Slipped away

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Autism, CBD and Complete Irony

So, this month I took a leap of faith that I never thought I would EVER take. For the past year I have been seeing that my sons anxiety and aggression were rapidly inclining. The push for medications from the professionals working on my son’s case was becoming increasingly stronger with each passing appointment.  I had tried just about every behavioral intervention out there. I tried adding more sensory items into his environment and even began to alter my schedule to provide for more “cuddle time” to allow more time to focus on holds to promote safety. I had begun to dwindle down on therapy time and even requested his therapists back up on what was expected of him in therapy with no significant improvements.

He was not attending at all to tasks in therapy and his ability to focus on any task for longer than thirty seconds was waning. He was no longer interested as evidenced by his laying down during times where he should be working in therapy. At meals when we went to restaurants he would often slouch in his seat or even lay down completely on the bench beside me with his iPad occasionally reaching up for another french fry on his plate. His yelling out was becoming louder and more often and he was losing control and I was losing hope.

I was three weeks away from an appointment that I new was going to be starting him on medications and I was dreading it. I had tried so hard to avoid medications but at this point I could see him struggling internally more and more to stay even.

I had heard a lot about CBD oil but had always dismissed the option being that I did not want to “drug my kid”. I had many friends who smoked the stuff and I was always declining and sitting that activity out. I even would tell people “that stuff is so bad for you. Im not getting arrested for that” and often i would be met with some coy rebuttal at how it is less dangerous than alcohol and the arguments would progress form there. But at this point now that it has been legalized in my home state of Michigan I had begun to see many parents using it with their kids on the spectrum and had begun seeing positive improvements in their children and so I began reading and researching. I could no longer, in good conscious, say it was not an option for us. It was either strong psychiatric medications (and i knew the effects of those) or CBD oil. And so, on a whim, I walked into the hempworx tent and looked at the product before me trying to push down all my prior views on Marijuana. As the kind woman sat in front of me talking about the many benefits of CBD I got what what I could as I battled to hold on my my wiggling 10 year old autistic son. I knew at that point I had to try. I owed it to him and to myself. I am a believer that it is up to me to “leave no rock un-turned” and I reminded myself of that as I filled that first dropper and hid the first dose deep in a cherry tomato.

That first day I noticed a difference. Many people say it could take weeks but i noticed right off. He was not screaming while we were out garage sailing. He was not trying to wrestle my phone out of my hands. We arrived home that night and my husband and I looked at one another knowing we both noticed it. We continued with the same dosage the next day, this time without hiding it in any food. Straight up.

After, about two weeks it was becoming increasingly evident that this was working. I kept stopping myself to recheck that this was in fact improvement or if i was just so hoping that it would be. But then people began to come to me saying “he is so much calmer in church” “I could see he was so much calmer when I came over today”. But it was three days ago when it was solidified.

We had an appointment with a specialist and I did not tell her he was on it. I had done this on our own accord. Now the first visit with this doctor Aiden was all over the place. he was melting down up and down the halls. He would not leave the laptop and desktop computers alone and the doctor could not get him to attend to anything. She added a diagnosis of ADHD and recommended a medication like ritalin or even an antidepressant to help with his OCD. She replied that “he is very bright but due to his distractability medication is recommended”.  But this time, this time was different.

As we walked into the foyer the nurse asked him to get on the scale, he complied even giving up the iPad. She then asked him to go to the ruler on the wall to see how tall he was and again he complied. He walked down the hallway passing computer after computer with no issues. When the doctor finally entered she began to take down the information and we began to speak as Aiden sat quietly with his iPad on the little doctors exam bed.  When it came time for her to assess Aiden she asked Aiden to turn off the iPad which he did and i gently took it from his hand and set it on the floor. He made no attempts to recover  it and as the doctor asked him questions he began to respond. I Saw the surprised look in her eye as she said, “you have done great with him mom he is like a totally different kid. I’m truly impressed”. As we ended the appointment and I read the doctors appointment notes and recommendations I began to cry. My biggest fear was starting him on psychiatric medications. Working on the unit I had grown to harness an avid fear of them as I saw what they could do to people and I had developed the belief that once they were started they were very often never stopped.

As I sat in the car reading the note I began to first let out a sigh of relief that we were not only being helped by a more natural means and then I began to laugh at the realization that among all my weed partaking friends I would be the first of them to get a medical marijuana card. While the CBD we are using is, at this point, THC I plan to try that route here in the near future as I am seeing more and more people having success with it. Moral of the story, Natural means work. Do they always? No. Do I have any regrets? Only that I didn’t try this sooner because I am now a believer that CBD gave my son his smile back.

I’m Going Home

I want to runaway in the worst way. I feel so stuck In a life I had not planned for. Yesterday was our last day of ABA and I cant help but feel like a bit of a lost puppy. In the last ten years I had got married, had three kids, Autism entered my life and now I have two children diagnosed with hearing loss and in hearing aides. This is not at all what I had pictured when I first set foot on my college campus. Its kind of strange having my youngest in school now I’m not really sure how to spend the time. I could work, sure, the money would be nice but ya know It’s kinda nice to close that door after getting them on the bus and just listen to the silence. Theres no yelling, no autism, no kids fighting over ipads no therapists working with my kid and taking notes of my every move.

This morning after my husband left I walked back up to bed and layed there for an hour thinking about how I wanted to spend my day. At first I thought about going to the rink to skate but then I talked myself out of it reason: its too cold. (It is fall in Michigan after all) Then, I thought about going to the community center to work out but eh not feeling like any physical exertion today so I layed stagnate until I decided to just take a shower and take it from there. As I stood in the shower just letting the water hit my back I couldn’t help but feel relief that I was able to take an uninterrupted shower and even had time to go a bit extra and shave my legs without missing any spots. (that’s huge to me) and as I was washing the conditioner out of my hair I began to think about home. Not the home like the place where I was raised but home where my dreams used to be attainable.

I thought about how much I had missed “home”.  I thought about all the promise that place held for me. It was the only time in my life that I actually felt alive. Passing through classes and college parties. And after two minutes I knew my plan. I was going home. I got dressed, put on my makeup (YES MAKEUP I FINALLY WAS GOING OUT!) packed my backpack with my laptop, my iPhone, all my chargers and my binder full of my favorite writings I have done. I loaded up my minivan and hit the highway. I couldn’t wait to get back to ME. I couldn’t wait to get back to the place that held all my dreams I have had to give up.

There it was U of M Yost ice arena. I took a deep breath and remembered the barber shop down the street that will sharpen your skates while you get your hair cut (if you are a man of course but the concept is amazing). I saw all the houses with poorly kept lawns and old cars parked on gravel driveways that were designed to be front yards and I couldn’t help but smile. This is the me I know. Simple. Inspired. Im not sure how I ended up where I am and I know there’s a reason God has placed me here but there are also so many days that I feel lost. Empty. Out of place. Its hard to stand at the sink doing dishes day after day when you are staring at your degree hanging on a wall. Its tough looking at the four walls of your home on the daily when you are a wanderer. Its tough knowing there is so much potential inside and a wealth of knowledge that remains untapped and buried under loads of laundry.

barber

I feel at times like I am standing in the center of a hurricane. due to the diagnosis of my son and my husband being farther in his education I thought it appropriate that I set down my aspirations for a masters degree to allow him to carry on further. I stayed home and worked at the local hospitals inpatient psychiatric unit and took care of the children as he finished his masters in architecture and finished the liscencing testing that involved seven tests. I changed diapers, a lot of diapers, I fought insurance companies, crying babies, meltdowns, potty training, schooling, busses for ten years before I got today. I turned myself into almost a robot for ten years to survive the monotony of what it means to be a housewife and special needs mom. and now, here I sit back to my roots and I wonder just who am I now. And I cant help but say for the first time in ten years I am me.

I thought I was okay letting the masters go but it keeps bubbling up inside of me. I tried to convince me that the kids would be enough and trust me guys they are beautiful they are my everything but I have a dream to chase. I just want to be a real legit writer. This dream is becoming some sort of an obsession. BUT, I don’t know how. Sure, I published one article in a magazine which was a huge feat for me but I never submitted another one for publication. I want bigger. I want my name in print with a cover and an ISBN. But there is some sort of fear inside of me that keeps stopping me.

Maybe, its that now, when I go into public I feel so disconnected. Maybe, its that in the past ten years of being in the home technology has advanced to the point of putting kiosks in fast food restaurants and I cant understand why anyone would use one of those things when there is a person right in front of you that can punch your order in for you.

Today, as I stood in the group of college students waiting for my coffee at starbucks I couldn’t believe how quiet it was with so many people in one place until I stopped and looked around. there were probably thirty people standing there all holding phones scrolling. I felt sad. When I lived here it wasn’t like that. we would play with eachother and tease the baristas as they made our drinks. Its strange now, the way the world is, its like we are creating our own four walls with our phones. Even as I write this I am surrounded by a plethora of people and yet I’m staring at this computer screen with my headphones in and on at a volume where I cant here anything going on around me. I cant help but wonder and feel sad at what we are missing because of technology.

One of the great things about Ann Arbor is that they still have book shops. yeah, BOOKSHOPS! Remember those? there’s one right down the street from here that I used to frequent its a quaint little used bookshop and its cool because you never know what will be in that shop from day to day. I used to spend hours here just carousing and laughing at the inappropriate self help books. ya know, like that kama sutra and junk I know I was immature but hey we were smiling.

Ann Arbor was where I got my start. It was where I had my first tinge of independence. I worked full time at a local pet shop and lived in an apartment with three other girls (yea 4 girls in a two bedroom apartment… just imagine the drama) my roommate worked at the coffee shop next door and we had an agreement I would get her cat food if she supplied me with soup and that was the best agreement ever. I miss those simplistic days of scrounging under my car seats to find $1.06 so I could get some mcdonlds off the dollar menu. Everyday was a challenge and adventure. It was simple but to me it was so fulfilling. I never did need much.

I don’t know. Maybe its the responsibility that’s getting me. Maybe its that big house that I have to keep clean, maybe its the autism but I cant help but think that its something more. Maybe I’m meant for more. I want to write. I want to get back to dreaming. I want to do it all DESPITE the autism. Or maybe, I’m meant to do it BECAUSE of the autism. I gatta make a change. There’s so much more in my head than what I have been doing and I cant hold it down much longer. Its time to chase that dream. Time to write that book. But how? I don’t even know how to start. Do I even have the talent? Lord knows I have the passion. I need direction and yet I have no idea who to ask or where to go from here.img_5005

 

 

 

Today’s Lesson in Cleaning- It’s not about you its the tools you use!

I’m starting to learn a very important lesson in life that if you have the right tools for any given job then the job becomes easier and less time consuming freeing one up from both frustration, lack of time efficiency and unnecessary exhaustion. Sounds simple right? Like I should have know this before today. Common knowledge right? Well, not really.

Last week as I was trying to manipulate my big bissell vacuum up the stairs while holding the hand held wand that comes with it I couldn’t help but complain in my head, “aargh, this is so heavy! And I have to stop halfway to plug it back in! There has to be another way!” We’ll that night as i layed in bed settling in for yet another sleepless night of random thoughts I remembered this earlier conversation i had had with myself and remembered the handheld vacuum my mom had when we were growing up. I began researching on the inter and guess what I found! A Ryobi hand held vacuum that uses rechargeable batteries! Not only that but we already have said batteries and the charger as my husband uses this for his power tools. I got so excited that I woke him up and said excitedly ‘This! Look! I want this!” My husband shocked that I would ask for something like a vacuum cleaner said “okay we can look into it tomorrow”. Well let me tell you a week later and today i picked it up. I also picked up a window squeegee (like the ones that you find at the gas station for your car) and and some professional like window cleaner (you know like the one you dilute in water like the professionals use) and i flew home.

Knowing I had to go and get my son in about an hour for therapy  rushed to fill the bucket with the cleaner and screwed on the squeegee head. I grabbed a plastic chair and ran out side with said items anxious with anticipation. I began washing the outside windows that for the better part of the summer were so dirty even though i had spent hours tying to get them clean. I dunked the squeegee in the solution and as i soaped the window I couldn’t help but notice how much easier this was already. Long story short twenty minutes later and all my windows were sparkling clean and I wasn’t tired or frustrated and i was ready to tackle the next task.

I unwrapped the vacuum (discarding the directions because we all know “i got this right?”). Inserted the battery and turned it on. I ran to the stairs immediately and within ten minutes the stairs were vacuumed and I still wasn’t tired. I also still had time to spare! Not only were the tasks that used to take me hours with less than acceptable results done but they had never looked better!

Now, maybe I’m a simpleton. Maybe this story is leaving you bored wondering “hey, what’s the big deal?”  We’ll, here’s the big deal. The more housework i get done in less the time the more time i have to spend time with my family not to mention, I am finally figuring out how everyone else seems so calm and rested as they live in spotless houses. Maybe, its time that i stop just looking at the house of my spotless friends, maybe instead should be Asking to see inside the cleaning closet at the tools they are using.

Okay, lets get metaphorical for a moment. Let’s get deep. What life lessons can we learn from this?

First, instead of struggling with the same things you have been struggling with in life maybe it makes sense to step back and have that conversation with someone you know to be excelling at that “task”. It could be anything, like organizing, time management, emotional intelligence, child “management” etc… Because if you are still running around in circles three years from now despite fighting the battle that you see others have conquered it only makes sense to ask them their battle plan.

Second, asking for help or guidance on an issue helps to strengthen relationships which is not only good for your health but can also be a good networking tool for things that may pop up in life. Not only job opportunities but the more people in your networking circle the more connections to more tools you may possibly need in the future.

Third, If something is frustrating you or hindering you from what you desire to do, be, to see (in the case of a more clean house) stop. Just Stop. Stop fighting it and research how to get those things done. I get it, after so long of battling the same battles it sometimes takes us to brink of our anxious selves to figure it out. I’m not sure if its society that teaches us to keep battling in silence or just our internal anxieties of what others will think if we show our weaknessness, maybe its both, but my hockey coach always used to say “ignoring your weaknesses only makes them more profound, the more you use your weaknesses the more a chance you weakness can become your strength”. N

Okay so i get it. My metaphore of cleaning the house may be a bit far fetched and simple but its what i got for ya today. But today, as i look out past my overgrown bushes under my front window at my neighbors perfect landscaping I wont be looking through old water spots and dirt. My view will be perfect, and i will be rested and tomorrow, maybe ill march on over and ask to see in her shed. Maybe then I can have perfect landscaping. The grass doesn’t always have to look greener on one side sometimes if you trade in that old lawnmower for a self propelled one yours can look just as nice.

That’s todays thought of the day and I’m sticking to it! Have a great day y’all and take heart. Whatever your struggles may be sometimes its not what you are doing but the tools you are using. Don’t give up! And remember, ITS THE LITTLE THINGS THAT MAKE ALL THE DIFFERENCE!

A Steadfast Promise- When giving up is not an option

I know that we are writing a story. I know that in every good story there are plot twists and antagonists. I know that there is going to be mystery but what if that story is constant stuggle? Is there a point in the comings and goings of characters where the story loses its vigor? As I travel my way through watching a show from season to season there are episodes that i have to push to get through because of the boredom but then it picks back up a few episodes later and i say “ahhhh so that’s where they were going with that”. Maybe that’s what life is like.

As i watch him struggle in some areas like urinary accidents that weren’t a problem a few months prior while watching him excel in other areas like communication and understanding I cant help but sit perplexed and stagnated. I want to find out what changed to make his potty accidents increase but at the same time I don’t want to change anything because of his increase of reciprocal communication. I sit in a state of constant anxiety because i cant seem to figure it out. Not to mention our therapist center we had been working with for over a year decided they could not contend with the behavioral issues at hand and have given us a thirty day window to secure services with another company (which is next to impossible after you jump through the insurance and evaluation hoops not to mention the wait lists and team formations). SO i will be left out in the open to figure all of this out on my own once again.

Yesterday after a small medical procedure I had done I awoke from anesthesia and my first words were “why wont anyone help him” as I sobbed. The nurses just stood in the room unsure of what to say knowing that i was not yet fully in the world with them. As i came to a bit more i began to apologize and as I cleared more i went silent and began joking with them something completely off topic. But as i sit back now and think about it I remember dreaming about it while i was “under”. It’s all I ever think about.  Sometimes as I smile with people in conversation I cant help but realize that the smile is not really a smile at all its a cringe. It’s a pained expression hidden behind giggles and laughs.

Yesterday, after my procedure i went home and I couldn’t rest. Still sore and groggy I knew there was no rest in store. When you have a child with special needs there are no sick days. He walked through the door and I took him to the bathroom and gathered my things and ordered Chinese (knowing I couldn’t cook in my state) I drove us out to the Chinese restaurant and we walked in as he clutched my phone in his hand. I set him down at a table as he flapped and yelled happily as he watched the PBS Kids jingle for the seven millionth time and couldn’t help but see the woman waiting by the wall staring at him. I got angry. I usually don’t get angry. As I walked still a bit slunched over from the pain i paid for the food, walked over, grabbed aiden and began to lead him out the door when I heard her lean over and tell the person next to her that “he must be retarded”. Now, I realize that she is older and that is the school of thought that they held and just continued walking as the tears built up but never fell. I got us into the car put the food on the floor so it wouldn’t fall off the seat in transit and turned to aiden for the “1…2…3 give it to me” talk but he resisted giving me the phone. Knowing that David was going out of state the next day and would need the left over data for his trip i knew this was a battle i was going to have to win. So i slithered out of the drivers seat wincing with every movement and grabbed it out of his hands as he looked at me angerly.

We arrived home before my other children’s bus was set to arrive so i sat and ate and put his favorite noodles on his plate and tried to get him to sit and eat but this battle would not be had today. As he ran back and forth grabbing handfuls and dropping food as he ran i just sat there watching the mess I would have to clean later grow but i was in no condition to stop it. I was empty both physically and emotionally. I stepped into the back yard to take a breath of fresh air knowing that this would be one of the last days that the weather would be good before the snow hit. But the moment i stepped outside i looked over and saw that he had taken everything not secured to something in our second story bedroom and threw it out the window. I just sighed and began to pick things up calling Caleb (Aiden’s younger brother) to help me to pick things up as I praised him and thanked him for his help. Another scentsy warmer broken I thought to myself as I picked up the pieces defeated.

14784FBB-F4A2-4583-B537-8442EE72CFA6

By the time my husband got home I was depleted, void of any energy and if I’m honest hope. He told me to go rest but then he was tired too. We both layed down and before i knew it he was snoring and i was angry. I got up to check on aiden and he was sitting in his sensory swing in his room with the ipad and all I saw was the puddle underneath him. I lost it. I got mad at my husband, I got mad at aiden, I got mad at Autism and I got mad at myself for not maintaining control. I began to yell at my husband “YOU KNOW I HAD SURGERY TODAY RIGHT?! RIGHT?!” And he grew on the defensive and all hell broke loose. There were hurtful words passed, there was anger hurled and uncontrolled frustrations at the whole of things.

As I put aiden to bed I couldn’t help but feel that I had failed. This seems to be the most of my feelings as of late. I feel like I’m failing everyone including myself despite my best efforts. I feel like everything is swirling all around me and nothing makes any sense. My brain feels like a puddle of mush as I try to figure out this thing called autism that really makes no sense at all.

As I grasp at straws trying to figure this out and the people I had put in place to help us continue to bail as things get harder and harder I cant help but wonder when I will have to say I can’t do this anymore. IF even the professionals who are only here six hours a week are bailing who am I to think that I can do it 24/7? But then I think about the whole of things and what waits for him out there. If I give up then he has NO ONE. If I give up then what am I teaching my other children?  I feel like giving up isnt an option. So then, how do I navigate this? How do I plan for the rest of MY life? I know I need to start with forgiving myself. I need to be more gentile with myself when I lose myself in anger or grief. Sometimes I need to let myself sit and mourn its part of it.  I need to stop comparing myself to the other moms who adorn perfect makeup everyday and just be content in my yoga pants and hoodies. I need to stop striving for perfection and instead strive to be the best I can be. I need to stop hiding the fact that I’m tired. I need to stop hiding the fact that apart from my years of inpatient and my degree in psychology I have absolutely no clue what I’m doing. I do know that I’m doing my best. But the hardest part is that I am seeing that even my best isn’t good enough in this case.

Everyone tells me to “take care of yourself” or “you need time for you” truth is I don’t even know who I am anymore let alone what I would do with “free time”. I don’t even know what this world is like anymore. Autism has taken over my life in a way that cant be described. I cant make sense of anything and the darkness of people has been shown to me in a way that I cant seem to let my guard down much. I’m so angry. So disillusioned. It’s hard to strive to see the light at the end of the tunnel when it seems that everyone on our journey continues to bail when things get tough. But me, I’m still standing here right at his side. I’m watching a boy who doesn’t know he needs help and I’m trying to save him as the waves come crashing in harder and harder. And even though there are bad days and trials when this journey began I promised him and myself that I would remain steadfast in my promise to keep him home and protect him and this is still a promise I’m holding to. Even if its not always graceful this is my burden to bare and I have my moments of questioning my resolution to my promise I know deep down giving up it not an option and that is what keeps me going day after day. And this will always be Life as we know it. And that’s our story. A story based on Love that knows now bounds even when the world doesn’t understand the sacrifices made I will continue on knowing this is our story to write. Not the worlds.

CEC8B74D-9D3D-4D4F-A13B-4AB1251977B0

Momma Says, “You’re Ganna Miss This”

Have you ever taken a step back to just think about where it all started? Have you ever just wanted to sit down and write your story? I have pondered writing my story for so long and I suppose that one day I will but there is a certain fear in it. There is a certain distance in the words from the actual story. Is there really an adequate way to describe how I became the self that I am at this moment?

Ten years ago, this day he was placed in my arms and I had no clue where this child was going to take me. On this day ten years ago there was no autism and he was being taken away from me to go get an ultrasound of his abdomen because of the cysts in his left kidney. We were terrified thinking that he might only have one kidney despite the doctors words that, “so many people are walking around with one kidney and don’t even know it”. Little did we know that this would be the least of our worries.

It took me over a half hour to dress him. I thought that I would break him somehow as this is the first baby I had ever even diapered. I took such care and thought that he was the most beautiful baby in the world. As we strapped his tiny body into the baby carrier and left the hospital the world seemed so different. Everything seemed so fresh, so new. The next few weeks that followed involved a lot of recovery time from the C-section and exhaustion that follows having a new baby. Then two weeks after his birth my husband called saying, “don’t freak out, we are going to be okay. are you sitting down”. “yes” i said fearfully. “I just got laid off” he said.(it was the fall of the economy in 2008) I sat there holding this new baby in my arms, still unable to walk straight from the c section incision, exhausted, boobs still hurting knowing my recovery time would be cut short. Just three weeks later I walked into work on the psychiatric unit working full time while my husband stayed home with the baby fervently looking for a new job.

As I walked the hallway doing fifteen minute rounds and helping patients with their daily living actives like dressing themselves or showering i was still sore. I was still in pain and my emotions were everywhere It was the hardest three months of my life. But I survived it. I missed my baby.

After all the ct scans with contrast, ultrasounds and multiple trips to the Urologist out at children’s hospital in Detroit it was deemed that his cystic kidney was in fact alright and had died off. It would eventually be reabsorbed into the body and the other kidney had increased slightly in size as it picked up some of the function of the lost kidney therefore this was no longer anything that needed to me monitored.

Still a newborn i told my mom, “I don’t know when he is hungry he never cries”. so one day, i waited him out. One hour… two hours… three hours… four hours… still no crying… five hours… six hours… then seven… then finally as i stood there looking at him in his swing i knew something was up. I grabbed the breast milk from the freezer and fed him and he ate an entire bottle. That’s when I began to suspect that something was different.

Despite this I watched him grow and change and evolve. he would coo, smile and cuddle. Even to the point of calling things by name. he would say mommy, daddy, “ight”(for light). but still there were things. Like he would watch Nemo on repeat for hours transfixed on the colors. he only liked toys that had buttons and eventually, his words fell silent.

I was seven months pregnant for baby number two when I would get a name for it. He wouldn’t point at things and when I pointed at an object for him to look at he wouldn’t look. He seamed deaf when I would call his name. I walked out of that office with a diagnosis of Autism in my hand and the words even left MY lips. The ride home was silent as i would look in the rear view mirror at this perfect boy.

A week after his diagnosis Caleb was born a month early which meant a nicu stay and another C section recovery in the midst of the news.  the next 6 years to follow would be the hardest years of my life. It was a colickey newborn that cried incessantly, insurance battles, phone calls, less than adequate therapies coupled with the basic uncertainties of parenthood, work, anger, love and everything inbetween. All this, with no help. We had my mom thankfully but she was often watching Aiden while I worked and David had branched out and found a job over an hour away from our home.  Despite him being an architect and me being in mental health we were living in a trailer just to make ends meet.

But you know, looking back now these were simpler times. I remember being excited every night at 630 when david would get home and we would sit down together with a bottle of wine and watch the kids play in the living room while we watched america’s got talent together. I love the nights at home. I loved the evenings where i would close my broken mini blinds that really weren’t functional at all and block out the trailer next to us and pretend there was no world out there. i once closed the blinds and joked to my mom “i like my privacy” as we both peered out the large hole where the blinds had broken off at the neighbors illuminated windows across the street and we laughed and laughed. (Those blinds remained until we moved out). Those were my happiest times. I know it sounds strange to some but We live in a house now and ya know, there are some days that i still drive past that silly little trailer and miss it. I miss the sound of the train tracks just beyond the field right past our house. I would often sit at the dining room table with a coffee as i watched the trains go by and played candy crush for hours (long before social media took over the world) as the babies would sleep. I would often stop mowing the lawn to engage in conversation with the drunk next door about landscaping and the boy he was raising who eventually would become like a son to me as i often fed him and helped him with his homework. (Frank from shameless always reminds me of him). Its funny how you miss those things. I love my house now, its great, and our neighbors are great but 1600 square feet is a lot to clean and the therapists in and out everyday don’t leave a lot of room for down time. Plus with two floors its rare to have the family together at one time. and the obsessive autistic behaviors my son displays often has him changing the channel or turning the tv off mid show leaving all of us angry and the other children frustrated at Aiden as Aiden scurrys off to isolate himself from the rest of us i am left upset and torn. In the trailer this would have never happened. There was no room for isolation. It was simpler.

I remember praying incessantly for the therapies to start and for insurance to cover all the services he needed and now that they are here and we have been up and running for three years i cant help but be thankful but also a bit overwhelmed. Now, instead of wishing for them to be here sometimes i wish for them to just go away so i can have some time with my boy. I guess that phrase, “two sides to every coin” really rings true.

Now, I have younger moms coming to me asking for advice on apps to help with writing or letters. Which is a new development with my other typical children now entering into elementary school. And i cant help but think back to the scared momma i was. Just ten years ago, I didn’t even know how to dress a baby, clean a house, do laundry or even how to be content being alone. I thought life was so hard. But now, looking back I hear those words my mom used to tell me when i tried to rush my kids getting past that toddler phase, “You’re ganna miss this” she would always say and i never believed her. But today, I’m ganna say it one more time as I’ve been saying it more and more “Momma was right.”

I guess this is just a part of my story. But its a precious one. If i were to name it as a chapter in a book i would name it “the Best of the worst time”. Because to date, those times that i thought things were so hard and all the anxiety I battled over living in a trailer and what people thought about it I kinda miss that place. Those days are over now, my alcoholic friend passed away last summer I heard and the boy I “adopted” as my own is now in high school and “too cool” to hang out with an old lady like me. I guess you could say I did a small part in raising him. We have lost tough but i think of him daily. And as I look at my Aiden and my other two babies and where i am in life i cant help but feel thankful for the last ten years. With all of its ups and downs the things i have learned and the growth i have had is invaluable. and the biggest lesson i have learned is the lesson of family. Its about setting down the work and loving the people around you. Even if you find yourself sitting in an unfolded pile of laundry. The laundry will always be there but your child won’t. one day they will be heading to a friends house everyday after school and you wont see them until bed time and you will have to beg them to stay home and hang out with their momma. There will be a day that my daughter wont miss the bus because she wont get out of the truck because she “doesn’t want to see [her] friends today [she] wants to see them tomorrow”. Cherish it even when its hard. because like Momma says, “you’re ganna miss this”.

**This Post is dedicated to the boy that ten years ago on this day made me a momma and the best version of myself I could ever be. Aiden you are my world and momma loves  you forever and always. Happy birthday even if you may not know what a birthday is. Today we celebrate you.**

 

aiden cake

 

 

 

Advice to The Newly Diagnosed Autism Parent

Maybe it’s just me but I’m so tired of reading clinical accounts of autism How tos… You know, those books written by professionals telling you what to do with your child when they act a certain way. Id rather talk to someone in the trenches with me. Id rather read real life accounts about kids on roofs and poop smeared on walls. Its more real.

It seems that every professional book starts the same way. “What is Autism?” is usually within the first line and the topic of the first chapter. Often including a picture of the DSM criteria for diagnosis. To me, its all hogwash. And im sure that most seasoned autism parents at some point have said, “I can spot a spectrum kid from a mile away. I don’t need a doctor to tell me if a child is autistic”. That’s the part that gets a bit sketchy. Its tough as a now seasoned autism parent when you meet someone for a playdate and notice all the tell tale signs in their kid but you don’t have the heart to say anything and so you sit silently waiting for the news to come out. I have had to play this waiting game about three times so far and when the parent comes to me after a tough pediatrician visit or their first evaluation with fear in their voice I already know what they are going to say. I already know the struggles they will face and that is not something a “professional” can prepare you for.

A friend of mines son was just diagnosed with autism about two weeks ago and she is beginning the first phase of the process of obtaining services.  She had posted on her facebook this afternoon that she can’t seem to get in to get a formal evaluation until at least February (6 months from now) Another person commented saying, “can’t you complain to the doctor and get things pushed through?” I read this and shook my head knowing that the whole autism world is very different than most other medicalized worlds out there. I took a deep breath and began typing on my phone, “Unfortunately, that will make no difference in this case and won’t help. There are wait lists everywhere you turn and really 6 months isn’t that bad. Everyone is waiting (even us. we are currently number 223 for physical therapy and number 111 for occupational therapy which comes to about, at best, 5 months wait). It took us 5 years to get ABA. However there are things you can do in the mean time… Call me.”

It’s scary at the beginning. You now have this name for what you knew was a bit odd and you have a “treatment plan” and all the professionals are telling you “early intervention is key” but at the same time all the clinicians are saying, “you have to wait” and all the while you are waiting you are watching your child fall farther and farther behind as your desperation grows. Its like a slow torture. Its the idea of knowing there is help out there and you just can’t seem to obtain it and at times you feel like a failure even though you have done all the research, made all the phone calls, did all the begging and have the filled up notebooks full of phone numbers and obscure notes and scribbles to prove it. You flip through your notebooks as if you have missed something somewhere only to find you aren’t missing anything, in fact what you are finding is a brick wall and no way to climb it.

Fast foward a year and your services are up and running but you find that the occupational therapist is brand new and doesn’t have any answers, the speech therapist, after 12 sessions, just continues blowing bubbles and saying “Pop!” while staring at this unresponsive three year old (no joke this is a real life example experienced by me)  still waiting for him to respond. You realize that the therapies you had waited for for so long are less than par and so your search begins with yet another wait list. Only this time, you have some more insight into what speech should be and you take a more concerted effort into your research of clinicians. After a while, you learn to leave when therapy gets, for lack of better terms, “stupid”. You realize the stagnation much sooner and you make the move… But not before consulting the other autism parents you have met through your prior therapies and programs. Its these “waiting room friends” that eventually become your network. (Word of advice, don’t ever just sit in a waiting room. talk to each other and ask questions I get some of the greatest references for therapies in those waiting rooms).

Which brings me to my next point, ABA. AHHHHHH ABA. Applied behavioral analysis… that one therapy that everyone says is the golden ticket. I bought into this school of thought. I remember laying in bed night after night as I waited for services thinking, “If he could just get ABA he would get better. He could be the next “I used to be autistic but now I’m an engineer” story! Well, I’m ganna be honest here, Aba did teach him some great things but it has not even come close to my expectations. Sure, because of ABA he has a bit more speech. but we are three years in and we have to script everything. For instance, his birthday is next week. so guess what? that question and answer we taught him has to be retrained. you know… “Aiden how old are you?” “nine.” that exchange will take about a month to fix. So please please please don’t ever think that ABA will “make it all better” it can only help with the basics the rest has to come from experience. And those of us working with the more severe end of the spectrum there will be a day when you realize that a tech cancelling a session is no longer a reason to get angry because you will come to see therapy through a different lense. As i said to our tech today when she apologized for cancelling another session “eh I’m not mad you are cancelling autism is what it is and one cancelled ABA session isn’t going to change that.” The therapist looked at me perplexed but i didn’t elaborate further. And those of you with little ones just starting out I’m not trying to deter you in your hopes. Keep hoping but remember to keep your feet on the ground as well.

Lastly, Stay away from clinical books. and for goodness sake please stop it with the How to lists. you know the ones, “how to potty train your autistic child” “How to teach your child with autism _______” “10 steps to back to school success” blah blah blah. Every kid is different. and most of those “theories” don’t work except in the highest of functioning autistic individuals. Wanna know what to do? Ask the parent of an autistic child older than yours. Trust me, they have tried it all. They have felt it all. They have done it all and let me tell you, the way that they are going to tell you with often be so off the wall you will look at them with that “are you kidding me” look in your eye and we will smile back at you and say, “nope not kidding just try it”.  take a deep breath and Godspeed my fellow autism warriors.