Aiden Update April 2021

I can still hear the doctors words the day he was diagnosed back in 2010 “he may never speak”. I heard those words when he was two and I heard them echo in my mind yesterday as I listened to him sing an entire song at the age of twelve. I hear those doctors words when aiden says “Papa house? Yes?” I hear those words when I hear him say “sook (school) tomorrow?” or my current favorite “Aiden house? Yes”. He has come such a long way in the past year. Despite the sleepless nights with his schedule being backwards due to the ever changing school schedule with covid and all I have seen his eyes become brighter and his interactions become more functional.

An example of his increased functionality is he is more able to follow directions and carry them through to completion. What do I mean? The other day aiden came out of his room with no pants on and I quickly said “Aiden, go put your pants on.” as quickly as I asked he went into his room i figured he would get distracted and would require more prompting but two minutes later he rounded the corner into the dining room with his pants on backwards and a smile on his face as if to say “I did it mom!” I was so proud.

I see improvements in his execuitive functioning as well. The other day when it was time for school I got him dressed, helped him to put his orthotics on and struggled to get his shoes over them (they never fit its always a muscle game to get them on) and as soon as this task was done he said “backpack” and ran to his room to get his backpack. I figured he would fill it with whatever DVDs he is into now (dvds are his obsession) and his portable dvd player. While he did pack these things he also packed a binder with his school work in it and said “sook”. I stood there with my jaw open.

Another thing I have noticed is that he thinks things through a bit more. For instance, when he was younger if he was eating something out of a wrapper say… popcorn out of the bag… when he was done he would just throw the bag on the floor and keep right on going. Now, he has begun throwing the wrappers in the trash withoutbeing asked. Just recently I have noticed that Aiden helps me to clean even when I don’t ask. The other day, he picked up a random cup that had been left on the table and threw it in the sink. Sounds small to some but to me this was huge. Not only does it show that he is aware that the cup is there and needs to but picked up but it also shows that he is paying attention the behaviors of those around him and is adjusting his behavior accordingly.

Puberty is in full swing with his 13th birthday fast approaching. This has proven to be quite a challenge mostly just trying to keep pants on the kid and when he does keep his pants on keeping his hands out of them. Par for the course I suppose. Last week I helped him to shave for the first time. What I thought was going to be a huge hurdle turned out to be nothing more than a normal life milestone. Unlike hair cuts and toenail clipping this was as easy as it should be in a typical situation.

Its been nice having a bit of a break from ABA therapy. The best part is watching him still grow and progress while not having a therapist in his face. Its kind of neat to watch him find his own way, his own interests and his own problem solving. Don’t get me wrong, he will never be normal by the worlds standards but my goal of making him someone that caregivers would like to care for is truly coming to fruition. I know he will never live independently, that’s just the fact of the matter for him but that does not mean that he can’t learn to be as independent as possible.

On the caregiving side, I’m pretty exhausted with him not sleeping at night. I spend my life wondering when I will sleep again and gageing when he should fall asleep or when I should wake him up from a nap. Trying to care-give someone else when your tank is empty is tough but I try to find little pockets of time in the day to relax. The isolation is still tough but I am planning a four day trip to Boston in June which I am so very exited for. Having something to look forward to really does a lot for the psyche.

I have begun starting to think about the transition years and what it will be like when my parents are no longer able to help take care of Aiden. I am starting to organize my thoughts so I can prepare for applications of guardianship, state help if it ever gets to a point where I can no longer work and take care of him. I wish I could get to that point where I could stay home with him fulltime but now as a single parent I don’t know how to go about finding that. I don’t want the state taking care of him or someone who does not love him. That’s not how I see his future going he deserves more.

Anyway, that’s all for now. I guess what I have learned this past year is sometimes the doctors don’t know what they are talking about. I was also told he may never be potty trained and wouldn’t you know he is my only kiddo that doesn’t even wet the bed. I’m so proud of this boy, I’m so proud of myself and I’m proud of this journey. Giving up was never an option despite the many times I have tearfully said “I give up” those were but a moment before I collected myself and said “this is not where we are going to stay” and would go back to the drawing board to fix whatever had transpired to leave me so defeated. This journey has taught me to look past the prognosis, the “he will never” comments and look instead to the “but he can” “we can alter this to make it work. it might not look normal to everyone else but it accomplishes the same task”. What I have learned is that Its not about where you start or where you finish Its about the love you find along the way.

Not Meant For Normal

Tonight is the first time that I have thought about putting words to paper since I have moved. I have my own home now. I have made it to the other side of the hard time. I am done losing things and have begun rebuilding. I have a home, two amazing new cats, a brand new car, and three happy kids. My hair is growing back (i had lost all of it from stress and fear, no really I was bald) and just yesterday a brand new bikini came in from amazon that I plan to wear on a trip to visit my best friend in Boston this summer. Tomorrow I will book my plane tickets and I will have the most amazing thing to look forward to. The last time I saw my best friend i was crying in her arms in the middle of the kitchen begging her not to go. When I get to Boston to see her she will see a different girl. A happy girl. A girl who is getting her spark back. When I fly back she is coming back with me and she gets to stay in my home just as she had extended her home in the thick of my divorce. True friendship is an amazing thing.

My job is up and running on the psychiatric unit and what a pivotal thing it has been to be back to work. It has been an amazing blessing to be back with people who are familiar and genuinely care about me. There is one in particular that has really taken me under her wing. She brings such peace to my soul and seems to quiet my heart when she is near. She has taken me under her wing and always brings my anxiety back to God and she has just the right words to say as if she knows my heart more than I do.

I have begun to heal and to dream again. The world is becoming exciting to me again. I am finding my confidence one day at a time. Every month I pay my bills I pat myself on the back that I didn’t forget one and I smile knowing that I’m doing something I never thought that I could in a million years do.

Sure there are days and moments that I struggle. I fight loneliness the most. The nights get excruciatingly quiet but then I force myself to think about all that I have done and it helps.

The other day I heard my mostly nonverbal son singing. I stood there in the hallway listening to him sing the nursery rhymes he had taught himself and I began to cry in happiness. Its an amazing moment to hear a child sing that all the professionals told you would never speak. He is twelve now, and for the first time in a long time I see that sparkle back in his eyes that he had lost so many years ago. ABA has been on hiatus for months now due to covid and honestly I think it is the best thing that has ever happened to us. He is thriving. he is laughing, he is playing, he is speaking. the other day when he knew he was going to school he packed his backpack on his own and even grabbed his binder of work to take to school with him with no prompting. A year ago he would never have done this. I am watching him grow and his personality shine. I would be totally okay if therapy never started ever again. He is growing on his own and its amazing to watch. I am so proud of this boy. He is my world. Autism isn’t hard its the most amazing thing I have ever experienced. Its a journey that not many get to travel and I was built for this. I was never meant for normal.

My other two kiddos love our new home. I find it amazing how they say they like it at my house better. Our new home is a mobile home. its nice and all its 2,465 square feet which encompasses the kitchen i have always dreamt of and every kiddo has their own room. My room has a fireplace in it which I think is totally cool. My room has become my sanctuary which is totally what I needed. I feel like I can dream again. I feel free to make mistakes without someone pointing them out the moment I make them.

In a lot of ways I feel young again. I find myself listening to love songs again and dreaming about the boy i might meet one day. I think about the softness in his voice or how he might hold my hand. I wonder about what it would be like to have a man calm the very parts of my soul that have been broken. I realize that it might not be in the cards for me to find a man like that with autism in tow and all. Its not like I can really go out much to meet anyone but hey even if it doesn’t happen the dream doesn’t have to die. At least the dream is there and that’s priceless in and of itself.

well, I think that is all I have for tonight. Thank you for listening. I want to leave you with one last thought.. the biggest lesson I learned this year is this, No matter what is going on in life the worst thing you can lose is your ability to dream once you lose your ability to dream your spirit is lost along with it. So keep dreaming even if you think what you dream is impossible. People are watching, be the person you needed when you were struggling it makes all the difference.

I rescued this kitty and we were homeless together but now we have a home and as you can see we are both happy about our new home 🙂
My new dream kitchen and amazing red wine my friend gave me. Nothing like wine and fuzzy socks
living the dream at work hehe
.he he a black kitty to offset the white kitty my yin and Yang

What a Year, What a Lesson

Its kind of strange when you come out of an exceptionally long and hard trial. I write this while sitting in my new home as my two new cats run joyfully through the room. The brand new dishwasher is running and I can smell the aroma of the soap as it comes through the doorway to my room which adorns a fireplace. My college degree is resting on the mantle (my most prized accomplishment to date apart from my children). Its quiet. The house, my head, my heart and my soul are quiet.

My hair has grown back since the stress has waned and I’m starting to think that maybe just maybe I can do this more autonomously as I had previously anticipated. Of course no man is an island but the logistics of it all dont seem as outlandish as I had imagined.

I started back at my old job at the hospitals psychiatric unit and I can’t tell you how great that feels. Not only that, but as I sat at my laptop the other night picking out healthcare plans and dental and vision and retirement I couldn’t believe it. For a moment, I just sat back and thought to myself “I am back where I started in 2006. Im back on the psychiatric unit, I have my own benefits and my own place. I made it through”. The most amazing part of being back to work is reception I received from my coworkers and the sincere “its so great to have you back. no, really, I’m not just saying that I am so happy to see you”. What a ride its been these last 12 years.

I was cleaning out the pictures on my iPhone today and as I scrolled through the pictures of this last year I realized that what I had just been through was so much harder than I even noticed in the moment. I scrolled through pictures of air mattresses in basements, and the pictures of when all my hair fell out from stress and the sparkle that had been gone from my eyes and I just tried to hold on knowing I had three kids depending on me. I had no choice but to survive. There were days I would just sit and wonder why it was all happening to me. There were days I would have to convince myself that living at my parents on the air mattress was actually a blessing (which it really was trust me but sometimes thats hard to see in the moment). There were days I questioned if I would ever pull myself out of that dark place that I had found myself in. I had, afterall, lost everything right down to my hair. But there was something I hadn’t lost and that was hope and faith. Those were the two things that kept me going.

When I would waiver, I would jump on facebook and look at furniture that people were giving away and occasionally I would pick something up and put it in the storage unit in preparation for the new place I was hoping for.

Slowly, I began to see that I could live without him. I learned how to check my own oil and navigate my way around technology amid the pandemic with zoom meetings and the like. It took me a long while to get back to work. When I resigned from my position in applied behavioral analysis back in may (because my hair was falling out) I knew I was in no way ready to work. Besides, the court dates had begun rolling in and my doctor had written me an order to stay off. In november I finally felt ready. I, on a whim, texted my former boss and here I am today. Back to work and thriving.

I remember telling someone that “the hardest part of all of this the not knowing where I am going to land at the end of all of this. Where I will live or who I will even be. I don’t want to end up cold and bitter.” Well, now that I am here in my home I have to say, I am doing better than I have in a long long time.

My kids are happy because for the first time they all have their own rooms. My daughter, whenever anyone comes over simply must show them her room. She’s 7.

I gave Aiden the master bedroom which I plan to make into a sensory room to help sooth him. I plan to put up a swing for him and add some lighting among other things. The community we live in also has a pool that is open to its residents which is awesome because Aiden loves to swim so that gives us something to do in the summer months.

One thing I realized through this entire year was that everything I needed was somehow provided. Be it sleep, food, finances, someone to talk to it didn’t matter. Somehow it all just worked out. I learned that anxiety fixes nothing, what fixes things is patience, diligence and preparation. There was no luck in my situation. I did the work to get here. I faced the hard times to get here. I faced the immense fear to get here. I had to face it head on and trust me it wasn’t easy and it wasn’t charismatic but sometimes its not how you get there its that you get there. I am not angry about this last year and its happenstances, I’m actually a bit thankful, This last year had to happen to show me what it means to truly be thankful and not just for the good things but for all things. Had this year not happened I would not have found the parts of myself I never knew existed. You see, all my life I had seen my self as a weak person because Im a sensitive person. I would look up to strong women and think “I wish I could be like her. I wish I could do what she does. She’s so solid and strong”. But after this year I learned that being sensitive is not a weakness. And now, even if I don’t talk loud or I don’t know how to fight or be scrappy I’m just as strong as those women I admire. My strengths are just different and I am not weak or insignificant as I had previously thought. What an amazing year of growth.

P.S. You don’t know how precious hair is until you lose it. 😉 when i say I lost it I was completely bald 6 months ago so you know these pictures are recent he he My hair is growing with me.

The Drunk Guy and The Boy Next Door

I have this new male friend who never seems to make any sense. He’s a strong willed person, quite cynnical really who likes to talk politics from a viewpoint so far from mine It’s a wonder we are even friends, what with the political climate and all. Sometimes, If I’m honest I zone out thankful for the lack of pressure to keep a conversation going.

Hes quite perplexing really. He harnesses this strong voice which echoes when he speaks. I laugh inside because it almost seems as if he is yelling even when he’s not. He’s a big guy. Maybe around six feet, wide bodied like all the other former bodybuilders that have let themselves go, he has a shaved head and a round face. My mom told me the first time she met him she thought he was a skinhead or something. The first time I met him I was sitting on the porch with a friend, he looked at us and said matter of factly “you guys are sitting too close and not social distancing”. I got up and stormed in the house and angerly announced, “Mom, your neighbor is an asshole!” and that is how the friendship began.

I spent a lot of time on the porch this summer with covid shutting everything down and my complete lack of work leaving me less than funded to do much more. I would watch his truck pull in and out of the driveway each time observing this guy, whom I thought was a total jerk though my parents assured me to the contrary, trying to figure him out.

This went on for a couple of weeks until some drunk guy ended up on my porch. No really, true story. I was getting out of my truck one day in the driveway of my parents house when i reached over to get my bag of burger king from the passenger seat I looked up to get out of the car and this man was standing at the window. Scary right, I didn’t feel threatened (I have worked psychiatric for 14 years I am not stranger to the odd nature of human beings) so I slowly opened the door. “Can I use your phone to call my mom” he slurred. I could immediately tell this man was off and most assuredly drunk evidenced by the strong stench of alcohol on his breath. He was young probably early to mid 30s. Good looking and well built yet young and pitiful at the same time.

“sure” I said cautiously as I handed him my brand new iPhone. He stood there, just looking at the phone lost. I had seen this behavior before so I took the phone from him and asked, “what is your moms phone number?” he replied back with 12 numbers and I knew this was going no where. He started to say that he was hungry. I escorted him to the porch and offered him my whopper sandwich figuring I could easily go out and get another, it was apparent he was in no condition to drive or operate a stove. I went into the house and told my dad to come sit on the porch with me as I called the police station to check out the situation. We sat on the porch talking and I would learn his name is Bob (how appropriate) and he lives three doors down. He proceeded to tell me his wife left him and that I would be a perfect wife. I knew he was really messed up when he called me beautiful as this was at the point where I was almost completely bald from a medical issue. The police drove up and knew his name without me telling them. He refused to go with the police to his home, and me, knowing that he had already proposed knew just want to do to get him to comply, “if I walk with you will you go home Bob?” “yes”. So there I was walking my drunk future husband home with the police after knowing him for oh, maybe, 10 minutes.

Bob went home. the police left. not 15 minutes later I hear a knock at my door and opened it to see my drunk fiance Bob still saying he was hungry. He asked for money to get food and for fear of him trying to drive I said “Go home bob Ill bring you food”. He stumbled off the porch and swayed home as I ran to the kitchen and began to make a gourmet salami sandwich. I grabbed the sandwich and a bottle of water and walked it three houses down where I found him sitting on the porch. “Will you sit with me while I eat?” he asked. So I stood back, not knowing if he had a tendency to get aggressive and spoke to him for a while before heading back home. There would be many more visits from Bob and his level of inebriation was always increasing. There were multiple calls to police from various neighbors about him sitting on their porches uninvited. At one point I found him on my porch urinating on himself. He kept coming back over and over. Finally, my parents had to leave but were nervous to leave me home alone with this drunk guy that kept coming back. I walked outside to find them talking to the bald asshole neighbor guy and giving him my phone number! WHAT! I thought.

“We are giving him your number incase you need help with Bob” I looked at this guy and in a joking manner he said “this is your parents back door way of setting us up”. Noting that both he and I were both single at this point I found it mildly humorous as there was no way I would ever even talk to a man like him. I mean. after all, at this point I still think he’s an asshole.

“bob is on his way to your house” the boy next door texted. I looked outside and found the asshole watching the drunk guy. I walked outside to find the asshole leaning on his truck in the drive way as i yelled to bob to “GO HOME”. There would be many more visits from bob and many more texts from the asshole next door. After about the third phone call I began to realize that maybe he wasn’t an asshole after all.

After three days of visits from bob the ambulance finally took him away. The next night my mom and I were on the porch talking when the boy next door backed in his truck and began unloading his dirt bikes with his kid. Mid task I heard his booming voice say, “hey sue, I’m hungry, go make me a sandwich”. I died laughing. He said. “if you keep feeding him he will keep coming back you know, if he comes back the kitchen is closed” I said “hey man, Bob and I had a shared moment over psychosis and salamai”.

Since this time we have become close friends. He has been showing me the ropes of single life and how to navigate the many facets of finances and car repairs. Today, he and I went to test drive some new cars and as we drove we talked and he said something to me that made me proud. As hard as he is, as disconnected as he seems he said “Theres something amazing about how, even after all you have been through, you arent angry or cynnical. You are still warm and kind.” “well, i have a lot to be thankful for and I promised myself at the start of all of this I would not live life angry.” His saying this to me was validation that I had succeded in this task and I couldnt stop smiling inside.

On our way home this afternoon he said. “why don’t you look into driving a truck?” “Well, I figure I will just leave the big trucks to the men. I could never drive a truck like that its too big”. At this, he pulled over in a parking lot and began to get out of his brand new F150. “what are you doing?!” I said, “get out” he said “you are driving us home”. I climbed up in that big truck and adjusted the seat way forward, looked at him and said, “I don’t want to wreck your truck” his reply was so unexpected “I have full coverage” I looked at him perplexed and he said “look, in the last five years I have been married, cheated on, divorced, had a stroke, lost my dad and my sister had a brain tumor. I’m much older than you, if its one thing I have learned its to live life. I have full coverage now go!” I did it, I drove that huge truck as my mind swirled. He’s right. Life is meant to be lived. It was then that I realized that he isn’t an asshole, he’s hurting and so am I. We are both trying to find our way. I think in some way him taking me under his wing is not only helping me heal but its helping him too.

His name in my phone is now “the boy next door” and even though our friendship looks strange it makes sense in a nonsensical sort of way. I lost a lot of, what I thought were close friends, during my divorce this year, It feels good to be in like minded company. Someone else just as idiosyncratic in their thinking as I. I think I like this asshole. All thanks to the the drunk guy three doors down and that salami sandwich.

A bit off topic-sorry

I think the hardest part of starting over is not knowing where to begin. We separated in february after a twelve year marriage. I left the home and have been staying with my parents in their basement on an air mattress at the ripe old age of 36. The journey has been tough. I have had to learn a lot. I let everything go. The house, the marriage, the cat and everything I had been trying so hard to keep. As I write this, I own nothing but a new kitty named Angela, a broken down truck and some old bookshelves I got today from a friend. I took a break from work after getting laid off during the Covid shut down and decided it was best for me not to return until this season of life was over.

The nights are the hardest. The days fade into one another as I look in the mirror trying to figure out who I am without a marriage to nurture. My whole self was spent making breakfasts, cleaning kitchens and asking how I could help my husband. Without the static of that my mind is busy with trying to handle the silence that surrounds me.

Its 2 am. I’m sitting here alone beneath one small light listening to a soft song on repeat as the children sleep and I’m not really sure what to think. I want to think that someday I will be loved until all the pieces fit back together. That maybe someday I will be worthy of all that I dream of. But in the same thought I wonder if that is even meant for me. I wonder often if, at this point, I’m just too broken to even think that someday I might find my happy. Even if I were to find someone what would that look like with severe autism in tow. I mean dating with severe autism in tow is like trying to eat steak with a spoon. Its all fun and games until my kid flips out in a store and the guy runs.

I’m not so sure where exactly I went so wrong. It seems, at least in my little world, that everyone has everything all figured out but me. I feel so lost with really no clue how to move forward. I suppose just one day at a time will be my motto but its so hard when I stand looking in the mirror and I’m not even sure if the picture in the mirror is even me. So much for that college degree and my published articles. I have the drive and the knowledge what I lack is the opportunity.

I suppose someday Ill get there. What I do know is that I want to be married again someday. I loved being married. I just hope that next time around, if there is one the man will truly love me because at this point Im not sure ive ever been truly loved by a man.

To Lose is to Gain

Today I took a shower and actually enjoyed it. I stood there letting the water run through my short hair and down my bald spots on my scalp and focused on the clear water running down my back void of any contaminants. The empty parts didn’t bother me so much for the first time because for the first time in four months I was no longer losing. You see, for the last four months my hair has been falling out. We’re not talking hair thinning with age falling out we are talking clumps of hair in hair brushes and clogged drains falling out. I remember the first time when I realized what was happening was not normal. I had spent the night at my girlfriends apartment, took a shower and as I washed my hair I could see the hair falling. I would run my fingers though my hair with the conditioner and pull out handfulls of hair. By the time the shower was done I yelled down the hallway wrapped in a towel still dripping just staring at a tub full of hair feeling horrified. That’s when I knew I needed help.What would transpire would be a trip to the dermatologist who would run a multitude of tests which would render no real answers. “Normal” was the answer in every result. Upon entering his office the second time I sat there just looking at him as if he would have the magic pill that would make it stop. He looked at me almost knowing what was about to happen. He asked if I was under stress at which I just looked at him and said “Well, Covid, quarantine, kids out of school, a special needs child who is receiving no help, on lay off from work…” he stopped me he said, “stress”. Diagnosis Stress. I sat there as he looked at me with a gentleness in his eyes that I had needed so badly and just began to cry. I remember looking down as I tried to compose myself and seeing hair lying lifeless on my black yoga pants as if my lap was the safest place for it to land. The medical assistant stood there quiet, holding my chart frozen not sure of what to do. “I am going to offer you the worst advice ever” he said “you need to just chill out”. He looked at me with a half grin and we both laughed knowing the absurdity of that statement. He would at that point prescribed me a lotion that I would apply on all my bald and thinning spots and I would return two weeks later.That two weeks was the longest two weeks of my life. As I counted down the days to my next appointment The hair continued to fall and I began to skip more and more time between hair washes because the feeling of clumps of hair running down my legs was as bad as seaweed touching your leg when you know its coming and there is no way to avoid it. Whenever I did wash my hair I would stand there sobbing as I pulled more and more out of my head with no end in sight. It was apparent that this lotion was not working. I would get dressed and come down stairs and my mom would always ask me “how did it go” as I would just look at her and reply “it just keeps coming out”. It was in this two weeks of waiting that she would come into the bathroom as I was brushing my hair and I would say “I don’t even want to touch it”. “Here, give me the brush” she said. I’ll never forget the look on her face as she pulled the brush from just one stroke of my hair and looked at what she was holding in her hands “oh, my God!” she said in horror as she set the brush down. She just looked at me horrified. “I had no clue it was so bad!”It would be in this time that I would have my first time even considering a wig. I was almost fully bald on both sides and the back was sketchy at best. I walked into that wig shop noting immediately the perfect cut of hair wrapped in a hair tie sitting in a basket just waiting to be made into a wig for someone like me. The hairdresser keen in wigs knew ahead of time that I had previously adorned black hair because my friend had told her. I was to shy to call prior to the appointment. I had no clue what to say. so we walked into the small private room and i took off my hat and looked in the big mirror before me. She picked up a long wig and placed it on my head and I just stared in silence for a moment before I began to sob. “It looks just like my hair” I said, unable to say anything else as i looked back at my friend and noticed the tears beginning in her eyes. “Let me try the blonde wig” I said jokingly “I’ve always wondered If i could pull off the barbie look”. She placed it on my head and we all began to laugh. It was then that I knew the “barbie look” would never work for me.Appointment three is when I think the Doctor really became concerned. It was apparent now that I would not be able to go into public without a wig or some sort of head covering. It was also apparent that this lotion for my scalp was not enough. He had me sit in a chair as we spoke about something random, I don’t remember what, he said “lean forward, like this, put your face in your hands”. I didn’t question him, I knew he was the best, he had helped my brother with severe eczema and had helped my mom with skin cancer. That’s when I felt the first small pinch of a needle. He kept talking as he kept the needle moving. Pinch after pinch until, I was later told, I had been given over 25 shots of steroid in my scalp. He left the room and the medical assistant started pulling another shot with a longer needle and said “this is going to go into your hip”. I looked at her. She looked at me and smiled. It was the same medical assistant from the last two visits, she had been in on this journey with me from the very moment I walked into the office who was I to say anything. We made small chit chat as I pulled the waste band of my pants down and she cleaned the area with an alcohol pad in preparation for another more potent injection of steroid. For a moment its as if the world paused and I flashed back to the days when we would inject patients in the same manner with antipsychotics when they lost control. It was ironically metaphorical really, they lost control and I was losing hair. Poke and done. I was sent on my way with a bleeding head, a sore toosh, a prescription for a medicated steroid shampoo, another appointment in three weeks and hope.After about a week of using the shampoo daily, which required me to lather it on my dry scalp, leave it on for fifteen minutes then rinse it out, I began to notice less and less hair in the drain. At first, I chalked it up to having less hair, and would tell myself not to get too excited because percentage wise was I really losing less? During the day, I was training myself with my new wig and slowly getting used to caring for it and having something foreign on my head. Sometimes, I would get brave and I would sit on the porch but the moment I saw anyone pass by I would bolt into the house to hide. I didn’t want anyone to see. I felt like I looked sick despite a clean bill of health. I continued the shampoo and would have my mom look at my bald scalp almost daily in hopes that something miraculous was happening. Everyday went like this, Medical shampoo with no fragrance, intense looks with a magnifying glass, lots of prayers that sometimes, I’ll admit, were more pleading in nature than prayerful, wigs, hats and tears. I began to look at women with long hair longingly as if they were some greater creature than I. My self confidence was waning.But, Slowly, I began to notice less and less hair in the drain and on my hands. Then, I saw what I call “baby hairs” popping up in various places and I couldn’t help but begin to get excited. I continued on. Today, appointment four, I had a different medical assistant which made me feel vulnerable in some way. She was nice enough though she called me Kristen a few times which I didn’t feel a need correct her. The other medical assistant popped her head in and said “HEY! I saw your name and I had to come see you! How are you?!” “Well, I’m still mostly bald on the sides but i have a lot coming back on top!” I said smiling as she was pulled away by other patients and responsibilities. Today, I got seventy four shots in my head and another in my other hip. As the doctor exited the room I was still sitting in the chair with my head resting in my hands posed as I was the first time I had received this treatment and I felt his hand rub my back softly yet encouragingly. He never said goodbye, he didn’t need to.Tonight I took a shower, I cheated and used cheap green apple shampoo and nothing came out. There was no hair in my hands, none ran down my legs and there was none in the drain. I stood there just letting the water run as I breathed in the cheap fragrance so deep. I stood in the mirror and picked up the big round brush my mom had used that first day she realized the extent of my issue and ran it through my hair stroke after stroke and the brush remained clean. I smiled and just kept brushing my cool wet hair that felt so good on all the places the needle had kissed my head. It had been months before I could brush my hair without fear. I tilted my head and leaned in closer to the mirror to inspect where all my hair was beginning to grow back and felt like I was starting to get my life back however slow the process. You know what they say, all the best things in life take time.What a journey this has been, Its been a journey of loss and of finding the vulnerable parts of myself that I never knew existed. I learned a lot about people and the power of friendship. I learned about adapting, change and hope. I learned about perseverance and whats really important in life. I learned a lot about what it means to embark on a personal journey that no one will ever fully understand until they are traveling it. I have another appointment in two weeks and I hope that I will be able to show them some good progress even if it isn’t anymore hair, the progress I have made in my overall outlook on it all has been exponential and what I have gained is far more than what I have lost. I hope that one day I can finish this story but for now all I can say is that in life all we have is hope and love without those things we have no solid base when things fall.

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.

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.