Corona Virus, Autism Parenting and the Severe End of the Spectrum

“I am sending home a list of resources to help your child to process the corona virus. Attached is a social story and a list of projects you can do to keep your child engaged in learning during this unavoidable break due to the corona outbreak. If you have any questions feel free to reach out to me be safe”.

As a parent I am sure that all of us have been met with this email. I am picturing those of us with children on the spectrum attempting to explain to our children why our calendar has changed or are scrambling to figure out how to quell the imminent melt down when their Saturday run to salvation army to buy DVDS that he/she doesn’t watch anyway has been cancelled or why their one food that they eat is no longer on the shelf. For many of those affected with autism there have been challenges that could, at least in part, be explained via social story, a slight distraction using minecraft or fortnite. But, what if your child doesn’t talk? What if, as a parent you are standing there watching your son/daughter stare at a calendar as they moan and rock back and forth and you know there is no explaining it to them?

What if you reach out to a BCBA or another therapist for help (because therapy is also on hiatus) and you are told “we can only remote in” as your child lays screaming on the floor biting his hand. You decline knowing there is nothing they can do to help you, at least in the moment, because the consistency is gone and you have no reinforcement strong enough to counter the overwhelming feelings your child faces as their most looked forward to events have been taken away and they can’t understand why. The teachers’ email runs through your head and you begin to feel a sense of anger in the moment as you think to yourself “A social story? really? yeah right” as your child continues to spiral downward and there’s nothing you can do to stop it.

For many of us with children on the spectrum, it is not the isolation that is getting to us we are used to this. We have spent many days in our homes separated from the rest of society. What is getting to us are the expectations that we are like the others. The “just talk to them in a way they can learn” subset of those on the spectrum. (I do not come in anger but rather with an intent of education)

A social story wont work with my kid. Moving the outing to the next week but going twice instead will not help my kid. Your list of things to keep my child on track while school is not in session will not help my kid. These things, while done with the best of intentions, inadvertently make it worse for some of us.

What then, will make it better? As I have spent the last many nights while this quarantine has been in effect with a restless, anxious, biting himself and oftentimes flailing child long into the night I have to wonder where the help is for those of us battling the helpless end of the spectrum. Here is what I have found lessens the impact. I can’t say makes it better because that would not be reality but hey sometimes anything is everything.

First off, that social story, if it makes you mad, allow the anger. Print that crap out tear it up and throw it away if it makes you feel better. IF its useless to you, its useless to you. Hey, made me feel better anyway.

Second, look at your kid, Therapy is not there (I know right, FREEDOM), here is your chance to just be mom/dad. Let your child flap, let your child watch the same 5 seconds over and over (while you wear the noise cancelling headphones for once). Keep your child safe but allow them to just be. This is your chance to reconnect. There are going to be crazy hard moments. Allow them. This is your time to let your child freely roam which means, you are learning about your child with no outside forces to structure their behavior. You just may, for the first time in a long time, be seeing your actual child not the muted therapeutic version. Why is this important? Because in watching your child freely roam you are learning more of what fuels them which can be very very motivating in therapy.

Third, the world doesn’t get it. It wont get it. Even the majority of the autism community won’t fully get it the severes are the forgotten about tribe because you won’t see us at the autism friendly outings, our kids can’t handle it. (again no anger in this statement but its the reality). Which means, yeah, we are kind of on our own, but then again we are not. It feels that way now, because the supports we had in place are no longer available to us so its kind of a shock to the system, but at 2 am, when that flailing, screaming, hand biting beautiful child finally succumbs to the effects of the medications your doctors promised would help open your laptop there are others there taking a breath just like you. Taking in the few hours of silence knowing they should be sleeping but this is their only chance to reset and connect.

Fourth, try to look at the bright side. I know, I know, this is hard as your child is laying on the floor screaming and all those things the teachers sent you as “tools to keep your child on track” are running through your head. As long as your child and the environment are safe, remember that this is a normal though taken to the ultimate extreme reactions to disappointment and fear. No pressure. No one is standing over you telling you how to respond. Sometimes, I have found that allowing the behavior, as long as its safe, has actually lessened the behavior in the long run. Kids on the spectrum dont regulate like we do. They need more time. Think back to the last time you just wanted to scream, Maybe you allowed it. Screamed into a pillow for twenty seconds and felt better. Now multiply that emotion that made you scream by 1000 and add to it your inabilty to regulate. Now, you need to scream for five minutes to have the same effect. Thats kind of how autism works sometimes. Sometimes we need to just let things play out I think. Its how we grow.

In closing, to all my caregiver friends of those on the severe end of the spectrum I get you. I understand. Let the pressure go. Enjoy your kid. Let them be. Look at this as a “typical break”. Laugh at the posts from those “typical parents” as they try to process this isolation that we have been doing for many years and will be doing for many years to come. We have already mastered this. What we haven’t mastered is having people in this with us. I guess you could say, to us, “It’s too peopley in here”.

Cheers.

Simplification, Sweet Simplification

Have you ever battled something so long that you forgot how to fight? as I stand there staring out the window into the darksess all I can hear is silence around me as the music plays through my headphones. Don’t know what I mean? Think that doesn’t make any sense? Ask yourself what it meant after your last chaotic day, your last “how do I get through this” phase of your life what the silence of a loud song can mean.

Everytime I sit and stare at a blank screen I hit repeat in tab behind it. I type one letter, then the next until I find myself and I let go. I breathe. One thought is allowed to flow into the next until It all comes spilling out. Whats in my soul tonight? What is it that is hiding just below the surface as I hold my breath through the teachers’ phone calls, the autism outbursts, the screaming, the laundry, the loneliness… Survival… My word… My way of being.

I stop and remind myself to breathe. I always take the long route from commitment to commitment to check in with myself. So tired of hurting, so tired of giving all of me until I have nothing left. The nights keep getting longer and longer as the worry sets in and I dream of better days. I think of the sound of the ocean and what that kind of power must feel like. I try to imagine what it would be like to have that kind of control with no fear. What would it be like to have any kind of control of my life. Autism came and shook the very core of my being and in my fear I let it take everything from me even my dreams of love. I lived the lie that autism was the excuse to deny myself any parts of who I truly am. To show weakness was to admit defeat. To want love while in survival mode is to wave that white flag. I had convinced myself that what I needed was not love I needed someone strong behind me. I was wrong.

I had it in the back of my head this entire time that if I were to allow myself to feel love or any sort of soft emotion that I would fail. To love was to let my guard down and a guard that is down is not protective. I had convinced myself that I had to keep the adrenaline levels up because if I didn’t I would not have the emotional distance to deal with the things life was throwing at me. What did this look like? It looked like 14 years on a psychiatric unit despite my fear. It looked like chaos and inability to sit down for even a short half hour show. It looked like midnight shifts even though I had babies home that would be awake by the time I arrived there and would have no chance at sleep. It looked like auto pilot. It looked like someone chasing after chaos to hide the fear inside.

I took the first  step toward peace in November of 2018 when I let that psych unit door slam behind me as I promised myself I would never set foot on another psych unit. I took the second step as I de-cluttered my mind of responsibilities that were not mine. I began to let control go and began to tell myself that perfection was not and would never be attainable. I began to take every negative thought captive and began to ask “why am I thinking this way” “Why am I so angry”. That’s when it clicked. Anger. thats it!

All my life I never allowed myself to be angry. I always looked at the world from everyone else’s perspective. I was always the “yes” person the “its no big deal” person… I was always the first one to apologize even if it wasn’t my fault just to curb confrontation. But more and more as I slow down, the anger that has been just below the surface is coming to light. As I allow it to surface I can’t help but confront the circumstances that brought me to this place in my life.

I am beginning to stand up for myself little by little one small step at a time and with every small step I feel the anger subside. However small the step, the fear is still there. The unrelenting uncertainty but what I am finding is that the world is opening up to me more than I ever thought that It would and the anger is lifting as my confidence grows with every small victory.

I stood in the laundry mat today doing six loads of laundry at once and watched as the clothes dried in the dryer and thought “why didn’t I think of this before? A whole days work done in one hour… Simplification… Sweet simplification’. Not only was it simplification but there were people. I watched the people around me and loved the calm of the older man reading a book while his one load of laundry spun I marveled at the middle aged man sleeping by the window and wished I could find that sense of calm. The clean smell of all the different laundry detergents intermingled and danced creating a fragrance of connection. I had traded the cold lonely basement at home for a bright person filled place where everyone was doing just what I was and for the first time in a long time I felt connected. I felt normal. I sipped my vanilla coffee and took a breath. For the first time in a long time my head was above water and I wasn’t struggling. One moment of safety. I soaked it up until my clothes were dry.

I have begun to swim against the current when life’s demands are not in line with reality. I have begun to say “no” when something is thrown at me that will disturb the peace that I am trying so hard to find. I have begun to remind myself that autism does not mean prison. I have begun to sleep and not worry and let things happen as they do but in reality no one has any control over what happens in life despite how “together” or “in control” they may seem. What they have that I didn’t formerly was peace. And that is what I am chasing after one decision, one step, one small omission at a time.

Autism update Jan 2020-Aiden’s Journey

well, its 2020 and we made it. we are now starting our tenth year on this journey and this year has seen a lot of ups and downs. Ill start with the downs only because I love to leave my writings on a high note so I leave a star at the paragraph where things get good so those of you who like to deny the hard parts of autism know where to start reading. Why, because life is hard, autism is hard, this parenting gig is hard and I get that. Some of us are at a high place on our journey and and want to revel in that while we have that quiet moment and others may be digging themselves out of their own hole and cant handle the worry. But then, on the flip side, there are those that are curious of what may be in the future or maybe there are those researching the reality of life at home with severe autism and wish to know every facet of “spectrum life”. Anywhere you are on your journey I support you, no judgment here. Kid peed on your couch again? pull up a chair let me tell you about the 3 couches I had to throw to the curb in the past two years.

Aiden is 11 now. Prepubescent and unpredictable. Back in October we had multiple phone calls, texts and incident reports that Aiden was showing aggression toward teachers and staff. This has always been my biggest fear that he may become aggressive and it appears that my greatest fears are being realized. Its odd really, he has begun “attacking” his siblings for what seems no discernible reason. He will, seemingly out of no where, just lunge at his brother or sister and bite them or pinch them. This is a behavior that we have yet to pinpoint a cause. Its amazing how tumultuous the soul in a parent gets when they have a responsibility to protect all their children. When one child goes after another its always a battle of who needs protection especially when special needs is involved. On one hand you know that normal discipline does not work with spectrum kids but yet you have a responsibility to the other child to attend to the issue accordingly. I have no adequate words to describe my heart when his six year old little sisters voice said today through tears after he bit her today “the medicine isn’t fixing him”. It;s soul crushing.

His aggressive behavior in school required a behavior intervention meeting involving the behaviorist at aidens school, his BCBA, his case manager at school me and his dad. We got everything hammered out it seemed until his father and I headed out to the parking lot and had a disagreement and mean words were exchanged as my van remained in park as i stared at his shoe he had lost near the entrance of his school as evidence of the we battle we had getting him into the building. Just another day in the life of Autism parenting. The ever dreaded fight when parents don’t agree on an approach to the behavior. but hey that’s part of this autism life.

Aidens technician of over a year and a half called yesterday with a quiet, fearful apologetic tone and I knew once she said hello what this call was. It was a quittin’ call. I have had many of these in the past. “Hey, that’s the nature of ABA no one really stays with it” I said as I forgave her for leaving, easing her worry of any chance of my springing some sort of tears. I’ve been through this. Many, Many times.  I know no one will be there through life which is why I stay active and attentive in therapy sessions. The only constant in all of this is Aiden, myself and autism the rest is about as solid as the ocean. Which is why I went into ABA. they say knowledge is power. IT is not just power, it is peace. I am not afraid because I know what to do.

I don’t know why, but the last week Aiden has been having potty accidents again so today I finally broke down and bought a plastic mattress cover and a pack of XL pull-ups with the prayer that this regression will be shorter lived than the last bout of potty regression. the pull ups say they go up to 125lbs and I pray that this all ceases before he hits that mark. Praise God that in both bouts with regression, knock on wood, he continued using the potty for #2. Due to the numerous losses of couches in the past I have put covers on the couch cushions as well, just as a precaution.

Our stair case to the upstairs is in shambles as Aiden has a new past-time of throwing things down the stairs and screaming while he video tapes it. It was tolerable, almost cute really until he found a full cup of coffee and threw it down the stairs two weeks after we had the carpets cleaned. Once again, just another day in the life.

***** the upside***** (Because I promised)

Aiden has become quite adept at YouTube and has hijacked everyone’s accounts in the family and is posting “DVD opening videos” so he has a hobby. It may be obscure but hey hes not the only one so I am in hopes he is finding those that understand him. Thank God for the internet.

His favorite Christmas gift was a new DVD player from his grandma Lola that looks like a laptop computer and he has been carrying that around every where with him.

He has developed somewhat of an obsession with my day planner and often asks me to write things that he wants to do on days he wants to do them. It looks as if he has Miss Katie’s house every Thursday and Nana Lolas house every Sunday. He won’t stop obsessively asking until I write it down. When i say, “Aiden we have to call and ask Miss Katie” he will often reply “No call her” as if it is socially acceptable to just show up unannounced to play with her DVD rack which I find amazingly cute.

Another obsession he has recently acquired is with Chips and Salsa. Its become one of the staples in our house. He legit goes through three jars a day :). That’s one way to make sure hes getting his veggies.

Well, that’s all for now. As always thank you for all of your thoughts, prayers, words of advice, phone calls (for those close to us) and for following our journey. I hope those of you riding the spectrum wave are in good spirits and never lose hope no matter how hopeless or slow things seem because in the end its hope that gets me out of bed each morning. Even though I may not know you by name, there’s not a day that goes by that i don’t think of all those running this course with me. Cheers to all of you and I pray that despite urine soaked couches and coffee stained carpet you are able to find the humor and most importantly the love in it all because its always there you just have to stop, look around, and wait for it.

 

 

mid morning ramble

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

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

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

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

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

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

 

Beauty Beyond the Data

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

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

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

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

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

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

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

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

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

 

 

 

A Summer of Lessons

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

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

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

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

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

aidendata

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

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

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

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

aidenhappy

 

 

 

 

Epiphany? or Am I Just Bitter?

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

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

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

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

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

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

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

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

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

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

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

The Forgotten End of the Spectrum

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

psych