I have inner struggles on a daily basis. When I see a little boy getting his hair cut without any issues. And yet I know how the simple sound of the clippers makes my son scream in agony.
When I hear moms talking about the Halloween costumes their kids want to wear, and yet my son doesn’t understand the concept of dressing up.
When I hear moms talking to each other about the Santa list their kids made, and the only thing my son’s current fixated with are stop signs.
When moms don’t know my son is nonverbal and they ask me if he likes his teacher.
When I hear parents arrange playdates with each other, and my son doesn’t have a single friend.
When the deadline is coming up to RSVP for the annual company picnic and my co-workers ask me if I’m going. And I struggle in how to explain that my son can’t handle the lights and noise of an amusement park.
When parents are arranging schedules for little league games and practices and yet we are completely booked with daily therapies.
When we are asked if we attend any baseball games, to support our city team. And something so simple as cheering for our team is something inconceivable with my son.
When I see pictures of my friend’s kids receiving awards. Yet my son’s teacher is still telling me that he’s fixated with the green footstep in the school’s hallway tile, and this creates a struggle for him to transition to another class.
When my son gets so fustrated for his lack of communication that sometimes he gets physical and tries to hit us or bite us because of how deep his desperation is.
When we hear of children being sexually abused and we have no way of warning my son of inappropriate behaviors. And how can he tell us if it ever happens.
When I see bruises on him. I wish with all my soul that he could tell me if someone did this to him. He’s a very active little boy. I know bruises on his front legs are typical. And yet I wish I knew with certainty where they came from.
Our autism life is so different than most typical households. And yet many times I crave being exactly that, typical. Right now the monkey has been crying for the past thirty minutes because he can’t seem to put his socks perfectly. (Yes, his latest fixation are his socks).
And my mind fights with my own thoughts. There are so many parents that would love to have their kids alive and healthy, so why do I pity myself when my son is alive? He is healthy and he’s loved.
And yet I wish for more. And this creates such a strong guilt inside my heart.
During the day, I can distract myself from my fears. But at night, when it’s harder to get away from my thoughts, the panick attacks are so common. The uncertainty of my son’s future bring the sleepless nights and they terrorize me. The question of “What’s going to happen when I’m gone?” pounds inside my soul.
And during these times where I feel I’m falling inside an empty whole with no end, I push thru the fear of the unknown and fight it with thoughts of beauty.
Thoughts like last week, I happened to be home when the school bus was dropping off my son. My dad waits outside for the bus to arrive. He worries of not hearing the bus that he doesn’t like to be inside. And on this particular day, my daughter and I happened to be home. I didn’t realize my daughter was looking from her bedroom window and I was watching from the living room. As the bus stopped, my son ran towards my dad’s arms. As my dad is carrying my son, they, along with the bus driver walked to the other side of the bus towards the stop sign. And they were both talking to my son making him smile, showing him the lights of the stop sign. And as the bus is leaving, the bus monitor and the driver wave goodbye to my dad and my son. My dad is holding my son’s hand as they watch the bus leave.
My daughter comes downstairs and tells me what a beautiful scene. And I agree.
I remind myself that I have to learn that I cannot worry about the unknown. And that these are the moments that I need to hold on to. And I treasure these moments because they are what will help me to face another day. I know I cannot control the struggles, but I can control how I face them.
Monkeynism AKA Autism 
Cried when I read your words… Wish that I could meet your son… I dunno’.. Wish I could you some relief.. But know that is nothing within’ my power to give to anyone… But I did survive,, Things did change.. Slowly! It takes what it takes, for us to discover, to learn, to find that “Aha!” Moment.. And “Know Something!”
I did learn to be able to communicate. “Tricks” to make people be “More real” to me… Like “solid”, so that I could really “feel” them and see them around me.. I always kind of knew that people were around me.. Even when they thought I wasn’t registering them.. I would hear their words in my mind, sometime later.. I used to wonder about what they meant sometimes.. You know? At night.. In some institutions bed… 61 years old now? And its just been a couple of weeks ago that that “MAIN OBSESSION” finally ended.. Everything in my life since forever was always centered around this one single “driving force”. And I do mean every single little thing in life.. But it ended! That “programming”.. All of the “intensity”, the EXTREME IN ME? Seems to have chilled right out..
And ya’ know? If it could happen for me? It can happen for any of us Divergent types, I imagine.. I got no advice. Don’t know your boy, so can get no sense of him.. But theres damn sure hope for him.. You seem to be an amazing Mother! Holy shit! I wish mine would been half the woman that you appear to be…
It was a keyboard and screen that was the start of all of the better changes in life, for me.. How I learned to communicate effectively with others.. I had to have some physical distance, and just have that screen to focus on… Took a lot of years for it to all work itself out.. But it did work.. Took maybe 10 years before I “communicated with someone online, bur within a year or 2 after I was having real conversations, with real people, in PUBLIC PLACES! Which fact still amazes me today, 30 years from when that process all started out…
I dunno’ how it all work out for your boy.. I do know! That there were some few people, who had an incredibly great, positive impact on me at times, and they never knew of it, because it took some years for me to put all of the different pieces together, in me, to be able to understand their words.. At first I could “only feel them”, those words.. But I wasn’t at all sure what they meant? So wouldn’t, COULD NOT! Respond until iy became clear to that “Hidden me”, that no one in the world could ever see.. Because I didn’t know how to escape “my self” yet.. and become “Open to the World”…
Those people who had that lasting impact? They were always very loving and accepting, always kind even when I was a non verbal little psycho tearing the whole room apart around them… It was only 3 people that I can thik of just now.. But how they acted with me did register.. It would come back in my memory over and over and over.. Because I couldn’t figure it out.. Hahahaha! And Autistic me? Couldn’t ever let go of anything! Never! Until I understood what it was, inside me somewhere.. My ‘inner me?’ He still, has no words.. Does not think in words… He only feels… But I think, that “we” ?? Are very close now.. To becoming one whole person.. I don’t know how that will be… But I am getting “better”.. Still calm and in emotional balance.. Still just as obsessive as ever I was.. But no longer the extreme emotions all over the map, defensive, no anger even!.. I think maybe that this is where “Normies” emotional level is.. Hahahaha! This “low grade” weak stuff… I can see how this weak, blase’, kind emotions in someone might have made them freak straight the fuck out, running into mne on a ‘rant” or break…
But people don’t scared of me anymore, not really.. Not like they used too… Still, nothing in life had ever even “hindered my main drive” that prime program”.. It had to run itself out, and finish that program. I am still not sure what he found, my inner me.. Because that ASSHOLE never has talked to me.. No words in his head.. But we are really together inside me now.. And not hurting anyone or doing any kind of harm in the world today…
I would wish you some hope, fear Lady.. I am wishing that a real deep peace can find you and wrap you up in it.. I really liked it, reading your words… Thank you for being who you are.. I SEE YOU! Most people still look like ‘Ghosts”, meaningless images.. But I can see you.. with all of me.. Hug that boy of yours, did ever he want a hug from me..
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Thank you for your wonderful reply. I keep re- reading your comment. You have given me such a great insight on what my son may be experiencing. I feel we have been walking blind and this little bit of insight sheds light in a world where it’s been dark most of the time. I have hope that I will be able to communicate with my son, or that he can feel more real eventually. Maybe he’ll learn his own tricks like you did so that he can feel a little bit of connection. I’m so happy that you’re able to have communication with “real people”. I’m so happy you had people that had a good impact on your life. I love how you describe your inner you. It sheds so much light in seeing my son now. Thank you for saying you see me. Something many may see as so simple but to me, it touched touched my heart so much. Thank you for connecting with me, for reaching out. With much love, ❤️
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I know.. That I am not “like” your son, though no doubt he and I do share some “traits”.. What I sensed immediate as I read “your words”.. Then went and looked up more of your “Little Monkey”..{Monkeynism!} Awesome word! Instant personal identification with.. Wondered why I had not come up with that same term for myself? It fit that child I was soo well.. I was one of those mean little shot slinging Monkeys too! As I child, the first “safe beings” that I met were all animals… Some people have told me that they think that i have some “Gift” ? With animals.. But they do not KNOW autistic.. I think maybe.. not sure, because that child I was had no words.. But he recognized that he was an animal too! Just like these other ones.. Just alike, in so many ways… Now, I have seen “Therapy Dogs” recognized as being sometimes a great gift among the divergent.. That is true thing.. I cannot know, what my little brother might see? But Animals were hugely attractive to and calming, happy making.. But also the problem then was for whatever caregiver, was to get me away from animals, because I think I never would have left them on my own.. Chickens FASCINATED ME since the first one I saw, and I still remember that one! A fancy white Bantam Rooster across the street from where I lived.. I got beaten more times th.. No matter.. I was maybe 3? Always trying to get to that chicken, charge right across the street..Did get hit by a car once.. I ran into the drivers door of a truck 1 time I remember every little detail about that trucks door ever since.. Hahahaha! I dunno’.. I still have a thing about chickens, Would be raising a big flock, could I.. but then breeding, Separate pens for different varieties, plus the hybrids. Because I would have to make the chickens “better” Try to create the best chicken possible.. Grow organically everything they need to live… Crazy stuff.. But that has always been the “way it works” for me.. I had to KNOW! Had to everything that was related to that “PRIME” obsession.. One of my “Quirks, Autistique! Magnifique! Is related to “Words”.. Always. Maybe the first one, and maybe? What kept me non verbal, non communicative.. I know that I sometimes would get “fixated”.. I remember hearing people saying things about that.. But it was never the face.. I didn’t even see that face.. I heard the WORD! Some words could “catch me”.. Hard to explain! I get soo frustrated still! I have a “blog” of my own, where I just write to me, for me, still trying to “make a connection”.. I would invite you to read my words there? Only if you think they could serve you and that 1 like me..??? It is easier for me to be clear, spell and punctuate, communicate anything! If I have it in a format where I can re~ edit. I still have a hard time with “getting words Out!”.. I know the word, but the first time that I type it? Can have all of correct letters but in no meaningful order.. I thought that I typed it just as I was thinking it.. But somewhere between that vocabulary center in my brain, and these fingertips is some kind of “disconnect”.. I don’t get it, why? I am always surprised at my “nonsense” words. That was not what I was typing, but it is always the correct letters to spell what word I though.. Just unordered… 4 hours 15 minutes so far on this one message.. Thats how hard it is.. On my blog, I write all about me, in particular what things disturb me.. The Medical Professionals I have a BIG PROBLEM with… harrypotheadautisticpolymath.wordpress.com I hate that! I can’t MAKE IT ALL BE RIGHT! .COM .COM It really fucking bugs me, just a little thing like not being able to have that word all together on the same as it SHOULD BE! Hahahahaha! Fuck me! Story of my life, right there.. Ready to die or kill somebody because my word didn’t come out right, and I can’t make it here! I only recently started actively communicating within the divergent.. Although I have been “trolling” monitoring the online Autism Affinity groups well over 10 years Same like the first time.. Took me 10 years before I talked to some person then.. This is the longest conversation with a Real Person, about me, autism, ever in my life.. In person, in a message like this.. You.. First person.. You should know that.. It was that kindness in you? Towards your son? That love I saw first.. That was made me cry cry cry.. I did see you then, so wrote whatever I wrote.. I had no choice.. I never do, about some things.. And I never forget those very kind people who touched my heart, and never knew how powerful a impact, what a life changing good thing…
You know… And that makes me feel better.. I owe those people.. And I knew that you have a boy something like I was.. maybe just a little, but he seems to have all of the same monkey that I do, for a fact.. Share some kindness to that one I would, and You, one of the HOLY MOTHERS.. I see you now always.. I know that I will not lose the memory of you.. Do anything for you and that Child.. I owe something to this world.. But I KNOW THAT I CANNOT KNOW, what it is you may need, or “Mowgli” Jungle Boy… Maybe you can find something in my other words? I don’t know.. But help you, and that boy? Do anything for him..
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Thank you for your words. I read your words and identify traits that you describe with my son. It’s a gateway of sorts to understand him a little bit more. Thank you.
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