Autism Caregiving and Mental Endurance

*Written on another platform July 26,2018*

Picture this it’s 630 am on a summer morning and while all the other kids are sleeping in on their summer vacations your kid wakes you up at 6:30 every morning It’s the same.routeine you hear him stirring, your door swings open and. You hear him unplugging the ipad you placed on the charger the night before in hopes for just one more hour of sleep in the morning.
After about ten minutes you hear the screaming in the living room downstairs and you sit stagnated knowing that really no one is in danger your autistic kid just stole the ipad from your atypical kid and your atypical kid wont fight back. Knowing that in a few minutes you will be down stairs playing referee and separating the two You take a deep breath and repeat some inappropriate words in your head and your day begins.
I took a tally today of the number of times my kid asked me the same question and when i hit 71 at 1pm i quit taking note. As i scurried around town today planning my middle sons birthday party i was already mumbling under my breath. “What else? What else can happen today? I had a near flat tire this am and everything i had planned for the morning fell to crap”. You see, i had planned to make my son a cake for his birthday party on Saturday and knowing that aiden would be home from school at 1215 i raced to get all the needed items. After purchasing all the necessairy items I realized this was already going to be a $50 cake and it wasnt even made yet! realizing this I packed up the kids and went back and returned everything i had purchased. After the last item was taken back i looked at the clock in the truck and realized only 20 minutes until aiden arrived at home and that meant that i would be stuck there for the remainder of the day.
This is where mental endurance comes in. Day after day it is the same routine. It is the same questions hundreds of times and the same battles. It is the isolation, the silence and the hyper vigilance. It is the constant state of anxiety wondering what will precede the next scream or the never ending fear of his eloping behaviors.
You see, i have alarms on all of my doors and one would think that would give me piece of mind and it does trust me. But even so, at least three times a day when things are quiet my adrenaline rushes and i run searching asking all the kids frantically where aiden is fearing that one time the alarms wont work. That’s just a small picture of the reality of it.
I have had people recommend i take anti-anxiety medications but often i counteract that recommendation with “but this is reality,. This is not some made up delusion in my head. I have seen him in a police car. I have had him run away. How is an anti-anxiety medication going to help to ease areality?”
I cant tell you how much self talk i have to do to get me through a day. I am my own therapist. I dont have time to go to weekly sessions. I don’t have time to sit back and feel sorry for myself. It is neither feesable nor productive. This is my life and to survive I have to focus on the logic. That is not to say that i dont have my moments. Those breakdown moments where i get angry or cry uncontrollably. I have those moments quite often but there are also those moments where i surprise even myself. Those moments where i can talk myself through the worst of moments like a professional without a hitch and walk away thinking “wow did i just survive that alone”?
Mental endurance… such a powerful term. I have read many articles how “autism moms have anxiety levels close to those of combat soldiers”…. Please do not think that i am, in anyway, or believe that what i face on a daily basis is even close to those who have stood on the front lines of war that is something i could not even imagine those are the true heros they are fitting for people they dont even know! What i will argue is that those with children of special needs dont have a discharge date. They dont have vacations they dont have honorary leave. This is a day after day after day fight. And that builds up my friends. There comes a point where it can almost become an obsession to keep your kid safe.
I cant walk into a store without first walking the perimeter scoping out if they have DVDs or not. WHether he is with me or not. And if i do find. A dvd i curse that damn thing in my head. And often ask silently “arent you obsolet YET?!”
In public you fear a meltdown because you know a battle will ensue and far worse than the embarassment is the fear that someone might misconstrue your attempts at passification as abuse not understanding that your kid is not “a brat” but rather is struggling and you are just trying to remove him from the situation using behavioral intervention methods.
Which leads me into yet another point. Autism parents as their kids progress in age and disorder begin to fear the police. There is a manifested distrust of those placed in fields of Law enforcement as the stories of officers unaware of autism symptoms arresting our children cross our news feeds on what seems to be a weekly basis. As we try to remain neutral we have to admit that we no longer see law enforcement (or any first responder) as a viable answer to our calls for help and so we manage as best we can behind closed doors and screwed shut windows.
Today felt unbearingly isolating. And as i swept my living room floor for the third time this evening I finally just set the broom down and said “forget it. I picked up my wireless keyboard and opened the notes app on my phone and just began typing and let it go. This after running across a post from a fellow autism mom venting about the hurdles of trying to get services for her son and coming along side her of her reminding her of my 5 year battle for help.
So next time you are stressed to the max and your kid asks you the same question fo the third time remember that there is an autism parent who was asked the same question over 200 times and not just one day but for every day for the past year. Take a deep breath. Answer that question and enjoy your kid. Because your kid is amazing.

I am still me-

*written 5-14-17* repost from another writing venue I have a few 😉

Today,  I’m choosing to do something a bit different. instead of writing about what it means to be a mother I’m choosing to remember who i was before I was a mother.  As I sit here in this empty coffee shop alone with no kids in tow I’m taking a breath to remember who I am and who I was BEFORE kids.

I feel so lost in the therapies, the diagnoses and the overall societal expectations of what the role of wife and mother entails that i often forget who i am without 500lbs of pressure on my back.

So for a moment let me take a deep breath and tell you about who i am beyond facebook groups, autism support groups, IEP meetings and homechores.

I am a dreamer, a hopeless romantic, an impulsive thrillseeker, a beer loving, hockey playing kind of girl. I love driving in the mud, if given the choice I will choose the backroad over the highway and i prefer camping over hotels.  I have a thing for men in baseball caps, t shirts and pickup trucks. I love loud music and bonfires. I have always been a wild child. A different thinker, a sensitive soul, everything hits me internally which means I’m consistently broken and consistently healing.

I have always felt like the biggest misfit in this world. As if there is no room for people like me. In high school I had to be homeschooled because I would walk in the front door of school and walk straight through right out the back door. I never did anything innately bad but being led around by the hand wasn’t really my style.

Where did I go when I skipped school? Most of the time I would drive back roads with the windows down and other days (when it was too snowy) i would go to my grandmas house where we would play aggravation or just sit and drink coffee in her kitchen. She always said she would eventually have to tell my parents but she never did. It wasn’t until the day of her funeral that my parents found out. My brother was telling stores about how he had spent his graduation party money on a car and stashed it in the barn at grandmas so my parents would find out. Then I finally told my mom the truth. SHe had no clue. I’m sure now that i am older i realize grandma took the mindset that as long as I was at her house I wasn’t getting into trouble. She was so wise.

My college days were the best days of my life to date. I signed the lease to my first apartment on my 18th birthday. I lived on north campus at uofm (even though i was attending henry ford community college) with three other girls from my hockey team. I had to get my gpa up before I could get into a university. I worked full time at pet supplies plus which was a pretty cool gig. I made a lot of friends and partied hard. However I worked harder than i partied and it was during this time that i found my love of psychology.

Eighteen months later I transferred to Eastern Michigan University and moved to Ypsilanti into campus housing. I had a room in a house shared with ten other people. I had the room that opened up to the roof where we would sit and drink beer and throw our empty cans at the drunk people walking home from the club a couple blocks over.

I worked full time, went to school full time, paid my own rent, my own phone bill, made my own car payments. I was broke! I can remember looking under my car seats (at this time a mustang not a minivan) for any loose change and throwing a party when i found $1.06 which meant i had dinner! A McChicken sandwich! Anything other than ramen noodles was high class dining and worth celebration.

I miss those days. Having kids was hard for me. I never wanted them. Aiden was a new years suprise, caleb was a shock and Sabrina was the last straw (hehe).

When i graduated college I was aidens momma and would find out a week later caleb was on the way but i still held onto the career dreams I had. that is, until the autism diagnosis came along. I lost all my dreams that day. I tried so hard to fight against the fact that this was the end of the career road for me.

I watched my husband walk across the stage and pass his licensure exams to become a full architect. I was sitting in the stands with spit up on my shoulder and a messy pony tail. I went through a period of anger that I’m slowly trying to get over. Im finally letting go of all my past expectations of what I always imagined life to be and replacing those expectations with reality. I have no more career expectations and I’m just drifting through life. I’m just trying to find contentment in the few moments of happy that come my way.

I’ll admit that I still hate sitting at home all the time and homemaking doesn’t come easy to me. My heart is still on those pack roads and my spirit is still lost  in that forgotten campsite at the end of northterritorial road. oh, and when people tell me “you are so immature” my heart actually smiles because it means i haven’t lost my spark despite all this world has thrown at me.

I still play. I still meet my girlfriends on the ice every Friday night and i still laugh at jokes and enjoy a beer or more. I’m still in here. Past the gray wisdom streaks in my hair and binders filled with insurance rejections, reports of low IQs and diagnoses I’m still here. And I’m still me. Still dreaming, still lovin’ and still singing to my radio down the backroads. I may have traded in the mustang for the minivan but i’ll never trade in my spririt just to fit the unrealistic societal expectations of what a mother should be. because more than being a mother I am me.

He Doesn’t See Her

He sleeps as she lays awake in bed

he Doesn’t see her as the loneliness washes over her once again

In the darkness of the day she had just lived.

She yearns for him to want her

Washing the dishes he left by the bed

Wondering how to calm the thoughts in her head

That come crashing in as she pushes them away

“Its just another day” she’ll say

Turning the channel from love songs to politics

fighting the same battles from the start of time

She takes a deep breath and looks around her

the emptiness becoming more apparent as the world spins

eighty degrees yet shes still cold somehow

but his arms never find her, she grabs a sweater and a sip of wine

for just a small taste of sweetness, in a world of bland

he doesn’t see her hair done, her eyes lined in black, lips bright red

just for him

as he walks quietly by her.

Juxtaposition of opposing views

from cubicles and computers to compassion and care

how could it ever work?

She closes her eyes and pushes past the loss of herself

until that one song, thought or memory hits hard out of no where

unwelcome, there’s no room left for anymore hurt

as the screams radiate from the other room

reminding her of her place in this world

caring for everyone but her.

She just wants to be seen as the walls close in

and she forgets once again…

As he passes her while she struggles before him

But he doesn’t see her.

Just asks her to warm up his meal.

He doesn’t see her giving up.

as she grabs his plate to warm it silently.

Hurting

Surviving.

Not sleeping.

He doesnt see the broken.

He sees the mess in the corner

the bills on the table the continue to pileup

sees his work to do list

the ten pounds shes gained

“you need to lose weight”

As she picks his socks up off the floor.

He doesn’t see her

Missing meals from the busy

The yearning for some sort of connection.

But he doesnt see her screaming inside

a face of composure as she fears her heart is beyond mending

he doesnt see her running. Hiding. Searching for safety.

he doesnt see her

 

 

 

 

 

News Flash! Summer is Here! “Circle”

Have you ever looked at your life and thought “I need to do better”? I have been looking at my life closer as I try to sift through it all to decide what it is is really should be doing.  I’m 34 and Im still not sure what I want to be when I grow, I still freak out when I look at my to do list every morning. I still fall apart at the slights tinge of anxiety. I keep telling myself autism will not take my life away anymore but today at work as I fumbled between calls from teachers and the uncertainty of it all I had to take a moment and close my eyes to collect myself.

It is the last week of school and I am in full out freak out mode. But this year, I think I did things a little bit better than I did the previous years. I hooked my son up with a GPS device so if he even walks out of the house it will alert me… I began my subscription last week and it has been the one of the most relaxing weeks of my life. I was able to sit on the couch for an entire movie this weekend without one outburst of “WHERE IS AIDEN?! as I go running up the stairs in a full out panic. Not one incident this weekend. I would have about ten of those a day. when i was worried I would just look down at the phone to my side and see he was in his room… Its the most amazing thing ever created. Thank you Angel Sense you gave me a portion of my sanity back and my typicals thank you for me not freaking out and employing everyone as we would all scatter and scream “I found him!”

I called Aidens speech therapist and suspended services for the summer. “can we ask for a reason why you plan to end services?” “It’s just too hard to tote three children to and from therapy and I think we can take this speech device from here. It was amazing working with you”. I have been breaking up with added responsibility right and left lately and I am so much better for it. My last big hurdle is ABA. That and I have to really think long and hard about where I want to be. I was offered a job back inpatient… BUT, I kinda have a heart for where I am now. Maybe I need to sit back and just be quiet on this one… Not my strongest suit, patience, but ya know, I am learning where I am and I am making strides, I think I have just been in intense situations for so long that I need to readjust to real life. The straight line.

I have been taking Aiden out a lot more lately and its been relatively successful. Monday, I took him to his school field trip to a park and a splash pad which turned out to be less than a success but he did get to see a firetruck and the firemen were so nice to him which put a warmth in my heart to know that they are taking the time out to get to know our kiddos. Aiden spent most of the time in my truck begging for my phone. we stayed about an hour and headed out. I took him through the drive through at McDonalds where he ordered his proverbial two cheeseburgers and large fry and momma stole the coca cola. We got home just in time to meet his ABA technician and I asked her “how do you feel about an outing? I need to pick up some window locks and door alarms. (It is summer after all and summer means lock down season).

We pulled up to lowes and parked he got out of the car as we left all technology behind. Surely there are no DVDs here so I figured we were safe and I was so so so right. With ABA tech in tow we walked down the aisles talking about life and forgetting about autism. He stood nicely while i asked the store clerk where to find what we needed and followed ups from here to there without incident. he even stopped us at one point to look at some electronic house security system that adorned a logo he favors on the box. We stopped and talked about it and when we needed to move along he walked away still smiling with no problems. As we walked towards the self check out he asked if he could have a bag of Doritos and before I could answer he was standing at the scanner and had it already scanned. I handed him the window locks and stood back as he scanned and bagged all our findings with no help. When it came time to pay he grabbed my debit card right out of my hand and inserted it. It was quite amazing. We walked out and both his tech and I looked at one another in shock. It was short of a miracle really if you know where this kid came from.

There is nothing better than watching someone progress however small. When someone opens up a computer and you see a graph with a line pointing upward. Theres no feeling like it. I got to see that this week in two instances and my heart was so full because I know what that line means. I was told this week “if you dont embrace the data you embrace failure” I say bull on that… Sure, data has its place, but data is one dimensional and only shows what it is meant to measure… One aquired skill can mean so much more than what it is measuring. Ill challenge that statement all day everyday.  I say “embrace the data but embrace the individual more”.

I have been waging a battle in my head this past month as I watch the summer vacation coming closer and and closer. Today as I realized through three separate teachers texts while at work that I forgot to send in my daughters school hearing aids and forgot to sign my other kiddos IEP addendum to add social work, and forgot my other sons permission slip for a school field trip I reminded myself that I am not a failure I am just afraid of what this summer will hold. I am fearful of the 24/7 fear I am about to face. I am fearful of a babysitter not showing up for a session, a forgotten open door, an unlocked window, the uncertainty of how to get groceries in the house with autism in tow, the change in my sons aba schedule, the laundry, the housework, the soccer schedules, and whatever else life will throw at me when I am not looking. I am fearful of failing my typical children in my fight to save Aiden. What are they missing out on? How do they feel about all of this?

Today, a neighbor kid down the street looked at me as I was getting Aiden in the truck and asked, “can he talk?” I stopped not sure of how to explain this to a kindergartener and said, “Yes, he can talk a little bit. We are working on it.” and smiled a small little smile to reassure him of the situation and the kid just looked at him and said, “well hes weird”. At that I just turned my head and started buckling Aiden’s seatbelt and said happily “well  we gatta go we are late for soccer we will see you later!” I am slowly getting better at finding the answers even if I don’t have a viable explination. I have been more forgiving of myself  on this as I have found that the professionals don’t even know the answers to these questions.

“Blue, blue, blue….Circle… Seven… WXYZ Detrrrrrrrrrrroit” he says as he points to the channel seven logo at the bottom right of the screen during the news. He grabs my phone and begins taking video of the logo as he repeats this phrase over and over so he can watch it later. I have gained a whole new respect for this logo. I even painted his room with the idea that someday I might find someone to paint the channel 7 logo on the wall. With him around, life just looks different.

WXYZ-TV LOGO

“Are you planning to work full time when the kid gets older” my husband asked me in contemplation this evening after a full day of Aidens ABA and work ABA and soccer practices after missed breakfast,lunch, forgotten permission slips, hearing aids, IEP addendems my thoughts came rushing in. I don’t know what I want to be when I grow up. I want my masters but how? How can i do that when I can barely get a forgotten grocery item with autism in tow. Work is hard… all I could think to say was “yes” and left it at that. I grew up wanting to be a full psychologist. I went to college with that expectation. I hated behavioral psych it was my most loathed class. I found it empty. Here I am working in the field. It has its place though I wish it would overlap with humanistic psychology just a bit more….at all… There are days I still close my eyes and imagine myself driving down the coast in a mustang convertable… but those days are less and less as I realize that Aiden IS my masters degree and my mustang? well, that’s now a three tone dented up rusted minivan with chipping stickers on the windows. (for the record I had to sell my actual mustang when baby #2 came along… two car seats don’t fit so well in sports cars)

The hardest part for me personally in this journey is setting down what I wanted for what is. Some may say that I am placing my own barriers in my way that if I really wanted to do it I would… but at what expence? I don’t know. There are days i feel cheated. There are times i see fellow ex college mates working on doctorates and know that I used to keep up with them academically and yet here I am pigeonholed. I feel so stuck. Lost. I keep trying to tell myself that I am not alone but the comfort in that fact is waining. I don’t want to be mediocre. I don’t want to be average.  I don’t want to be silenced and hidden behind the brick walls of this house. I want to be out there doing something important. Instead I find myself staring at words pouring out onto another blank screen filling it with words that really in the scheme of life mean nothing. Tomorrow there will be another blank page and I am not the type of person that finds inspiration in that fact.

I just want my car back. I wanna drive it down the backroads of Ann Arbor. Is that too much to ask? someday maybe.

mustang

 

 

When Therapy Hurts

Today my sons aba session brought me to my knees. I walked in from my work session of ABA and as I walked in the door I saw my sons technician right away and I knew. They were about 15 minutes in and her face said it all. “hi, its not going well” she said with a pale exasperated look on her face. My gaze turned to my son who adorned an almost pained look on his face. “He has already tried to bite me 5 times. he hasn’t gotten me yet”. I took a deep breath and set down my backpack that holds all the ABA therapy supplies for work and walked into the kitchen and the look on my moms face matched the feeling in my soul. She couldn’t wait to leave… I wished I could leave…

As the door closed behind my mom his screams began again at any small request for compliance. I rounded the corner into the dining room and found the technician on the phone “I am texting the BCBA” she said. “Aiden are you hungry?” she asked. “yes” he said as I set the pizza and cherry tomatoes before him. He would not sit at the table and went to get up and as we tried to keep him at the table he let out a loud scream and requested to go on the trampoline. We allowed him. I stood in the kitchen pretending to cook (my dinner had been cooking in the crockpot since before i had left for work) as my mind raced. I wanted so much to protect him. I wanted so much for his sessions to run the way I run mine at work. I wanted his feelings to be verified. I was hearing his screams being met with “do this” and the faint sound of a knock on the table met with his growing hands in compliance as his face still held that pained frustrated look.

These are the days that its hard. Its ten P.M. and I am running on approximately three hours of sleep. I sit writing emails to BCBAs, while my husband sits in the chair working and me hiding away. There is an old episode of The Office playing on the tv before me but my headphones are on. I just cant relate. Intermittently I hear my husband laughing at a funny part once in a while and I wish I had the ability to let my guard down. But not now. Not today.

What am I doing? Am I doing the right thing? Am I doing more damage than good? As I write to his therapist “can you please send me the graph of his current progress” I am realizing more and more that what my question really is is a cry for some sort of validation in his treatment plan. Where are we going with all these questions we continue to script? Whats the point if he doesn’t understand the purpose? The concept behind the questions? Whats the point if he can name the 3 animals on your list? Life is not a script. Life is a balancing act of transitions and normalacy. Life is adapting to your environment. Is that whats going on? Am I at a point where I should be adapting and I’m fighting it? My gut is telling me to pull the plug… But then what? He’s 11 and the answers seem farther away than they have ever been.

The thing about Autism therapies is that if you choose that ABA is not right for your family or your child you really have no other options. sure you can get a half hour of speech a week, a half hour of physical therapy and occupational therapy but how much can you really accomplish in a half hour once a week?? ABA is the only thing that gives you hours of intensive therapy. Its a monopoly really. In some sense its like ABA or nothing. Now, I am not downplaying how great ABA can be if its what i call “Loose ABA” but so many times its taken to the extreme and dissects our kids to the point of insanity. “your error correction is amazing!” “Great probing you didnt prompt once” You added “come here” thats an extra prompt mark it wrong”.  Everyday I find myself tilting my head more and more in confusion. If we keep pounding him with this stuff what is his real reward?? More and harder programming… Its not like in school where you get the reward of a good grade… Its not like there is some sort of honor roll to strive for. You master a program and you don’t get a certificate you get another more intensitve program in its place. there are no graduating grades, no measure of upward… just a flat line you keep treading.  ABA is incomplete. I feel like we are consistently asking Aiden to learn a subject he hates with no relief of having time to go to the class he loves. I mean what got me through math class in high school was knowing the next hour was writers workshop…. its the equivelant of him going from math, to math, to math to math for six straight hours. I don’t know. I guess ABA has lost its spark. In his case at least. And in mine as well. I’m so over it.

We are losing him when they are here. he is getting harder in life in general but when they are here he has no happy. and its up to me to fix it. I’m scared. That’s the best I got right now. fear. Can i do this on my own? Lord knows my trust in these therapies are near obsolete. I

Short Note: Breathe.

I’m sitting here trying to figure out what music to play in he background as the blank document before me remains empty. Trying to recheck myself  as I drink my mocha caramel xtra hot I scroll through christian, country, a little NF to fill the void and settle on a song and hit the  “repeat” button. Mindless, a song that hits about where I am. “don’t go looking for the reasons don’t go asking Jesus why. We aren’t meant to know the answers they belong to the by and by”. A chill melody meant to calm the soul. Just what a momma needs when everything seems to run on autopilot.

I’m sitting here in this coffee shop watching my free time tick slowly by while ignoring all the to dos that adorn my daily planner resting open to my left. I get about 6 hours a week to take a breath the rest of the time I find myself reminding myself to breathe. No really. I legit forget to breathe sometimes. I think I sometimes forget that I am not the one who is autistic. My whole life revolves around this thing called autism and I sometimes need to shut it down but somewhere along the way I feel like I forgot that I am NORMAL and I need NORMAL in my life. A conversation without autism…. but how? what? What do I talk about then? What do I have?

My world seems so different than everyone elses. On Sunday after my CPR class I was driving home and got a call from my husband “Aiden wants to tell you something” I heard the phone click to speaker phone and heard his moan in the background as my husband coaxed him to “talk to mom… Tell mom what you want”. His request was met by a long silence until I said, “Aiden its momma, what do you want?… “I ganna…I ganna… I ganna go Nana house… happiness is a warm blanket charlie brown DVD, Minion blanket… Yes?” he just keep repeating this until I heard the phone click back to normal and My husband said, “can  you take him to your moms? hes incessantly asking and its driving me crazy!” “Ill be home in ten minutes” I said as I pushed the gas pedal a little harder. I took him to his nanas house immediately after setting down my things and putting on his orthotics for his feet and packing his minion blanket while apologizing to my mom and explaining “the autism is strong with this one we have to visit even if its just an hour”. He ended up staying the night and after arriving home around 4 my husband and I decided a drink was in order so we loaded up the typicals and headed up to a local chain restaurant called World of Beer.

I sat there sipping a strong drink while wearing my blue Behavioral health jacket and looked around just watching people. The firemen were there because a woman had fallen on the floor and for once it felt good to not be responsible for the care of the one who had fallen… I didnt have to chart the incident and pic2I got to just sit back and enjoy the view of the firemen (am I right ladies? and for the record she was fine it was total protocol). It took me 10 minutes to realize that the four of us were having a good time. David and I were just talking and our kids were doing normal kid things like interrupting us and saying silly things. That’s when the thought came to me. “Wow, is this what its like for normal families? This is so easy… This is actually fun!” and then the guilt came washing over me. I sat silent watching the bar ahead of us. The people talking. The couples drinking. The town drunk sitting alone with the telltale red face. I began to talk myself down saying “but he has made my life so full, he has taught me so much, he________”. I couldn’t bring myself to say, “Its okay to enjoy life without autism in tow. Its okay to take a break. He is where he wants to be.” Sometimes I think special needs parents need to take a step back and give themselves permission to say “this shit is hard. I need a ________ free day” and be okay with it. Its not our kid we need a break from its the disability, its the incessant hard.

 

 

 

When the Special Life Crashes In

I’m usually the mom that says “I got this. Its no big deal. Im the one to push through it all and just keep pushing foward. I don’t yell much. I don’t protest much. I just keep going but then there are those moments in the quiet when something happens or when a song comes on the radio at just the right moment and it all comes crashing in.

Like today, after waking up and getting my special needs son on the bus and rushing over to the doctors office two towns over to figure out whats going on with me. I havnt felt good for a while now. My hair has been falling out in clumps when I wash my hair and I have been running exhausted for the last few months. I finally got brave and went to the doctor when I had a free moment and he did the full work up. “Rest…You need rest” he said. “your blood work is awesome for the most part except for one little thing… did you know that this shows you are getting over something viral?” I just sat staring at him eyes still blurry from sleep. I rushed from there to my favorite hang out to do a CPR course (I would later be told would not count and would have to redo), rushed to work, then headed home for the kid round up and to cook dinner.

I stood in the bathroom looking at the showering task analysis hanging in the shower with the radio on and that one song came on and it was over. I slowly sat on the floor next to the tub where my almost 11 year old son sat crouched on the floor of the bathtub drinking the water from the handheld shower head and put my head in my hands and cried knowing his therapists would be mad that I was letting him do this. This is not in the plan but then, I’m not his therapist and sometimes that will just have to be okay.

I thought about the kid down the street, I thought about all my friends in the same situations and I couldn’t help but cry harder. Prescription: Rest, Special needs Life: work, worry, work some more and worry somemore.

I talk autism a lot, but a lot of people don’t know that I have two children I call my “typical children” that have been diagnosed with a form of progressive hearing loss. When the Doctor came out and told me that my then six year old son was “a good candidate for hearing aids” I laughed. No seriously, I laughed right in her face. I thought it was a joke. She just stood there with this confused look on her face “No seriously this is not a joke”. This was followed by his sister failing a hearing test at school and me repeating the same appointment and her being placed in hearing aids as well. This meant a whole new journey. Different battles. Now, my son with autism has Pica and has a tendency towards rubber. Guess what hearing aid ear molds are made out of? Yup! Rubber. I cant even begin to tell you how many hearing aid ear mold we have gone through because he has eaten them. How many hour trips and $180 bills I have had to fork over to get them replaced before I finally gave up and said to my older son “if you can’t be responsible With them you can’t have them.” if that sounds mean please understand he is hearing enough, at this point, to make it and he has a special pair just for school that is hooked up to an fm system.

I try to sit still until I look over and see a mess and clean it. Then i look outside at our less than perfect landscaping and go out and try to mow the lawn as best i can in between door alarms going off and frantic checks to make sure my son hasn’t run away again. In my quiet moments i sit staring out the window at the neighbor across the street calmly washing his brand new truck and as I turn my attention to  my Tricolor thirteen year old car that has made it through about 3 accidents at this point that weren’t my fault (no really they weren’t I have reports to prove it!) and I cant help but think what a metaphorical picture of my life that car is. Ziptied bumpers and taped headlights but still running like a champ. Only I know that underneath that fender its strength is compromised by the bent frame. That the zip tie is there because the metal is ripped and wont hold a bolt. Who knows what it will do in the next accident… lord knows it wont be that strong… and if I don’t change something soon neither will I.

I laugh with my friends about silly things that happen through the day because if I dont spin it in some way to make it funny I cant cope with it. Humor has become my mechanism for survival.

The other day as i sat in the waiting room with my son with autism i knew everyone was looking and staring. I noticed his pants were on backwards and i knew the couple across from me was watching with interest (no judgment it was not a condescending look) and i just said knowing they could hear  “oh buddy your pants are on backwards” i heard the man chuckle and i just looked up and said “well, he dressed himself and Im proud. Now a days I pick my battles” and the couple smiled warmly and the man said “sounds good to me”. Of course this was before the meltdown down the hallway towards the room where i was to get my blood taken that left all the nurses just standing and staring as I wrestled him into the room hoping and praying he would sit still long enough just for my blood to be taken… Thank God he did and after all was done he sat staring at my bandaid and said “band aid” and the nurse gave him a sticker that he immediately put in his mouth and ate. I just smiled as the nurse looked at me with a look of both perplexity and compassion. I took in her look and walked out saying “good job buddy” as everyone stared at our backs in silence as we exited and the door closed behind us leaving a wave of “i feel so bad for them” thoughts in our wake.

That’s a day in the life. That’s how it always goes. sweaty palms. sweat soaked shirts from fear that sometimes comes out of no where. A psychologist on first glance would probably say I have generalized anxiety disorder and hand me some form of a benzodiazopine like ativan or a xanax if they are old school but truth is the anxieties I have are real. They are not unwarranted. He will run. He WILL eat things he shouldn’t. He WILL trust people he shouldn’t. He WONT tell me if he is being abused he wouldn’t even know what abuse looks like. He WILL run right out into a parking lot with out a care. He WILL get on the roof, hes done it. He WILL touch a hot stove, hes done it. And that’s what people on the outside don’t get. The constant fear and anxiety. The constant worry about safety that never subsides. School does not give me a break, most days it gives me more worry. Then there’s therapy and the constant questioning of whether or not I am doing the right thing. The “what if” questions as you watch the therapist pressing him as he screams and bites them. “What if they are causing this behavior? What if he does hate this? What if this is more harm than good?”

Special needs parenting is torturous sometimes. It’s a true lesson in endurance. Its a lesson in what is truly important and ya know right now pants put on the right way is not important to me. Its a test of mental and emotional endurance. Its ups and downs and tears near bathtubs when you are going apart from the ABA plan. Its three different IEPs every year. Its an act of love. That’s the only thing that gets me up in the morning. Its knowing that I am not in this alone. There are so many out there living this life and finding Joy in it. A joy that most days I can find. But today, Today is my “my life is special but I’m crashing” day.