so low? Am I ultimately writing for myself? If so, Word on windows would do without the eighteen dollars I really don’t have for the yearly subscription. I just can’t get the traffic I had hoped to attract and as of late the desire to write is there but the words are not.

Anway, a t-Shirt was just thrown at me from the greatest tech in the world. I suppose its time for that ever dreaded haircut and the shower program we have been running for about 5 months. Deep breaths Sue. In and out. In and out. If all else fails I keep telling myself 5 more weeks til school starts again. Maybe then, life will slow for just long enough for my mind to calm and the words to flow once again. Until then ABA calls. I hope all of you are having a great summer!




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?


The Trip I Took

“I never look like that on Monday’s ” I said to the owner of the bar sitting to my right who had been keeping me compay for the better part of the hour as I watched two women sit down at the bar wearing tight dresses, perfectly straightened hair and smudge less makeup. He laughed it off as I picked up my beer and took a long drink while I admired their perfection.

I took a deep breath and sunk in my chair as my friend was pulled away by bar ownership and looked up at the tv through my eight year old walmart glasses with scratched lenses and hair in a messy bun in desperate need of washing. As I pretended to watch the baseball game on the TV I reflected on the trip I had just taken and the various things I had seen.

I thought about what life was like without autism for that twelve days and let me tell you what I saw. For starters I flew in an airplane for the first time in 20 years and let me tell you that was the most amazing experience. Just sitting in the airport was amazing. I was able to watch people come and go and I would watch them and try to guess where they were going, if there were traveling for work and for pleasure. I got to walk on the moving floor meant to keep foot traffic moving more quickly and I had way too much fun doing that. I sat in awe as I looked out the window on the airplane at the most amazing view of the sky above the clouds and wondered how anyone could sleep with such an amazing view available to them. As the flight attendants would ask if I wanted something to drink I always declined not sure if it cost money for a sprite and was too embarrassed to ask.


The Gentleman next to me on the first flight was on his way to Cabo and seemed the type to party in ways I could not keep up with and he seemed to be a bit fluffed up being placed between two women and just kept talking to us about his travel expeditions we just smiled and nodded as we rolled our eyes to one another as he continued talking. Upon our landing we were left to figure out how to get to our hotel and this is where things got exciting… I got to ride in an Uber for the first time ever which I thought was pretty neat. Our driver was a sprightly Russian, three times divorced and had just moved to myrtle beach from new york, he was a questionable character with some sort of body odor but I still enjoyed his company despite his story that left more questions than answers. As I looked out the window at my new surroundings I quickly took note of the touristy feeling.

As we got acclimated I took a deep breath of the ocean air remembering that I  had not seen the ocean in twenty years. Loving that our hotel room had a beach view and stood on the second story balcony I just watched. I watched the people walking back and forth noting the darkeness level of their skin and taking a guess that the more white the skin the less time that patron had been on vacation quickly noting my almost ghost like hue.

In all honesty we really didn’t do much on our trip but me, I had fun finding locals and talking to them. We stopped in at a local Mexican restaurant our first night, enticed by their happy hour special offering $3.50 margaratias, and as we sipped our mostly alcohol margaritas and got more and more tipsy I struck up a conversation with an older gentleman named Steve who, when he found out we lived in Detroit, divulged that he had been dooped into buying a building on Gratiot Ave. (which is a pretty rough part of town) and was in the process of selling it. He was interesting enough but had that familiar old alocholic air to him that I have grown to know so well. I asked him what the locals do around there for fun and he said “you are looking at it” as he opened his arms to the bar while his two friends looked on and smiled at his reply. I just laughed and settled right in as my husband ordered another margarita before happy hour ended.

We walked up and down the main walk near the beach multiple times and I have to say I was not all that impressed. I did note however that the Palm trees were strategically placed and were not in anyway a part of the over all untouched forestry. I would later ask this question of yet another uber driver and would learn that its not actually Palm tress that reside in this area they are a derivative of the palm tree and are called Palmetto trees. “Do they actually grow here because all of the them seem strategically placed” I asked. The driver just laughed and said “No we ship them in and plant them, our soil isn’t great at supporting them”.  “but they are on the your state license plates.” I said thoughtfully, “they are our state tree” “but they don’t grow here” I said as he sighed and fell silent and I ran out of questions.

The coolest part of the trip was by far the people. I would talk to people wherever we went because I could. I had time. I learned so much. I walked the beach picking up shells to save for later fearful of walking into the ocean because “there are crabs in there…have you seen the way they walk?!” Finally the last day my husband coaxed me off my white towel and made me get into the ocean. I held his arm almost shaking and inched my way in quickly noting the intensity of the waves. At first I hated it, and said “The first time something unknown touches my leg I’m out”. But ya know, once i was in and almost died from the first strong wave that came my way knocking me off my feet and taking me under I was good. I loved feeling the power of the ocean and got excited as I would stand in front of a big wave just beginning to crest at the top ready to battle its power. I almost died about four times… It was awesome! At one point there was a man and his son playing with the waves just to our left and as I wondered how his white sunglasses never fell of his head i heard him say in that heart stopping southern accent “A fish just jumped right next to Y’all!” as he giggled and prepped for the next wave. Long story short the ocean is awesome and I never saw a crab the entire trip.

One of the funnier moments was when we went to a museum of all things odd. Some of the things we saw were a goat with two heads, a lifesize replica of the tallest man that ever lived, and my all time favorite the tongue mirror. Just to set the stage there was a small tv screen placed over a mirror that showed some tricks people could do with their tounges which at the time people don’t know that the mirror is really a one way mirror and later in the museum trip you will get to stand behind it and watch unsuspecting people practice their tounge flipping skills. Well, I personally could have sat there all day but there was this one woman in particular that left me dying laughing. I stood there with david chuckling at people until this woman walked up with two men. As the men grew bored of the tounge antics and walked away the woman waited until she was sure they were not looking and drew near to the mirror grabbed both of her breasts and began adjusting them and admiring them in the mirror. At this I looked over at my husband and bust out laughing and he looked on in shock. I wanted to stand there and wait for her to realize the reality that this mirror was not in fact a mirror but I was pulled away by conscience.

On the flight back to nashville we had a lay over in Charlotte North Carolina so I sat reading an educational book about Sociopaths and the pathology of their illness (probably not the best pick for airport reading) until this older woman sat next to me with her little dog. Well, You know me, The dogs name was Tiffany (which I thought was odd but liked it), and she was from Califonia. She was a talkative lady and made me Feel instantly content. We talked like we were great old friends and later a boy from Texas across the isle joined in the conversation. We laughed and got puppy kisses as we waited and I learned that an animal that lays with their legs straight out actually has a name  and that name is “Sploot” of course it was the guy from Texas that had this important piece of life changing information.

As we boarded the plane home I couldn’t help but feel like I was leaving me behind once again. I know everyone feels that to an extent at the end of a vacation but me, this time, I knew I was going back to a house that I wouldn’t be able to leave. I was going back to meltdowns in random places, therapists in my house and the uncertainty of it all. The blinders would be back on and any chance at human interaction would be limited to “hi” and “bye” and “im listening to you” sentiments as I avoid eye contact as I watch my son so he doesn’t run away or eat something he shouldn’t. I slumped I’m my chair still clutching my book in my hands with only ten more left to read that would have been done had I not talked to those amazing people in the airport and regretted nothing. I looked around and took it all in. The smell of the plane, the impatient woman behind me, the black gentleman to the left of me asking for jack and coke before we even took off. I tried to guess how many different places the other travelers were from an where they were going. After all, our lives would cross only for the duration of the flight and we would forever part. Just like me. I would be me for only the duration of the flight and then its back to reality. Everything to everyone but myself. This trip was a real eye opener. It was incredible. It was a great breath of fresh air and reminded me that there is so much more world around me than the 4 square miles I tread.



Long Story Short- Keep Looking Up Kiddo

“Mom! Abby is on the roof!” my daughter yelled from her room as I groggily ran to her room I moved the screen from my daughers second story window and leaned out over the porch roof only to see my precious cat scurrying to the other end of the house. “Go get the cat treats baby we will lure here to the window”. I stood at the window feeling the slight cool breeze of the night and closed my eyes finding the calm as I listened to her claws grasping the shingles as she ran with out a care.

Sabrina arrived anxiously handing me the cat treats fearful of what might happen to our precious kitty but me, This was nothing compared to the time last year when I found Aiden (my son with autism) sitting on the same porch awning… This was just a cat… I was more than prepared to let her stay a night out there if need be. Cats always find a way to survive. I held out a treat and Abby came running and as she sniffed the treat ready to eat and run I grabbed her by the nape of her neck and brought her in the window saving the day for my 6 year daughter. I set this precious ball of fur down and handed her three treats out of compassion for taking her from her expected treat on the roof, closed the window and couldnt help but think “hmm, mom is right, Aiden is just like a cat”. I walked back to my room still battling a headache, layed down and that was the end of me.

Its been a crazy few weeks. Things i prefer not to mention but lets just say Its been an emotional one. Its been a test of character, resiliance and emotional regulation. Today after work as i stood in my kitchen folding the last of the piles of laundry amazing grace came on the radio and a sense of comfort washed over me and i immediately stopped what i was doing climbed up on the counter and softly sang to it, shocked that i still remembered every word despite the fact i had not sang it in so long. I decided to sit back and just reflect.

I realized that I hadn’t felt a sense of peace in so long but in that moment I looked around remembering my Manifesto i had written back in December and realized that I had attained more than half of what I had set out to do. Aiden is back to being fully potty trained, my job is up and running and i have, for the most part, made peace with leaving the psych unit. My book is just about written and, if I’m honest, the only thing keeping me from publishing at this point is fear and start up costs… but mostly fear. I don’t want to screw it up because I want it so badly.

Yesterday, my husband walked in from work to find me sitting in the living room crying. “oh no whats wrong” he said almost exasperated. “Nothing” I said. “no come on tell me its something, what now?” and it all came spilling out.

“A new tech started today, a man, and within the first few moments of his being here he saw the messy rooms and the iPad was dead, I had to explain our sons strange obsession with Charmin brand toilet paper and why there are three packs of unopened toilet paper in therapy. I just want normal sometimes. I just want to be normal. It’s embarasing to talk about toilet paper with a stranger. You just don’t know. I try to be funny, I smile and I laughed with him and the other tech but its all just too much when things get quiet.”

“oh is that all? Work was rough the contractor was giving me a hard time…” he replied as he continued on talking about things at work. He has no clue. How cold he. He isnt there for the therapies. Thats on me. I cant fault him. I pulled myself together and let him vent as I pushed it all down once again. I can’t get angry, hes built differently than me…

Internally, I keep telling myself to think positive. I keep reminding myself to hold every thought captive. When I think about autism being hard I counter that with “but he is back to potty trained, you aren’t cleaning up poop and pee like last summer as you refused to put a diaper on him. That battle is won. He hasn’t run away yet. He is laughing more this summer. He is doing so much better… you are already two weeks down. You are doing it momma”.

I am trying to win this new bout with depression. It happens every summer. About two weeks before school gets out I strike out each day counting down to “elopement season”. I count down the days that hold within them even just a few hours of “kid free me time” as the sleepless nights increase. Even now, its eleven thirty and I’m sitting here with my laptop and bluetooth headphones hearing him snore beside me as I drink a coca cola hoping my adrenaline will come down soon. With severe autism always at my forefront even at work my nights have been ending later and later as i wait for the “come down” from all the anxiety and worry.

I have been trying to find even the smallest things to divert my attention from the quiet and lack of real interaction. I have set up a fishtank, made a concerted effort to paper journal just a bit more often and just today I began to feel that push to read a good book to take me away from the world for a little while. I let someone hug me this week (anyone who knows me knows I am not a fan of that) and couldn’t help but feel like a big weight was lifted, I really should do that more often. I hate hugs because I’m always on the verge of an emotional breakdown and there;s nothing more apt to open the floodgates than a good hug so most of the time I just avoid them. I hate crying in front of people. Hockey players don’t cry ;).

I got off work today and slipped over to my favorite coffee shop where I was so happy to see my friend, the owner, whom i had not seen since the start of summer and was able to stop and talk for just a few moments while I waited for the familiar barista who is home from college for the summer make my mocha caramel as we caught up and he told me the good news that he was offered a job already as a high school math teacher. I Looked at my friend, the owner, who always has a way of calming me with the sincerity of her conversation and for those few moments we connected and she asked how the summer was going so far and it felt so great to say, “I miss you a lot but Aiden is actually doing great so far”. It felt so good to have someone that genuinely cares. who knows my struggles. Someone who has opened her business and allowed us to contrive situations to teach him to order his donut holes, cup of whipped cream and ice water. She even is patient to let him pay. I miss writing there. Come on September.

Long story short, I got the Cat off the roof, My kid is potty trained, I got a hug, I got a coffee, aiden has not thrown anything out of our second story bed room window (he has a preoccupation with watching things fall) and I am two weeks into summer vacation without a kid getting stitches or running away so things are really looking up!

Slipped away

I dont know why i keep thinking about that day. That day you slipped away. I remember it so clearly as the doctor said the word “Severe”. I remember leaning forward as my mom sat back and gasped in that that small dark room. Everyone waiting expectantly for me to cry but I didn’t. I pressed in as my heart raced “so where do we go from here?” was all I could say. In some strange way you were never you after that even though all that had changed was a word for all we had been apperceiving.

I remember driving home from the place that used to give me so much freedom and leaving it right there in that doctors office on liberty street. The ride home was silent as I held my hand out the window and let the wind calm me. It was sunny. Not a word was spoken between us as you stared out the window watching the clouds pass as you always did. But this time something was different. It wasn’t just you that was lost. It was all of us.

Now,  I knew you were gone. Lost in a place that I could not bring you back. I had no clue how different life would be. Nothing looked the same. It was like parents entering a hospital to have their first child and walking out parents with a whole new purpose only this purpose would be one of survival. It would test every tenacious belief I had ever held about about the world. Excitement would be replaced with fear. Wonder would be replaced by isolation. Dreams would be replaced with denials. Sports would be replaced with therapies. Date nights with my husband would be replaced with nights sitting at a restaurant filled with despondency.

The day you slipped away and your words faded into silence was the day that my whole world changed. IT was the day that I began throwing away your baby pictures because I couldn’t look at the present in your eyes. Now, I look at you and see empty. nothing is the same. Its like you were stolen. Like our lives were stolen.

You used to run and play and answer when I called your name. You used to call me mommy and say “ight” for light. You used to like the light, but now we eat in darkness because it hurts your eyes. People tell me to accept the life I have to find happiness and I just cant. You were stolen from me. And I don’t know how to find you. No therapy can replace what was taken.

I have one video of you playing, talking and laughing at a dump truck toy. Its the only one I have left. I can’t bare to let it go because it reminds me of a better time. When you were just a boy and I was just your mom.

I remember this one time looking in a mirror and you smiling at yourself as I giggled in the background. You heard a firetruck on the tv and you pointed to it and said “firetruck”. Today a firetruck went down the street with its siren on and you didn’t blink. It didn’t exist in your world and I just stood in your doorway empty and walked away.

I keep asking “why?” “Why us? Why you?” they tell me to stop asking… it does no good. It wont bring you back that those are answers only for God but dont we all wonder why this and why that? Isn’t that what leads us to faith? “why are we here?” read the bible. “Why is that rainbow in the sky?” its all existential in nature so why is my question so abhorrent to so many? Is it because I am expected to just accept it?

“I don’t know how you do it?” they say, “I don’t want to do it… I have to. I don’t want to watch my child struggle through a day at school but I have to. I don’t want to sit on the sidelines spending all my money on therapies as I wish I could be spending that time and money on sports?… I don’t want to watch him get farther and farther behind… but that’s my reality… There is no chance of extradition from any of it. That is my reality”

I needed milk today. Simple a thing I guess. But I sat at the foot of my bed in a state of consternation knowing you would assuredly end up at the end of an aisle in a fit if i were to take you to the market. Your 11 year old body flailing as my heart would pound and my face would grow red. I pictured it in my head and decided to warm up pancakes instead.

Quarentine has become our present state. Protecting the world from our realities. You aren’t the cute autism our society has grown to enjoy in all its humor. People look at you in fear as your arms flap and you scream out but not me. I don’t fear it. I fear them. You are my normal. My entire life has been anomalous since that first day you slipped away now, its the normal I fear. I suppose you brought me to a place where its the normal thats scary because there is no longer a place for us there. I sit in silence in the stands silenced by the light conversation.

I can no longer reach the world where a won game is reason for lost sleep. I no longer care about who said what about whom… Thats lost on me. I try so hard at normal and remain sitting in silence staring at the clock. I have reached the place in life where what others think is huge seems so minuscule to me and I find myself tilting my head to the side wishing I could hand them my soul for just one moment so they could feel how light the trial they face in the scheme of life. I don’t mean this in any derrogatory way. I wish it only to make others lives seem lighter. Its that adage if you only knew how hard it really can be for some people. I am sure there are others that look at me the same.

You don’t talk the same. You, don’t laugh the same. You don’t love the same. You, slipped away. But then, you do talk.. scripted, calculated, apraxic, slurred all while compulsively repeating the same lines from obscure clinique commercials. I smile and repeat your catch phrase for some sort of connection. you smile, flapping your arms and run away satisified and me, I sit, empty missing You.

The day you slipped away, I knew it would never be the same and it hasn’t been since.


Highways and Hospitalsb


Today as I drove home from dropping sabrina off at school I looked on at the short two exit stretch of highway I daily and couldnt help but feel trapped. An elementry school on one side and a truck stop on the other filled with tired truckers and moms meeting for brunch trying to find a connection. I couldnt help but for a moment drift off and wonder what it would be like if I could just keep driving. This one small stretch of highway I travel if only i could just break past the barriers of responsibility and pain to once again travel and see what lies out there.
I feel stuck in a prison and the walls just keep closing in. As I yearn to break out the autism pushes me back in. As I close my eyes to escape for even just a moment when I think the silence is safe the knife of his screams break through like first thunder in a light rain in spring. One moment calm, crisp and nourishing before the thunder begins to strike and the storm sets in and the wind begins to blow in four different directions.
I wonder what it would be like to sit atop those Montana mountains once again. Would it feel the same? As the sun sets would I still look on in wonder? Would I still see the beauty or would I see something else? Would I feel the same peace knowing the world as I do now?
His smile is a loaded smile. It took us four months to teach him to smile. Now as I hold up the camera and say “smile” he complies but is it real? Forced as it is I wonder if that smile is the same mask that I wear every moment of every day. Maybe he and I are more alike than different. Maybe his behaviors exemplify every emotion that I carry within me. Maybe he is really my soul set out in the world for everyone to see. Every meltdown and every tear. He is the emotion and the passion without the restraint of social restriction.
His very being is what has taught me everything that I know about love, loss, persistance, unlimited forgiveness, unadulaterated reality and truth. It is through him that I have found many of our societal truths. It is through him and his disability that I have had to conquer the soft parts of myself and press on despite the discomfort of stepping over my line of safety. It is through the ebb and flow of daily life with his unpredictability that I have learned to adapt to just about anything without blinking. He has been the center of everything despite the exhaustion I feel.
There are days I wish I could run. There are nights I lay in bed and wonder about the world out there. What would have been had the reality of his illness had not hit him. Would I be in California writing books? would my car be the mustang saline I had dreampt of since long before his existance in my world? Would I be a big shot psychologist as I had dreamed? But then somewhere In the streams of what ifs I find myself at a wall and the questions change shape. What would I write about had he not entered my world? What is a mustang if he is not in it? What is being a psychologist compared to what I have now? I have the opportunity to connect beyond the confines of ethical relational guidelines. Having him has freed me from the professional boundaries and allowed me to experience autism on a whole new level beyond the clinical constraints. It is because of this that I can look on at mental illness and see the person beyond it, I can see the families and the hours and the love surrounding every turn of uncertainty. I can see the patients sitting there with no visitors and see both ends of exhaustion. I can see the struggle of the patient who doesn’t understand what they did so wrong to end up alone and I can see the caregiver in my mind sitting in their chair or at home or maybe in their car in the parking lot staring up at the windows of the large cold building with tears in their eyes wondering the same “what did I miss what did I do so wrong”.
The two meet and friction ensues. Fists on tables, chairs thrown and doors slammed. Shots, Seclusion, sleep. but no resolution to an argument with the same feelings of loss on both sides never visited, never explored a relationship remaining broken when what broke it was really one or the other being unwilling to take a step back and see that what is tearing them apart are sometimes not their differences but their similarities.
I wish this world was different. I wish when we met someone we would immediately look in their eyes shake their hand and say, “how the heck are ya” and truly want to know the answer. I wish we could look past the idiocyncries of one another and realize that we all are just a bit quirky. This world would be a much better place if we could stop placing ourselves in a bubble and reach out to one another even when its tough or when it seems hopeless. Because what Aiden has taught me is that anger isn’t always anger. Anger is often the result of hurt. Its the result of trying to hide from something that scares us and once we face that fear we begin to see the anger fade. There is nothing left to fight and the adrenaline subsides.
I watch aiden struggle everyday and I struggle with him. I watch him work. I watch him hide in his iPad videos for any semblance of what he considers safe. and I get it. Its like when i walk in the door after work and i have been surrounded by dysfunction and unpredictability all day and everything is calm. I lock the door behind me and stand in the dimly lit kitchen and get my wits about me before heading up stairs to kiss my children. This is my favorite time of day. As i watch him dream and sleep so peacefully and the disorder isn’t evident. For just that short six hours at night when he sleeps the world is okay again. I don’t have to worry about the thoughts that may attack him, the uncertainty in his eyes or the obsessions that he just cant conquer. For that six hours a night i watch him sleep sound with peace on his face and dreams in his heart. and the world is okay again.
It is aiden that has kept me here. It is aiden that has taught me how to live among people, not over them. It is Aiden that has taught me that who we are is not what our job is or what we drive. Aiden has taught me that your emotions are not what should drive you however strong they may be. Aiden has taught me not about the quantity of your social circle but the content of the relationships. He has taught me that one hug is worth more than all the words in the in the world and that A journey around the world can be far less meaningful than the journey you take whilst never leaving your living room