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.

 

The Undesired Road Often Leads Home

In about two hours I will walk into a new job working with children on the autism spectrum and I cant help but think back to the happenstances that have led to this very moment. I am about to do a job that I said that I “would never do”.  “I don’t like kids… I could never work with kids… they bug me…”. Yes, I admit almost sheepishly that those were the very words that came out of my mouth.

In college is where my passion for psychology was realized. Now, with that being said, my most hated classes to take were behavioral modification and child psychology. It always bothered me as I sat there at the young age of 18 learning about phases of development as the older students in the class raised their hands to share stories of their children. I remember feeling highly annoyed and just wanting to get through the material so I could get a longer break between classes so I could have a bit more time to prepare for my abnormal psychology class that followed this one. I knew child psychology was never going to be in my future.

Behavioral modification was a bore. I squeaked by with a B+ and breathed a sigh of relief when it was over. The whole operant conditioning and Skinner and Pavlov was interesting enough but the implementation of techniques didn’t quite catch my fancy. I wanted the schizophrenia, the bipolar, the identity disorders I wanted the obscure. The more disordered the better in my suburban sheltered adolescent mind.

In high school I was often paired with special education kids which I now know was part of a peer to peer program and I loved every moment of that. I always struggled in school due to issues with ADHD and because of my attention limitations my self esteem had virtually collapsed in on its self despite my intelligence. My grades were low and so after so long I just gave up. But one year in science class, i believe it was my sophomore year, my biology teacher took a chance on me and paired me with a boy and said, “sue N___ needs your help this year are you willing to help him? I think you would be of great help to him”. Ecstatic at this request as no one had ever asked me to help anyone else due to my deficits I diligently learned the material and listened harder in class and focused on helping N___”. I remember telling my mom excitedly how I was helping this boy and how amazing he was not even realizing that I was getting all As on my tests. and looking back after all my time in the helping professions and after watching my sons progress i realize that he was actually helping me more than I was helping him.

During my senior year in high school my grades were so terrible I had to be taken out of school and a tutor came to me. Yeah, seriously. and it was about this time that I began reading a seriese by the author Torey Hayden. She wrote books based on the special needs students she worked with and described many different situations and ways she would help these students. I found them riviting. Yet still told myself I would never work with kids. It was just too tame.

Fast forward to 2010 and my eighteen month old son is diagnosed with a severe form of autism and i was thrown into a world of PECS cars, picture schedules, therapists, sign language and early intervention programs. I was surrounded by developmental milestone charts (that i would eventually burn in a neighbors bonfire)  and wooden building blocks. I was lost and wished I had paid more attention in child development class. Wished I had listened more to the moms as they spoke of their children instead of just doodling small poems in my notebook about my then boyfriend to get through class.

I was lost. I didn’t know any educational songs. I didn’t know how to do anything. I stood there staring at his early on psychologist wishing she would never leave because her being there made me feel so secure. But as with anything I adapted. I learned. I grew and I dove in head first.

In 9 short years, I have learned all I can about autism and those with children just diagnosed often come to me for guidance. I have published in autism parenting magazine and in a few short hours I will be starting my first day working with children on the spectrum.

It’s funny sometimes where life takes us as we make other plans in our head.  I walked away from my inpatient job and am going to do the very job that I said I would never do and I couldn’t feel more excited or blessed. Looking back its crazy to see just how far back the road to this very moment extends. I cant wait to make a difference and hopefully be that therapist for that child and their families that I needed when I was just starting out. Lord knows I had some of the best examples at the start of my journey. Most of which I still keep in contact with.

This is a great example of not letting life hold you down. Sometimes, when you feel stuck all it takes is one step out of your comfort zone, one look around, a deep breath and “20 seconds of courage” (thanks mom) to make your life meaningful again.

Cheers to all of you. and “just keep swimming” right Jenny? 🙂

 

Autism and the Holidays

Tonight as we walked in the door I tried to pull up his pants so no one would see the pull up he was wearing. I had spent the better part of the day cutting his hair (which is no easy feat) and cooking the cheese potatoes as I alternated between the basement to make sure he was still clean and the oven to make sure the potatoes were not over cooking. I put on my jeans, my stylish boots and straightened my hair. We loaded up our three children and our contributions to the meal and hit the road to our families house. Inside, I tried to talk myself out of thinking through all of the possible outcomes of this meal.  I noted that we had left all technology at home and this would be a technology free experience. I thought what if he has a messy accident while we are there and I have to change him? What if he steals food off everyones plates as he always does? What if he turns off the football repeatedly? what if _______??????…..

I walked in and as everyone said their hellos and hugged my eyes were scouring the place for anything that might hinder our success. I took note of the table and the number of chairs that circled it. I began counting the number of people in attendance noting immediately that this table was going to be tight and that was going to be an issue. As the food began to be set on the table I knew right off that ham on the table was not going to survive until dinner was to be served. I did everything I could as he circled the table. It eventually came down to me sitting in the doorway of the kitchen and living room to keep him away from the half set table until I gave up. I walked into the kitchen and opened the ham and starting cutting off pieces for him as the rest of the women worked in the kitchen to finish preparing the meal. I hoped I could feed him before the table was filled wtih all the food and the guests.  That would be my only hope for any real connection with the adults in the room.

Finally, as dinner was finished being set we all sat down aiden to my right and sabrina (my 5 year old) to his left). It started almost immediately, he began stealing the ham off her plate, then mine, then he was trying to get up, he kept trying to pick the oranges out of the fruit Jello mixture before him. I noted one of the guests getting increasingly upset out of the corner of my eye but I was doing everything i could. FInally i started sending all of his favorite foods down the table after filling his bowl with all of the things i knew he would go after. At this point I was standing, doing anything I could to keep him at the table with us while protecting the rest of the food. I could feel the anxiety setting in as i continued blocking his hand and saying, “No Aiden, eat off your plate” as he reached to my plate and stole more ham from my yet untouched plate even though he still had a helping on his plate but I didn’t care this was hard for him and I wanted to help him through it. Again, he reached over to grab another orange and that’s when it happened, another guest at the table slapped his hand away (not hard but still) and that’s when it happened. I saw Aiden sink in his chair as he began to slap his hand. I could see the hurt look in his eye. I felt the anger building up in me. I wanted so badly to say something but I just leaned to Aiden and placed my forehead on his and said, “You are a good boy, I know this is hard for you. You are doing a great job. Don’t hit yourself” and kissed him.

After a few moments I saw his face gradually lighten and he went back to himself. I just sat silenced just picking at my plate. My soul was so downcast within me. I kept begging in my mind, “cant you see that this is hard for him? Cant you see that he is trying to fit in here? Can’t you see that he doesn’t understand? Can’t you bend for him just as much as he is bending for you? Can’t you just show love?” My heart was bursting. Finally, after having enough dinner to satisfy his hunger Aiden got up from the table and said, “couch”. “You can go to the couch baby go ahead”. Aiden got up and entered the living room where the tv was playing and I felt the anxiety begin to pass as I began  to join the conversation around me until I saw it out of the corner of my eye. Another guest was growing increasingly annoyed that Aiden was changing the channel on the Television as he always does. Me personally, I didn’t even realize that the television was even on. I couldn’t see it from my angle and from what I was experiencing everyone was engaged in conversation until, that is, I heard “AIDEN, STOP CHANGING THE CHANNEL ON THE TV!!” I just looked at my husband and he looked at me as the host of the party said, “you shouldn’t even be watching tv anyway when you are at the table”. At this the guest went silent and that’s when I gave up. Still hungry I walked away from my plate and went in with Aiden and cuddled with him on the couch.

After dinner and conversation ended everyone began to filter into the living room where aiden and I had been sitting and I would just interject here and there as I cuddled my son often reaffirming that he, “is a good boy” and that he was “doing a great job”.

We arrived home and as he disappeared into the basement to play on our PS4 I sat in the living room with my other two children feeling sad. I felt sad for Aiden, I thought about how hard he works everyday and still its not enough. I kept seeing that look on his face and him hitting himself and wondered if that guest even noticed what his reaction caused? Was he even aware of the pain both Aiden and I had to push through to get through the rest of the meal? Was the football game really more important than helping a boy through a day? Did anyone see how hard I was working to maintain his behavior for their comfort not ours?

My friends we need to do better. We need to see past ourselves and understand that our children with challenges are doing the best that they can. There is so much more going on than what is seen on the outside. If you find yourself getting annoyed, just stop and ask yourself how their parents are feeling. Just stop and know that we are all doing the best that we can. Just stop and know that this child is struggling. This child doesn’t understand. They need your grace. They need your kindness. Please remember that your momentary discomfort is our everyday. Please know that your impulsive reactions are affecting our children in ways that you may not even know. Please help us just by being kind and if you can’t be kind please just ignore us but don’t react in anger or frustration. Please know We are doing the best that we can and know that just getting him to the table was a huge step that took hours and hours of therapy. If he touches your food and you dont like it, give him the food and build another plate. no harm done. no broken hearts.  No hitting himself. No look of defeat on his face that I have to relive as it sticks in my brain longer than you know.

Marriage and Autism: Finding Love in the Chaos

I watched a movie about a year ago called Jack of the Red of Hearts and there was one scene in the movie that hit me so hard that I find appropriate to open this blog post with. In the scene there was a husband and a wife having a heated discussion about how to proceed with their autistic child’s care and the husband said something so profound that resonated with me and often runs through my mind whenever there is an, “autism disagreement” between my husband and I and here is what he said, “I don’t want to feel like we are co workers in a mental institution anymore”.

I don’t know if its because of working in the capacity that i have as an inpatient mental health technician for the past thirteen years or because sometimes it really does feel that way but this line hit me so hard that I had to pause the movie and walk away to collect myself because well, he was right. It does feel that way and not just sometimes, most of the time, And there is always this tug and pull between “he doesn’t get it” and the “why is she acting so crazy” conversations we all have had with our closest friends (come on guys you know you have had the conversation). and the expressions that i have heard in almost every conversation is generally something like this, “he is never home so he doesn’t know whats going on and he still tries to tell me what to do. he just doesn’t get it.” and on the other hand her male counterpart is thinking, “I have to work all of these hours just to keep the therapies going and i come home to a messy house and chaos! And whenever I try to help she gets upset at me and gets all crazy. I mean really what does she do all day?”

Ok Y’all, I want to lay this out on the table here.  First, lets tackle the emotions in all of this, because ladies and gents, this is what motivates us to do whatever we do. Ladies first lets get this out…

Dear Husbands, we are tired, we are physically watching our children suffer, because we are home, the brunt of the housework is on us as our children continue to break things and for many of us pee on things. It is our primary responsibility to keep our children safe and to know what they are doing at every moment. We are running our kids back and forth to therapies that may be helping but then again they may not be and we are left to gauge that. During ABA there are strangers in our home during our most intimate moments with our children. As we eat with our children without you a therapist is helping to script our conversations and sits not eating as we eat in front of them. when our children misbehave they are watching how we react and when we lose our patience (as all parents do from time to time) they are standing there judging. We are not allowed break down time and when you get home, I seem distant because I’m done with people. I just want to put my sweat pants on and watch Shameless or some stupid ADULT show because my day has been filled with stress and emotions I had to suppress. I know you get upset when I go out for coffee with a friend, you may think that I have it made, or that I am “taking advantage of not working” but really, that coffee break is usually spent talking to another autism mom. That short coffee break is my saving grace, my one breath of air in my ever sinking afternoon.

Now, of course I am not male but ladies I have listened and I have thought long and hard and if I had to compose a letter to Us wives from our husbands this is how I imagine it would go…

Dear wife, I am tired. I get up every morning and head off to a job that I’m not so particulary fond of when I would much rather be home. When I am at work I am always thinking about home and wonder what is going on. I get jealous of you when you go out for coffee with a friend because I don’t get any time to go out with my friends because after being out at work for so many hours a week I feel guilty for leaving you alone again even if I don’t say it. It seems like with every bill I pay two more come in the mail and I cant seem to get us ahead financially and that makes me frustrated. When i get home to a messy house and a stressed out wife I get even more frustrated because I have tried to “fix” this and I realized that “fixing” this is not really an option. and lastly whenever I try to intervene with a behavior or to help you with something pertaining to our child’s care you tell me that, “I don’t know what I’m doing because i was not here with therapy all day so I don’t know how to do it right” and that talk makes me feel angry and like an outcast. and Last but not least, I want my wife back. Ever since autism hit you seem so distant and our times of intimacy has turned into a chore leaving me feeling like I have no place in our home beyond keeping a roof over everyone’s head. you always seem so preoccupied.

There are so many dynamics in a marriage when Autism is thrown into the mix and i think in the course of all the emotions and lost personal time there is a loss of connection. I think its important that we take note and be more forgiving of one another. Men Please note, that if the house is in the same condition as you had left it she worked her butt off to keep it that way. And women, when your husband wants to stay in bed on a Saturday until noon, maybe we should let him without getting angry because darn it he has worked hard and is sifting through emotions we cant understand. (this does not mean husbands that when you get out of bed at noon on Saturday and look at your wife managing children with her messy hair and sweat pants that you have the right to get up and starting telling her what you don’t like about any given situation because she is maintaining for you to rest when you get up thank her and ask where you can help).

Date nights are VITAL even if you don’t leave your house. Put the kids to bed order take out and some wine and talk. Talk about anything BUT autism or the kids. Talk about trips you want to take, friends you have met how things are at work or how attractive you still find one another… anything, anything BUT AUTISM. Maybe take a moment to thank one another for the work you see them putting in or ask how you can both somehow take the pressure off of one another. Because its no secret that the divorce rate in Autism families is high. Like 80% high. My husband and I almost fit into that statistic two years ago as we sat in that Detroit courtroom holding hands unsure of how to fix it and we still aren’t perfect but what got us back on the right track was taking a step back and remembering what brought us together in the first place. Because despite all the changes that Autism has brought to our lives and to us as people we are on this road together and even though we often approach our sons care from different angles we have the same goals in mind and the same intense love for our child that no other person will ever have towards him.

Therefore, we must see that what our spouses are doing whether it be staying home to run to therapies or gong to work each day every clean dish and every paid bill is a major contribution to our child’s well being and success. We musn’t continue on in this thought pattern of negativity and battling one another. Accept one another, thank one another, encourage one another be gentle with one another and last but not least love one another. You are not co workers in a mental hospital. This is not just behavior and therapy management this is Love management. When you look at it from that perspective I promise you everything will change and the chaos may not physically diminish but your soul and your home will become a much calmer place.

Autism Parenting and Mental Health

Imagine this… you are standing in your kitchen and the television in the living room is playing Trolls for the one millionth time on high volume, your son is in the other living room laughing with his friends as they play fortnight on the ipad and they are yelling and laughing in excitement, your special needs son is in the basement and you can hear the therapist working with him as he yells out in frustration and you know he just bit himself again, dinner is cooking on the stove and your mind is going a million miles a minute trying to remember that one kid still has homework, the other needs a bath and oh yeah don’t forget the laundry in the washer again… Your husband (your only real adult interaction of the day) isn’t home beacuse he had to work late and you know when he gets home he will be understandably exhausted so he will come in, eat and that will be the last of him. You get dinner finished and the children wont sit and your special needs child wont eat what you made so you fly through your meal scarfing down what you can so you can go make something he will eat even though the meal you made was his favorite last week. after cleaning the kitchen and doing the homework and bathing the kids you sit down on the couch starting at the tv noting you aren’t even watching it, exhausted, knowing you will get up tomorrow to the same challenges. And this is a good day.

I want to talk about something that is almost so taboo that its hardly ever discussed. I want to talk about the mental health of those who caretake those on the autism spectrum and really if we are honest any special needs individual. I want to talk about the daily struggle in our minds as we navigate the care of our children and the battles in our minds. There is a constant worry that we carry that never really goes away. There is fear, there is anger, there are the questions “why?” the sleepless nights, the moments where we ask ourselves “am i doing the right thing” knowing we will never really get that answer, there is endless laundry (especially for the almost 20% of us who will never have potty trained kids or those of us fighting that battle and somewhat winning so the hope keeps the pull ups in the cabinet despite the mess), the broken furniture, the door locks, the window locks, the fridge locks, the neighbors that aren’t quite sure what to say so they just look out of the corner of their eye when he is outside, the loneliness, the isolation, the loss of self, the constant placing of yourself last out of love, the jealousy and last but not least that never ceasing feeling of loss and desperation. And when you put all of these things together its a recipe for disaster.

I find it troubling that those of us in the autism community don’t talk about this more. I mean, we are all battling it some more than others of course but its all valid. As I travel from Facebook site to Facebook site I cant help but Laugh at the memes that other autism parents have made with funny sayings, you know like the ones that make light of the difficult times. Sure, they are great, they are funny and I often share them on my facebook to make light of the situation but when you really sit back and think about it the things that we are laughing at are the things that are really breaking us. What if I told you that our jokes are really our methods of survival and our attempt at remaining valid to the rest of the world? Need an example of what I am talking about? Observe.

autismparent

Ok so yea, this is a picture that most parents would get even the ones with only typical children but what if i told you the precipiting behavior for this photo and its saying was what caused that parent to lose it earlier that afternoon? What if i told you that child had talked about nothing but that lego man for hours upon hours and the parent had spent most of of their week looking for it as their child screamed and melted down? Because honestly, that is the reality for most of us but we hide it. We hide the battle that got us to the point of this being funny.

There is a point of exhaustion that we, as special needs parents reach at various intervals and sometimes we are lucky enough to find someone at the same level as us and we connect for a while until we slip into different stages of emotion. But I think its time that we talked about all of this. Got this all out in the open and said, “Funny, not funny”. We need to stop saying we are okay when we aren’t. And most importantly the mental health system needs to step up and recognize that we CAN’T get help. We don’t have the time, economic resources or the availability. And for those of us that do seek out help we are so conditioned into the thinking that “they don’t get it, they don’t get me, my situation is so far fetched they wouldn’t believe me if I told them I found my son on the roof last night” that we either don’t share the realities or we are proven right in our assumptions.

I’m gonna be honest here and say from my experiences and interactions with other parents there is a high rate of substance abuse in the special needs community be it Alcohol, marijuana, sleeping medications and yes even pain medications you just don’t hear about it or see it because most of us don’t get opportunities to leave our house much and we cant get the mental health resources we need to deal with it effectively because lets face it, mental health professionals wont come to us and we can barely make it to the grocery store. (thank God for Grocery online ordering)

One could argue that with the advent of social media we have created a greater sense of community among those in the special community. Sure, there are autism support pages and the like however, It is rare for a parent to go on there and say, “I am struggling”. These pages are often filled with people asking for help in creating their child’s IEP or advice on how to fix a new behavior challenge but almost never do i see parents asking for help for themselves. Are we hiding behind the autism lingo or are we really that lost that we don’t realize we need help too? Are we trying to be super parents or are we just so conditioned to being told no when we ask for help that we think no one can help us?

This is something as a community we need to fix. we need to stop hiding the fact that we are sad, depressed, mad, can’t turn down that drink (that turns into a half bottle of wine) at 5 pm when everything is spinning around us, can’t sleep without that hit or cant relax without that vicodin that calms our physical nerves that are really caused by stress… and the mental health system needs to step in and say “this is a community we are failing and we need to do better. We need to create a platform that is both accessable and safe for these parents to get help”.

Caring for a special needs child is stressful, its hard, its isolating and it really needs to take a community effort to get them to be the best that they can be. But the community around us can’t help us if we keep hiding. I say, its time we started talking about it. Its time we approach our local autism supports and say “hey, by the way, there’s this thing and we need to talk about it”.

 

The Concurrency of Regression and Progression of Skills In Autism: Just give it time

I have never been good at this sort of thing. the basic ebb and flow of life. But ever since that day when i realized I had gradually lost my son to the darkness of autism my ability to adapt has declined. Every loss of a skill, however small, sends me into a state of panic. The past few months have had me in a constant state of panic as he began having urinary accidents that he did not have before. I would clean his clothes crying asking inside how far the regression would go this time. Is this going to be permanent or would there be some miracle that would take this plight away from us?

I began to obsess in my my mind. What changed? Was he upset about something? What did I do the first time to get him potty trained? and of course the never ending quesiton of What did I do wrong? What am I doing wrong? What am I missing? Is he sick?

One morning about a month ago the anxiety was so bad and the accidents just kept coming. Load after load of laundry. Clothing, bedding, two thrown out couches, a fight with our therapists about the issue and I didn’t know what else to do. Desperate for answers and physically shaking in fear and anxiety I called my friend and said, “that’s it, I’m taking him to ER can you ride with me? I don’t want to go to Detroit alone”. “Ill be right there” she said. As I waited for her to arrive at my home after taking her kids to school I packed up the “Autism to go” bag. I packed his portable dvd player. All his favorite dvds. all his paperwork, his headphones, doritos (in the blue bag) an Ipad, my Iphone and a charger for back up. I wanted answers. I needed answers. I was empty and out of interventions. Nothing in his immediate environment had changed, his schedule had not changed, his therapy had not changed and I was standing there empty with two less couches, therapists breathing down my neck and and another empty bottle of laundry detergent.

The doctors found nothing. Thankfully. But after a day in er with blood work, kidney ultrasounds and countless tests the young doctor gave us the good news with a smile on his face that “nothing is physically wrong here. My work here is done” I looked at him silent for a moment knowing I should be happy about that but my mind only raced more. “Well, this is where my work begins then” was the only way I knew to respond. Noting the look in his eye I could tell the look of concern in his face for me breaking that doctor code of coldness as he said, “Good luck to you” and pivoted out of the room and to the nursing desk to collect another chart.

Since going home that day I have tried everything. I took away technology. I kept the house quieter. I cut down on therapy (not wholly by choice but that’s been covered).  But the laundry just kept coming and every effort I had taken was in vain. I took him to the bathroom every 20 minutes for over three weeks. but he just kept backsliding and began to have accidents at school too. Three calls from the school to come and bring him more clothes and I had to break down and begin purchasing Pull ups once again fearing that he would get even more lazy but I had no choice.  And what has made this whole escapade even more anxiety provoking is that in every other part of his therapy and life skills he has been progressing forward so I found myself trying to decide what was more important and that’s tough when everything is so important to his development.

As I began to cycle from anxious to angry and every emotion in between I began to take a step back. My emotions were all over the board. Some days I would give up and let him into the media room to play with the ps4 and just clean him as I found him wet and others I would be 1:1 with him for 24 hours straight. Yeah, I know the inconsistency would drive any BCBA nuts but then, I am not his therapist, I am his mom and the emotions behind this was breaking me. Somedays I could separate to get the therapy done and other days I would stand there just starting blankly out the window as my coffee got cold still sitting in the Keurig.

I was confused as he would play with me in ways that he hadn’t before. He was finally seeking me out. My mom said that he had begun asking for me when she babysat. He began asking out of the blue  “I gana go play hockey… WES?!’ he was talking more and clearer and even learned the National anthem but despite all of this progression he was wetting himself over and over through the day and night. Afraid to change anything but afraid to keep things the same I stood stagnated. And that stagnation made me feel guilty, like I should be doing more but what was that more? I was in agony. Until, I decided there was nothing I could do beyond what I had already done. So, I left him to himself to figure this out on his own in hopes that time would fix the issue.

Three days, Four days, Five days passed and a new pack of pull ups later I sat there contented at the thought of leaving the fight for time to decide. Then, yesterday, no accidents. Then, last night as I got into my car for hockey i reminded my husband to put the pull up on Aiden before bed and closed the door for a small break with some friends and some hockey which has always been my hour escape for the week. Not thinking much of it i got home showered and went to bed. I awoke this morning to him stirring bright and early at six am and rolled over uttering “did you put a pull up on Aiden last night?” “oh, I forgot” David said. Frustrated I said “ugh, here we go another load of bedding and a wet kid”. I rolled out of bed and touched Aiden’s pants and wouldn’t you know… they were dry. I ran over to his bed… Dry… what?!

Its now three thirty pm and he has been accident free for more than 30 hours. I’m still holding my breath. I told my mom “this is the craziest action movie I have ever been privy to” as I sit cautiously optimistic. Has time really cured the issue? Maybe my fellow autism mommas were right that when a child with autism is about to progress they actually regress first. I’m still holding my breath that this saga is over but I am starting to see a light at the end of the tunnel. and not only are we exiting this nightmare of a regression with some new skills but I am walking away from this experience with a new perspective that sometimes not everything has to be a fight. Sometimes, I need to step back and let the process run its course. I need to let him figure things out on his own. Just like everyone else sometimes he needs to take a few steps back to grow five steps forward.

Why I Share the Hard Moments of Autism- The Inpatient Experience

“Sue, come with us please. _____ is asking for something and we don’t know what he’s asking for” she said interrupting morning report. Knowing who she was talking about I knew why she was asking me. A nonverbal autistic man, and I had the most experience, I knew basic sign and had brought in a PECS ( Picture exchange communication system) to help him earlier in his admission (that his group home workers didnt even know how to use and later would take it with them and not return it leaving him unable to communicate once again) and everyone was asking how it worked. I couldn’t help but feel fear as I thought about my three year nonverbal child at home.

I walked into the room to find him in four point restraints and security standing by as the nurse was in the medication room drawing up some sedative to help calm him. I said verbally and in basic baby sign (because I was not sure how much he knew noting he was older in age thus was raised in a time Long before autism had the treatments they have today) “Hi man, what do you want” (signing “you want what” as the exact translation in American Sign Language) he stopped and calmed just looking at me. I tried to think of the most basic of needs and immediately, noting he was of bigger stature said, “you want eat?” While using the sign for eat. At this question his eyes lit up and he said in that familiar autism tone “wa, wa, wa” as he vigorously shook his head.

I looked at security and the other technicians in the room and said “I’ll be right back” and dashed into the units kitchen to see what I could find. I warmed up some Mac and cheese as quickly as I could and juice and a spoon and re-entered the room where security was still standing by and the nurse had re-entered the room. I asked security to release one of his hands so he could eat and security complied still silent and nervous preparing for a possible battle. I understood, this guy was big and even I was mildly unsure about about how this was going to transpire but I also knew that autism is different than other disorders and a fight was unlikely now that his need had been met. He finished the first small plate of Mac and cheese and i said “more” as i signed and he said calmer this time “ya” as he continued eating the last few bites. I ran and got another plate and brought it in  I told security that he would be okay now and looked at the nurse still holding the shot in her hand and said, “he wont be needing that shot he just needed to eat”. But the nurse said, “I have to give it to him its already drawn up”. As she gave him the shot to “relax” him I couldn’t question it. I felt a tinge of anger boiling up inside me but then I knew nothing about nursing and meds I didn’t know how all of that worked and I was not going to confront the decision in a patient room (and would never end up doing it all). I stood there while everyone began asking how i knew he was hungry. I just looked at the man in front of me enjoying his Mac and cheese and said, “I got you man. High Five!” And he high fived me back never taking his eyes off the rest of that amazing food in front of him.

Two weeks after this interaction I quit my job on the psychiatric unit. It left a lasting mark on my spirit and I knew I needed a break. I was disheartened and disenchanted to say the least. This was the first time that the reality of my sons disorder (and really all mental disorders) had hit me in a way that it hadn’t before. This was the first time that I realized that in the inpatient setting no one really knows anything about autism. This was the pivotal moment at the beginning of my journey with autism that I realized that really, I was in this alone. This was the genesis of my fears and on this day, I made the promise that no matter how dire the circumstance I would never take him to a hospital. I would never put him in a group home. If there ever came a day that he got violent I would bare it because the results of asking for help would be more painful than a few Bruises. I would not call the police, I would not enter the er. After 13 years on the psych unit now I have seen many physical altercations surely by now I should have the tools to navigate a crisis situation. No one knows my kid better than me… Right?

There is a certain unwavering anxiety that comes over you when you realize that you are not only the front line but you are also your child’s only buffer between the world that loves them and the world of the “system”.  I have no adequate words to describe to you the realities of it all. This is the side of the Autism that no one really talks about it because not many know the realities of the system that waits out there for them. I will admit to you that this is one facility and one experience but its real. I understand that every child, ever situation is different but if our clinicians are not educated how can they help our children and our families at a time when we need them to know how to help? This is why I come to you and say “stop hiding your realities. Stop not sharing your pictures of the hard moments. In doing this you are not preparing the world to help you and your child in times of crisis”. It’s great to share the positives and the triumphs. It’s WONDERFUL to see all of our children succeeding but our kids will not always be succeeding. There will be hard moments.

After two years of taking a break from the psychiatric unit I returned with a new set of eyes, an older child still nonverbal and with a lot more experience with the “tough” parts of autism. Since my return 5 years ago, I have seen only one person with autism but as i see the numbers of children increasing year by year I find it increasingly more important to talk about it. To share my experiences with the mental health community, especially the professionals because unless you talk to someone actually living it you cant know what the real struggles are. They can’t know how to help if we don’t equip them… it’s our responsibility as caregivers and advocates to help the system help us. We are a team after all.