Thursday, April 08, 2021

This is Me

I yelled at my chiropractor today. Like, really yelled. 

Now, I’m a quiet person, and those who know me are probably thinking I don’t even know how to yell. But I did. 

I didn’t yell in anger, mind you (well, kinda.) She was yelling at me... from literally 3 feet away, maybe... out of excitement... over my crutches. 

And I couldn’t take her volume, okay? 

I mean, I knew this was going to happen. It was the first time she’s seen me since I’ve started using the crutches and she all of a sudden realized I had this different mode of mobility (and she was the one to suggest them in the first place.) And, like it does when she’s excited about anything - her voice volume increased exponentially so that she could “properly” express how great I looked! Wow! Look at you! And everything so exciting and wonderful and amazing. And she’s standing right there, using her BIG outside voice, not across a large gymnasium or something, but right there, and I just found myself uncontrollably matching her volume level to let her know, “YOU’RE LOUD!” 

And then she quieted down. And I apologized. And life went on, we had a lovely conversation, I had my adjustment, and all is basically well.

Except that it’s several hours later and I still can’t believe I childishly yelled at my chiropractor like that.

But, man. I really can’t believe how incredibly LOUD she got/gets whenever she’s overly excited. 

And, really. Geez. From my perspective, me using the crutches is so completely not that amazing or wonderful or something that makes me feel (emotionally) great or anything. Sure, my pain is eased a bit, which is the whole point of using them. So, yah, yay. But, from my stance on things, I in no way feel less disabled even with my pain lessened. I actually feel more disabled when using them. 

Sure, my posture while walking is way better than it was than with just the walking stick. But I, as the person doing the walking, have never really felt like I’m walking in one particular way over another. I feel like just using the one, cool, wooden walking stick that Hubby lovingly crafted for me (anyone can use a walking stick, just because, ya know?)  just innately makes me look way less handicapped than I do clunking around with the 2 noisy, clanky, cold metal forearm crutches.

Even using regular under-the-armpit crutches wouldn’t make me feel so - other. People use regular crutches all the time when they hurt their legs or feet. It’s a temporary thing that will correct itself eventually. No big deal.

It’s just something about the forearm crutches, though, that indicates, “that person is disabled. Different. Other. Someone to be careful around. Someone to try to not stare at. Someone to try to act normal around, like ‘nothing to see here, folks.’ But they do wonder and stare and probably want to ask questions, but that would be rude, so they just continue trying to act normal and casual and like everything’s the same as it ever was, no big deal. 

But, really, it’s a pretty big deal to me. I feel like people I know who used to feel comfortable around me, now look at me wondering how to just be, like they used to. And for people who don’t know me at all, that just see this person maneuvering around with these clanky crutches, well... they’re stepping aside, giving me a wide berth, telling their kids not to stare, shushing their questions, trying to be as natural as the day is long, no big deal that an “other” is invading their space. 

Yeah. That’s how I feel. In a nutshell: like everyone is staring at me while trying to act like they’re not. Like everyone is trying to be careful around me, while trying to act like they’re not overly concerned. Trying to act casual and relaxed while clearly they’re at least a little uneasy in my presence.

And all that, to me, makes me feel invisible and other. People try to act like my presence (my crutches) is no big deal by just ignoring the fact that I’m there at all. Or smiling at me quietly while they don’t say the thing or ask the question of me that’s running through their head.

Or, on the other hand, I don’t need or want people to get overly excited for me and want nothing more than to talk at me about how amazing this is and isn’t it so wonderful?! Yeah. Also not great.  

I know. It’s complicated. A few people I know even really do make me feel totally fine and chill, like nothing’s changed at all. I’m so happy to have these people in my life.

And I know some people who know me who are reading this are absolutely thinking this is ridiculous and absolutely not true and all in my head and I should not now, not ever feel this way. Geez! Really, Amy! Get over yourself!

But it is how I feel. I’m the one with the disability. I’m the one with the diminishing abilities. I’m the one trying to adapt to using new aids to help me keep as active as I can. And this is the way I feel. This is the way using these particular crutches make me feel. It’s my truth, even if it’s totally unfounded to everyone else, totally not how anyone else is really perceiving me at all. It’s the way I feel. And to tell me to not feel this way, that I shouldn’t feel this way, that it’s ridiculous for me to feel this way - well, that’s just not fair of anyone else to say. No one else is me but me and I’m allowed to feel however I do. 

No one is going through the particular physical pain and the changes and the adjustments I’m going though but me. Sure, others in my little world have their own adaptations to make regarding my changes, and they have every right to feel however it is they feel about that for themselves. But I’m experiencing this in the one unique-to-me way that I am, the only way I can, and that’s that. I won’t apologize or agree that I should get over it or acknowledge yet that I’m making a mountain out of a molehill, or anything. This is how my world feels to me right now. It may very well change. I bet it will, with time. But for now, this is it and that’s that. Full stop. 

So when my chiropractor suggests I give forearm crutches a try and I tell her I used them years ago but I hated them... and she doesn’t even ask me why I hated them, but I can surmise that she thinks it’s just because they were too heavy or something... and then she gets way, way over-the-top excited (excited for me) to see me use them and look so good and, wow!, isn’t this so wonderful?!... well, really, it’s not. Not so exciting. Sure, yes, helpful for the pain (although now I have different pains, possibly worse, in my legs at times. But that’s a different story), for which I am very grateful. But otherwise? It’s a lot to unpack for me. It just is.

Anyway. I’m sorry I yelled at her. But it needed to be done. Not only to quiet her down, but to make myself be heard. 

I am grateful she listened to me. Thank you for listening, too.

Sunday, March 28, 2021

I’ve Been Cancelled

Hi there. Thought I’d check in. I know it’s been way too long. Wanted to say... well, not enough about hardly any of all the things swirling around in my head. 

But y’all deserve at least a bit of an update. I mean, if you’re a friend of mine on Facebook, you may recall that I’ve already reported this. But for anyone who happens to read this and hasn’t otherwise gotten the news...

I did not have my nerve stimulator trial. Nor will I have it, ever. 

I know, right? Shocking. This was not my decision. And I found out 2 days before I was to have the procedure that they were cancelling it. Why, you ask? Because I had - I have, I always have - a UTI. And that infection is likely to lead to infection where the leads are placed into the spine. Even if they treat and cure an infection right before the procedure is done, the next imminent infection will cause the same threat of infection in the area of the leads. And so on and so one.

And what makes this all the more maddening is that I told the doctor about my history with UTIs! Back in September when I was theoretically prepping for the procedure to happen in November. He said I would have to get bloodwork and a urine culture done ahead of the trial and he said jokingly, “So don’t get a UTI!” As he waggled his finger at me. Well, I told him, I always have a UTI! Like, literally always. A urologist told me semi recently that if I am ever randomly tested, it will always come back showing infection. It’s just who I am as someone with Spina Bifida. It’s common for us all in this community. the time, he was like, Oh. Well, maybe if we can get your PCP to sign off on this and approve you going forward, we can still do it. 

Okay. Good. Okay. 

But then here we were in real life and my test comes back showing a “raging” infection and even though my PCP did talk to the doc and try to move things along, he cancelled it. His nurse - the person I’d mostly been talking to these last few months - called to tell me so. And she said he (the doctor) definitely wants to talk to me and will be calling me himself to discuss what other options there are to look at for me. But, for now, he at least wanted her to call and say we’d have to cancel. Not just postpone, mind you. Cancel all together. Because if I’m always likely to have a UTI, there’s always likely to be a threat of infection at the procedure site. 

And here we are a couple weeks later, and he hasn’t called me yet. And I don’t expect he ever will. Done. This and all other options with him are done. He told me last June that the “only” option for my relief of pain was this nerve stimulator. So now that’s off the table. No other options with him. I’m not about to call him. I’m sure he won’t call me,

Maddening. Frustrating. Sad. Extremely Disappointing, depressing, and disheartening. Grrrrr.... 

But! My chiropractor (whom, honestly often makes me angry, herself, in various ways) had suggested something that’s turned out to be useful in the midst of this latest kerfuffle. She suggested I break out my old Canadian crutches (that I hardly ever used and hated so, so much), because they will force me to walk with a different/better posture than I currently do, thus taking pressure off of my back and legs.

Well, I couldn’t find my old crutches, but I ordered some new ones. And they are pretty sleek. And, oh my gosh, do they work! I’m feeling considerably less pain as I walk and, according to Swee and Hubby, I’m zooming around with them like I haven’t zoomed in ages (and unlike the Zooming we’ve all been doing way too much of in this pandemic lifestyle we’ve all gotten used to.) what a relief! Really helpful -more than I ever thought they’d be. 

So, there you are. I will not be cancelled! You can try to break me, but I will not be broken! I will always find a way. Get back up, dust myself off, and try try again. Something has got to work. There is always an answer. You just have to wade through a lot of crap, sometimes to get there. Crap and disappointment. Anger and frustration. But sometimes you need a bit of all that to finally push you to find the best answer you could possibly hope for. The best answer for you. Something will work, even when everything else doesn’t. Even when everyone else says no. You’ve just got to say yes yourself. It just takes one yes to get what you need. That’s it.

I’ve found a great answer for me. Maybe someday there will be an even better answer. But for now, this is my yes. This is my relief. This is what I’ve been waiting for this whole time, and I didn’t even know it. 

Who cares what I can’t do. I can do this. And it works for me. 

I’m back, baby. Zoom zoom...

Saturday, January 30, 2021

Help! I Need Somebody.

Uh, no I don’t. 

I am constantly being asked if I need help. Constantly. By my mother. Just her. Mostly around food prep and service. Not her saying, “let me know if you need help.” which I think I would take more kindly to. But, “Do you need help?” 

No. Maybe. I don’t know. But - I promise you - I’ll let you know. 

Dad asks me occasionally, but not nearly as much, and in much more tolerable ways. He asks or tells me specific things, like: “Do you want me to bring your tea in when it’s ready?” or “I will bring in your tea.” “Do you want me to carry that?”, or, “I cleared a path in the snow to your car and cleaned it off for you.” Or even, he might ask a more general question, like, “Can I help you with that?” but he’s asking about a specific task he sees me doing and possibly struggling with a bit. It’s not an all-encompassing, “Need any help?” called from somewhere else in the room by someone who doesn’t even see what I may or may not be doing. 

Most of the time - yeah, sure - some help would probably be nice. But I know what I can do on my own, and I ask for help with the things I need it for. And I usually ask Sweetie. Even if that means walking past my parents, into the other room, and interrupting her from whatever she’s doing. And 99% of the time, she is more than willing to help. She rarely, if ever, asks if I need the assistance. But when I ask her for it, she’s right there for me, no eye rolls, huffs, or whines about it. She might say (kinda usually does say), “Yes, in a minute.” But she finishes the thing she’s quickly doing and does as I’ve asked of her.  

And I think this is important. Super important. Sweetie has learned, by virtue of being my daughter, that some things are difficult for me. And so I need her to help me do them. Hubby obviously helps me out as well. A lot. But neither of them blindly ask me with every move I make if I need any help. Both he and Sweetie know I will ask them when I need them. They trust that I know myself and my boundaries well enough. I will ask. I do ask. Really, I will. 

Sweetie, though. Man. If Mom asks me if I need help, and it’s a situation where I actually do need help, I’ll usually say, “Sweetie will do it.” And Sweetie will be right there and, if Mom protests that, no, she can do it so that Sweetie doesn’t have to get up or stop whatever she’s doing, or whatever...Sweetie actually responds fiercely, “No! I’ll do it!” As if to say, “No. she asked me, she’s my mom. I will be the one to help her. Not you!” 

Or. Or! Mom will do her regularly scheduled ask of whether I need help or not (Seriously. It’s almost like a game at this point. I know she’s going to ask, and she knows I’m going to say no.) I’ll say no. But maybe now mom is actually near me and sees what I’m doing and probably feels that I really would be much better off if she just takes over. So she starts to do just that, or at least ask me again if I’m sure I don’t need help. It’s at this point that Sweetie will chime in with a stern, “She said no. She’s fine. Nana! She doesn’t need any help. Let her do it!” 

I know I should be mad at Sweetie for talking to her grandmother this way. I should tell Sweetie to watch her tone and just stay out of it. But usually? I’m actually kind of impressed with her for knowing me so well, trusting my abilities so well, trusting me so well, and having faith in me that I can do anything I set my mind to and, gosh darn it, wondering why in the world can’t others know the same about me?! 

I know. I know. My mom is my mom and she just doesn’t want me to do anything to exacerbate my pain. She knows I hurt. Probably knows I hurt much more than I let on. She wants to do whatever she can to ease any of this from my life. She’s a mom. She’s my mom. It’s what moms do. 

But, think of it from my point of view.

To me, I hardly ever move. I sit on the couch, get up to go to the bathroom throughout the day, then always right back to the couch. I feel bad about not moving much. I feel like my lack of movement is actually weakening my muscles and ultimately making me hurt more. It’s good for me to move as much as I can! So if lunch or dinner needs to be prepared, even though I’m in pain, I’ll go to the kitchen to make it happen. With Sweetie’s help most of the time, for dinners, anyway. Mind you, Hubby is the family chef. I’m never up and actually working on creating a meal. I’m putting existing food on plates to heat up - because Hubby is at work weekday nights and Sweetie and I need to eat. It’s never a huge chore to make food happen for us cuz it’s already ready already. But it’s enough of a thing to get me on my feet, working through the pain, and doing what I need to do to feed us. 

If I literally just sat on my butt all day, save for trips to the bathroom - which, honestly, that is pretty much my typical weekend anyway - with literally nothing else to do because everything is being done for me and/or brought to me - well, my muscles are just going to get weaker and weaker. My pain will get worse and worse. I will lose my abilities to do anything! And so, I need to continue to do what I can for myself. I need to push on. I need to, or I’ll literally lose all sense of myself. I’ll feel more helpless that I already do. I don’t need constant looking after, constant assistance. I am made to feel like I’m a fragile doll not able to take care of herself.  Let me be me, so I don’t feel like no one at all. 

Really. I do know my limits. I do. I do ask for help, from whomever is around at the time to do it. 

And, sure, the moving I do to complete a chore like dinner preparation is not the significant amount of moving that I need that would truly help me. Exercising would be much, much more helpful. And, with enough exercise, perhaps the other, more trivial moving around I do wouldn’t be nearly as painful. But, right now, I personally see any movement as good movement. I’m not an exerciser. I know I should be. But I’m not. I’ll work on changing this mindset. I know it would be beneficial. 

Anyway. That’s my rant of a post. Sorry. You probably won’t/don’t get what my big problem is, anyway. So what if I’m offered help a lot? That’s nice! People are looking out for me, not wanting me to do more than I should. Yeah. Okay. But it’s the blind asks, I think, that I’m truly upset by. You don’t even see what I’m doing, or you know that I just walked in the kitchen and haven’t had time to do anything yet, but you’re already asking if I need help. I don’t know! I just got here! I don’t know what I’m doing yet. I’ll let you know. I promise. 

And, at any rate, I’ve got my Sweetie to take care of me. My fierce defender. My confident girl who’s confident in me. 

I may not be able to do everything. I definitely know I shouldn’t even try to do everything. But with Sweetie’s help, together we can do anything. 

Saturday, January 23, 2021

I Am...

 (Inspired by In and Of Itself, now available on Hulu.) 

... still here.

...still in pain. 








(My trial for my nerve stimulator that was supposed to happen in November, but was postponed until January due to Covid, was postponed again because my doctor had to go in for surgery himself. Oh, and insurance denied me anyway. New insurance now, but other patients in line got to sneak ahead of me during the transfer time. Now I’m looking at a procedure date in mid April. Not that they can even schedule it until a month out. But, still, I’m in line for April. Here’s hopin’...)










(Will my new insurance cover the procedure? What if they don’t? Why did the old insurance deny me? Why hasn’t my related appointment from last July processed through the insurance at all, one way or the other? Does it even matter, since I don’t have that insurance anymore? What if I DO need another psych eval to make the new insurance approve it, but no one is thinking right now that this is the case? Is not moving very much good for me because it at least helps me stay out of more pain? Or is my lack of movement just making everything worse and more painful in the long run? What do I need to do to put me in the best situation possible, given my situation at hand?)

...needing to be left alone.

...needing some assistance.

...craving independence.

...accepting my limits.

...wanting social time with people I love and whom I find interesting.

...not wanting to always be the one who makes the plans for togetherness.

...concerned that if I don’t make something happen myself, nobody will.

...a worrier.

...trying to remember I am a good, fun person people enjoy being around. 

(If I had to pick one word tag off the wall of over 600 tags in the lobby of the Broadway show, In and Of Itself, I would assume the option would be there that said “I Am a Unifier.” Or, “I Am a Gatherer.” Something like that. And that is what I would choose for myself. I am the one who created the book club I was a part of for many years and which now continues without me {my choice - just not into it anymore.} I wanted a group of like-minded moms to come together for a safe place to discuss the trials and tribulations of parenting neuro-diverse kids and so I put that group together. I thought it would be fun to have a monthly game night with friends and arranged for that to happen too. But I am also the person who decided to “test” her friendship with her high school best friend and, at some point during that first year of college, stopped calling her to see if she’d ever be the one to call me instead. And she didn’t. So I am leery. Careful. A bit of a control freak. I bring together those I want to be with and make sure it happens regularly. I am a worrier who, on some level, feels that if I don’t work at keeping friendships going, that they will just fall away.) 

...a wife.

...a daughter.

...a sister. aunt.

...a mother.

...a writer.

...a woman.

...a problem solver.


(I took Sweetie to a local Fall Festival 2 or 3 years ago. She was volunteering there and I was just hanging out enjoying the beautiful day. While there I ran into an old acquaintance and we chatted a bit, she wanting to know what I did for work. Now, what I did for work then is the same as now - I call people who are past due on their medical bills to try to help them resolve them with either payment plans or financial aid. It’s by no means a glamorous job, but I really enjoy it, as well as the people I work with. Still, whenever I’m asked this question- what do you do? - I don’t exactly feel super proud of what I’ve made of myself and the “career” I find myself in. Some of my coworkers are teenagers! I talk to a fair amount of deadbeats who just don’t care. Some angry people. It’s nothing amazing by any means. BUT - I told this person what I did and she said, in a rather impressed way, “So, you’re a problem solver!” Huh. Yes. Yes, I am. I help people solve problems. I like it.) 






...easily over-stimulated.

...prone to snapping.

...a self-preservationist.

...the most pleasant person in New England.

(Yes. All of that. I am a quiet person who often does not know how to engage in small talk or contribute intelligently to conversations. I do not like large, loud groups of people and can not take being a part of such crowds for long stretches of time. But I know when and how to get myself out of these circumstances if I am at all able to. I take care of what I need to do for my own sanity. Self care, man. I’m not trying to be rude. I’m trying not to go crazy. And, yes, an older gentleman coworker of mine many years ago did, in fact, once tell me that I was the most pleasant person in New England.)

...amazing. inspiration. strong.



...a beautiful soul.


...a martyr.

(I have Spina Bifida. I have done things people would have never believed I could have done. I have done things maybe I shouldn’t have done. I do things in ways that work for me, that are not exactly easy ways to get things done. But I get things done. I don’t want help for things I know I could or should be able to get done on my own. I know I’m in pain. I know my way will take longer or not be so “pretty.” But there’s a method to my madness. Let me be. I promise I’ll ask for help if I feel I need it or find that, yeah, my way isn’t working so great after all. I’m getting better at asking for that help. I don’t do things on my own because I want to show what an inspiration I am or how strong I am. I don’t feel I’m those things at all. But others have told me I am, time and time again. Whatever. I’m doing things because they need to get done and I feel I can do the things. If I can’t, I can’t. If my body hurts too much and I just don’t want to, I’ll ask for help. Change is hard. But I know I’m changing and need to slow down. I’ll slow down. But in the meantime, let me be and do - at least try to do - what I think I can do.)








(I know “disabled” is the more PC term. I know people-first language matters. But I personally don’t care. I prefer “handicapped” actually because I think it’s more accurate. Disabled to me sounds like I’m not able to do something. Whereas handicapped sounds to me like I can do a thing, I just might do it a little differently or need a bit of help doing it, either by person, machine or equipment. I’m up for trying most things. At least, I was more willing in my less-pained days. But my mind works just fine. I have a sense of humor about things. I can recognize my limits and take heed. But don’t count me out on anything. I’d like to give it a shot, whatever it is. Probably.) 


...a lot.


...a reader.

...a writer.

...a puzzler.

...curious. who appreciates the arts.


I am so many things. On any given day you can find me in a great mood, a blah mood, or a bad mood. Either all day long or changing back and forth multiple times throughout the day. Just like all of us. Who am I? Who are you? To everyone else, sure. But also to yourself. Just who are you and whom do you want the world to see in you? Think about it. Be deliberate. Make a choice. How you see yourself may very well not be how others see you. But is that okay? Does your own self image have to match how others see you? Think about it. I don’t know the answer. I think we can actually learn a lot about ourselves by learning how others perceive us. But it’s not everything. It’s not necessarily the whole truth. Figure out how you want to be seen. That’s a good start. Figure it out and get to actually being that person. But don’t be afraid to change. To falter. To be someone else from time to time. Like I said, we are all multifaceted, multidimensional. And that’s not only okay, that’s great! Just be aware that others most likely see you much differently than you see yourself. Be yourself. Be better than who you think you are. Be everything. And most importantly, be...

...still here. 

Saturday, January 09, 2021

Express Yourself

I just finished the book, Life at Hamilton, by Mike Anthony. Anthony is the bar tending manager at the Richard Rodgers Theatre in NYC where Hamilton has been for its entire run. The book showcases Anthony’s many interactions with all sorts of different people - from the very, very famous to the everyday people lucky enough to find themselves attending a performance. It’s a great book! Very interesting, heartwarming, and real. Anthony can get a little long winded, and some of his run-on sentences have run-on sentences themselves. But as far as storytelling goes, he does a great job and it’s a really fun read.  


One of his stories tells of his encounter with a truly giddy little girl, maybe 8 years old, who is positively bursting with joy at her finally attending this amazing show. As he’s done with so many other young ones there to see the show, he excitedly asks this bouncing girl at intermission, “Isn’t it the best show you’ve ever seen?!” 

Which stops this girl in her tracks. No more bouncing. The gleaming beam of a smile instantly morphs into a serious look of consideration. She says nothing for several minutes as Anthony pours and serves her family’s beverages, and gathers the desired snacks her family has asked for. Finally, after much thought, the little girl serves up her answer. “Well, I don’t know if it’s the best show I’ve ever seen. But I do know it’s absolutely wonderful.”

I love this story. And I understand this story. And, as soon as that little girl stopped bouncing and started seriously contemplating, I had a guess about this story. About that little girl.

I thought to myself, “that girl is autistic.”

Now, Anthony never confirms this one way or the other. Heck, it probably never even crossed his mind to consider it. He was simply endeared by this thoughtful little girl who wanted to give an honest answer to an off the cuff question. It is a great story. And, honestly, it makes no difference one way or the other what challenges this child may or may not be living with. Maybe she’s completely neurotypical and is just a thoughtful kid. But, for me, and my experience as the mother of someone on the spectrum, I can tell you - her response seemed very familiar. And a sign that she may just very well be on the spectrum herself. 

You see, Sweetie, and oh so many others who find themselves somewhere on the neuro-diversity spectrum, is unfailingly honest. Very truthful. And I can so easily imagine that if Anthony was asking a younger Sweetie if she thought this was the best show ever, she too would have stopped and pondered and given her most honest answer. 

You see, everyone on the spectrum is different, true. But a pretty common trait among many is experiencing a difficulty with understanding expressions, and communication in general. It’s typically at least a little difficult for an autistic brain to translate a hyperbolic phrase “we all” say, into something more real and relatable. It’s very much a learned skill, and for the autistic brain, it takes more practice than for others.

Sweetie is now a young adult. She’s had years of practice with learning and understanding all sorts of sayings and interesting turns of phrasing. So, for instance, if she were now asked a similar question as this little girl about something equally as thrilling as finally partaking in a long-anticipated treat, Sweetie  would understand and successfully translate the hyperbolic nature of the phrase and answer appropriately. Neuro-typically appropriately. As expected by any neuro-typical inquirer. 

But I can definitely remember some instances in her younger days when she wasn’t so great at interpreting common American phrase...

I once asked a young Sweetie - maybe 4 years old, to go straighten up the bathroom sink area, since I was cleaning the house and this seemed a simple way she could try to help me out. Cut to a few minutes later when she called me in to the bathroom to excitedly show me the great job she did... by taking all the things on the bathroom counter and lining them up, end to end, in a straight line. Ah, yep. “Straightened up.” I guess she at least did do what I asked of her. 

Another time when, around the same age, she wanted me to do something for her or play something with her - I don’t exactly remember. But whatever it was, I told her to, “hold your horses.” And so? She went right over to her horse head-on-a-stick riding toy and, of course, held it. Probably also wondering why in the world this was a thing she’d ever be asked to do, and how it was going to get mommy to do the thing she wanted done. 

And then there was the time, same-ish age, when Hubby and I - lazy parents that we were - asked Sweetie to go to the upstairs bathroom and bring down a roll of toilet paper to the downstairs bathroom. She had many questions for us. We could see that she doubted this instruction very much. But we were clear and insistent. Bring the toilet paper that’s upstairs, downstairs. Well, I’m sure you already know where this is going. In just a few minutes, there Sweetie stood at the top of the stairs with her arms full of unraveled toilet paper from the in-use upstairs roll. 

All of these instances we thought were so funny. So cute. So typical, we guessed, of any little kid learning about what different things mean when they’re said. And, really, maybe that’s all it was. Just a typical kid doing typical little kid goofs in their learning to understand how language is used.

But then again, maybe it was a sign of diagnoses yet to come, some 10 or so years later. Especially that lining things up thing. That is something that kids on the spectrum do like to do. And I think I remember her sometimes doing this with her toys as well.

She was also - still is, pretty much - someone who you could not tease.  She always thought she was being negatively picked on. That whomever was doing the teasing (mostly Daddy, Grampy or Papa D), truly believed whatever they were saying and were trying to convince Sweetie to believe it too. And. You know what? It literally just connected for me. As someone on the spectrum, of course she didn’t like this! She takes everything literally. There is no teasing to get, only truth. So when people she knows, loves,  and trusts start telling her things she knows to be one way are, in fact, another way, of course that’s upsetting! Sigh... it’s tough to be a Sweetie sometimes...

And there’s the fact that we had to go ahead and tell her, at 13 years old, that Santa wasn’t as real as she thought he was. At least not in the way she thought he was real. And she was shocked. She trusted us to always tell her the truth. We had always encouraged her belief in Santa, the person. Why in the world should she have ever thought we were lying to her?! That’s just not a concept - lying and deception - that was in her vocabulary. Nothing she would ever do, and nothing she ever expected from others. Especially from her parents - the most trustworthy people in her life. 

I could go on. Hindsight certainly is 20/20. When Sweetie’s PCP asked Hubby and I, about 3 1/2 years ago, if we ever considered Sweetie has High Functioning Autism, (at the same time I was suggesting to her that I thought Sweetie definitely has ADHD - which her doctor agreed with), well, we were pretty taken aback. “Noooooooo....” was my, “I’ve never considered that, ever” response. 

But then? We 3 got to investigating and learning, testing and figuring out that, “Yeah. Huh. Sweetie totally is autistic. No question about it.” Everything we read or otherwise learned about high functioning autism hit the nail on the head. Explanations for the quirky things Sweetie has always done, and her sometimes over-the-top reactions to what neuro-typicals would mostly consider no-big-deal happenings. 

And that whole “literal” thing. As described above, Sweetie - and many, many others on the spectrum - is very, very literal. She says what she means and means what she says (but maybe not - probably not - in the correct tone in which she’s supposed to say it.) She may think she’s kidding about something, but the way it sounds out of her mouth doesn’t always sound jokey at all, but much more serious. But it’s still the case that the words she’s saying are truthful and what she intends to say. She’s still working on the tone thing. Getting better all the time. She’ll get there. It’s just another of those learned skills that don’t come as easily to understand as it does to many others. We, her parents, understand this. And we’re working on helping others to know better to listen to what Sweetie says, not always how she’s saying it. 

So, yeah. I guess that’s it. Not sure if this was the post I meant to get out today. But it’s the post that came. Beginning with that little girl at Hamilton who so honestly considered her answer to a seemingly simple question, rounding the curve to cute and quirky things Sweetie did as a kid, ending with figuring out what’s really going on in that head of hers even now (as best we can, anyway.) It’s a process. It’s definitely a learning curve. It’s something that not all people are going to pick up on - even those who think they, for sure, know Sweetie and would have never guessed that she’s - gasp - autistic! No way!

Way. Sweetie is High Functioning Autistic, and also has ADHD. We see it, she feels it, it’s a fact that she must deal with. And that she does deal with - beautifully. And getting better everyday about how she can fit herself - as is - more comfortably into the neuro-typical world around her. Not changing herself to fit. Just adjusting herself a little - her reactions, her understandings - to more closely align with what the rest of the world is trying to express to her, and vice versa.

You see, it’s like learning a new language. Her native tongue will always be her own. She’s just learning, at the same time, to communicate her own truth, while also understanding the same from others. 

She may not always be doing that the best way possible ever! But she’s doing it honestly, because that’s the only way she knows how to do things. 

And she’s doing a wonderful job. That’s for sure. 


Posted with Sweetie’s blessing. I’ve been sharing the link to all my posts of late with her, and will continue to do so. I’ve even invited her to my blog in its entirety, now that she’s 18. She says she doesn’t want to read it all. But she has read the recent links I’ve shared with her. For this post, she was a bit concerned with some of my phrasing, thinking my readers wouldn’t be clear about how some stories from her past went down. I assured her they would understand. But, beyond that, she is good with the overall post. 

Sunday, December 27, 2020

You’ve Got This

Huh. It’s been over a month since I last wrote. When we were in the middle of Covid quarantine. All good now! Back to work, feeling fine, and more or less at least temporarily immune to catching it again - depending on who you ask. It’s complicated. 

Anyway - when I started to write this, it was December 20th, 2020, which means it was Sweetie’s 18th birthday! 

You have not been looking forward to this birthday, Sweetie. Turning 18. Becoming an official adult. You still see yourself as a little girl and you don’t think you’re ready for all the responsibilities that come along with being a grown up. 

I can’t say I can blame you, honestly. But I also want to assure you not to worry.

It’s not like a switch has flicked and we are done raising you. “You’re good to go! Be free, my child! You’ve got this - have a great life.” No, it’s not like that at all. 

In fact, nothing has really changed, other than you can now vote, and it’s up to you to sign documents about your own health and personal dealings. But we can still advise you on what you’re signing, if you want our input. It’s up to you. Frankly, though, I’m not all that worried about any decisions you’ll make for yourself. Decisions that require paperwork, or not. You HAVE got this! You’re smarter and more reasonable than you give yourself credit for when it comes to making important choices about what’s best for you. 

You are an extremely careful and cautious person. You do not take any chances when it comes to your own safety or that of those you love. You always err on the side of care and self preservation. Maybe to a fault. And maybe - almost certainly - this has a little to do with the touch of anxiety that twitches in your brain. That alert of fear that makes you just a bit nervous to move ahead on certain uncertain things. It’s not necessarily a bad thing. It’s good to be safe, to be cautious, to take your time. You look at the facts, you take the time for self reflection, you don’t let yourself be swayed by others’ mere, possibly uneducated opinions. You do you, and you are proud of it. And we are proud of you every time you stand up for your own convictions. 

This trait of yours - to do and think as you wish, no matter others’ attempted influence - goes way back. We remember your kindergarten teacher telling us how you always played with the toys and tools you wanted during free time, never following along with what the other kids were doing. Even those kids you had become friendly with. Nope. You stuck to your guns and entertained yourself exactly how you wanted to be entertained. 

You are thoughtful. You sometimes think you have no particular opinion on certain subjects  - especially “grown up” subjects such as politics or finances. But you do have opinions, and understanding! And you can be very mature about what you think and how you express yourself. I remember when you were younger - maybe 4th grade or so - and we surprised you after school by taking you to the space and science museum. There was a gift shop at the museum and you asked us if this was a buying day or a just looking day. It had to be a “just looking” day, we told you. But you put up no fuss, didn’t ask for anything, understood that money could be a struggle for us. You respected and accepted our answer and went on about your surprise treat of an afternoon having the time of your life. Simple as that.  

It may take you a minute or two to collect your thoughts in order to express them in a way that makes sense to you. But when you do speak them... well, those thoughts make sense to anyone listening. You are clear, well spoken and smart about why you believe in a certain thing, why you think a certain way. You clearly state what you need. We are constantly in awe of how well you can express what you’re thinking and why. You are wise beyond your years. 

This may come through the most after you’ve experienced a bit of a meltdown. Meltdowns are something you experience when your senses have been overwhelmed. It’s a common happening for you, or anyone like you, who lives their life managing ADHD and ASD (Autism Spectrum Disorder) symptoms. So, yes, you may melt down, cry, yell, run away and slam doors. But we have learned to let you be when this happens. We give you a few minutes and, sure enough, in just a little bit you will inevitably come back to us, now calmed down, and tell us with a cool head the emotions you’re feeling, why you’re feeling them, and what you need from us to make a change for the better so that maybe this won’t happen again. Your words are wise and well thought out and we are always impressed. You know who you are and what you need from yourself and others to get by. 

You are brave! To be able to voice these thoughts and opinions as clearly as you do, backed up with good reasoning and understanding of the situation at hand - well, it’s just beautiful to watch. And what’s more, you don’t care if others around you feel differently than you do. You know how you feel. You’re fine with - actually encourage - others to know and express their own true hearts. But whatever they all think or do is not going to stop you from trusting your own heart and living your life the best way you see fit for you. Most people your age want so much to fit in, be liked, and do the cool, popular thing. But you! You are bravely living your best life, no matter what others may say or think. And yet, you would never, ever admit to this bravery in this way. It’s just what one should do, how a person should be - true to their own self. You’re just living your life, making the most out of the cards you’ve been dealt - and doing it beautifully, in our opinion.. 

You are kind and loyal. You truly care about others - all people everywhere, but especially those you love. You are a fierce defender not only of your own rights and beliefs, as described above, but also everyone else’s as well. You keep others’ confidences, even if they haven’t expressly asked you to. This, like all your wonderful characteristics, have been a part of you all your life. I remember asking you at some point in middle school if one friend or another of yours had a boyfriend or girlfriend. You wouldn’t tell me because you said it was not your information to share nor my information to know. Fair enough. But on the other hand, you understand when the important secrets need to be shared, and have asked for our help with big issues the few rare times when they have crept into your realm of existence. You just know how to take care of people - including yourself - and do what needs to be done to make sure that happens. Plain and simple. 

Don’t get me wrong - you have your quirks. You do things we don’t like. You could be much more eloquent for our taste in how you get along with others from time to time. But you are you. At least Dad and I know why you sometimes behave in less than desirable ways. You have challenges you struggle with every day - struggles that the rest of us can’t even pretend to fully understand. But we have learned a lot and try to do the best we can to understand for ourselves who you are as a whole person. And we do what we can to educate others when they need a little bit more understanding themselves. We’ve taken care to make sure your particular needs are met. And I think we’ve done a pretty good job. Enough so that you have learned what you need to do for yourself in most cases. You’re doing great! We are so proud. 

So. You are 18. Officially an adult in the eyes of  U.S. law. But this is just the beginning. This is just a small stepping stone towards greater adventures, more adult responsibilities, and your whole life ahead of you. We are still here for you, and will be for as long as you need us. And I have a little secret for you... you will always need us, in one way or another. Just like we need you, now and always. I can’t imagine a world or a time when I won’t worry about you, or think of you, or hope that you are making good decisions for yourself and what will be your own family one day. 

But from what you’ve demonstrated already? I’m not all that concerned, really. Yeah, you’ve got this. You will be - you are - one fine human being. And we love you so much. Happy birthday, Swee. Keep on keepin on. 

Saturday, November 21, 2020

Yesterday Didn't Happen

Not the way it was supposed to, anyway.

That is, I did not have the procedure to start my nerve stimulator trial. Because - Covid 19 invaded the house. And quarantine ensued. 

No leaving the house means no procedure. For now. Trying again in mid January.

It’s okay, really. I was actually becoming really sad, even borderline depressed, that I was going to go through this trial and have said trial end the day before Thanksgiving. 

I don’t know that I’ve ever really explained in detail how this trial - vs. the actual procedure - actually works. So let me do that...

When one is chosen as a candidate for a nerve stimulator, there are many steps in the process towards actually getting it done. The main thing being that they first test out, with a trial period, whether or not this stimulator will actually work for you. So you have a procedure done where leads are put into your spine, much like an epidural is placed for a woman in labor. Once the leads are in, there’s a device taped to you back that controls how much your nerves are managed to stop the pain message from getting to your brain. This trial, where the leads are in and the device is taped on you, lasts 5-7 days. Days during which one should experience much less pain, theoretically. If this is, indeed, the case, then you may decide with your doctor that you want to go ahead with the actual procedure. So then you schedule a different time altogether when you will have that done. And that’s when the device that was taped on your back during the trial is placed inside your abdomen via a surgical procedure. 

Basically, you have the trial so you know darn well that this thing you’re having done is actually going to work. 

And so, as you can imagine, one should experience 5-7 days of relatively pain-free living during the trial period, assuming it all works as it should. But then the trial is over, the leads are removed, and you are back to living in pain from that day on until whenever the permanent procedure takes place (which could be weeks to months later.) In fact, I would say you’d most likely experience that returned pain as worse pain than it was in the first place, because you just had several days reprieve from it. So when it comes back it just hurts that much more. 

And my trial was scheduled to start yesterday, the 20th, and end on this coming Wednesday, the 25th. The day before Thanksgiving. Which would have meant an incredibly pained holiday for me. A day that’s supposed to be fun and festive and wonderful would most likely have been anything but, to me. 

I was truly not looking forward to that, as you can imagine. A major bummer.

So, I guess in the end, the fates took care of that worry for me and took the whole thing off the table. Trial now scheduled for January 15. Good to go - looking forward to it!

And I just keep on keeping on. I’ve been in pain this long, what’s a little bit longer? Best to make sure I’m healthy and 100% up for my trial to take place. It’s all for the good, all meant to be. 

And for now, my job - and the job of everyone in the house - is to abide by safe living practices, keep our distance from one another, and get through this as best we can. Hubby and I have been out of work for a week and a half now, with one more week to go. By then our household should be well and truly past this and life can go on. 

The break from work has been nice. But I can think of way more exciting ways to spend a work “vacation” than what’s been going on here. But then again, given the situation we find ourselves in, it could be waaaaaay worse. It’s not that awful. We’re all getting by. Surviving. Thank goodness. 

So, that’s my update. Not the update I was hoping to report today, but an update nonetheless. 

I’m reminded of a comedian’s comment I once heard. Don’t remember who it was, or what else he was talking about in his routine. But he was saying how he always loves when he’s next in line. He’s next! It’s happening! It’s almost his time! After all that waiting in that long line, he is finally next! The anticipation! The excitement! NEXT! Yes!

Well, I’m next, baby. Nerve stimulator trial - I’m coming for ya! I. Am. Next! And nothing’s gonna stop me now. 

Sunday, November 08, 2020

All the Feels

I’m here to write, but don’t know what to say. 

I guess I’m just glad for a brand new day. 

All the emotion, the pent up stress, the gloom -

I feel it releasing, yet coming too quick, too soon.

And it’s not just the race - Biden vs Trump. 

Although when I think of it, there’s certainly that lump

of pride in my throat, a weightlessness, a calm

It’s like our whole country has been soothed by a balm.

But aside from that there’s also this COVID-19. 

This thing that has controlled our lives, or so it seems.

And with that, the holidays! And how to proceed.

Do what people want, or what we need.

What I need, and Hubby, and Swee

Despite others saying, “all’s just fine, listen to me.”

Am I crazy taking this seriously, listening to science?

Or is the media and my peers making me biased?

Others say, “Don’t worry, news just tries to scare you.   

It points out the worst, but they really have no clue.

We are safe, there’s really nothing wrong,” 

Yet this virus is sometimes silent and often strong.

It’s not that I don’t trust, don’t love, don’t miss you.

It’s just that I want us all to be safe - that’s the issue.

And not just us, our dear ones, our fam.

But everyone I pass - we’re all on the lam

from Corona, and we just can’t know how to proceed.

It could not affect me, and - God forbid - it could lead

To your death, and I just won’t have that be.

Not on my watch. Keep us all healthy, if not happy. 

Let me stay safe, as I keep you.

And together we’ll gather when we’re truly able to. 

Okay - you think that’s it? I’m not done yet.

See, I’ve got this pain in my back that just won’t get.

But I’ve a date with my doc! November 20th’s the day! 

My trial for relief will begin - hurray! 

Cuz it hurts so much, y’all. It really does. 

To be finally pain-free - can you believe it, Cuz?

Hubby says I’m a martyr, that I just always “take it”

Without others ever knowing how much I can’t make it

another day, another step, another minute. 

Well, the game has arrived and I’m aiming to win it! 

Honestly I just want to go to the store, 

Take a walk in the woods, yeah, and so much more.

Man, I’m hoping this works, so many have had success.

It’s my turn now, yes it is - YES!

I’m betting on a pain-free holiday.

One where I’m truly thankful and can say, 

I’m free at last! I can do! I can live!

Oh, how happy I will be when I can give

all my focus, all my care

To the ones I love. And to not give a tear

to these aches, pulls and pains

Ahhhh, I’m hopeful I’ll see no remains.

Wish me well, please wish me luck. 

That I’m well and promptly pulled from the muck

And the mire, the terrible pit of pain goo. 

And I can let go of the pride that controls my boo hoos.

Tears of joy, of relief, just - you know - relaxation.

That’s what I need now - a new sensation.

My body, my brain, my heart, my soul. 

Just, ya know, no more toll. 

So anyway, that’s it. That’s all. It’s all there.

The country, the virus, myself - I’m aware

Of the changes that are coming! So good. So great!

But all of it still so unsure - so we wait.

There is hope, that’s for sure, but we just can’t know.

Just hope and trust it all - every bad thing - will go.

From the personal to national to worldwide...

So much is at stake. We must set our mind, 

believe in ourselves and do not waiver.

And can I ask just this one small favor?

We may not agree in lots of big things.

But we can get along fine if we all give wings

to love. To trust. To just trying to make things right. 

By working together and saying goodnight

to the struggles and strife that’s lead the way

for so long. Let’s just be done with it, okay.

Let’s come together and support this land, 

Our families, ourselves, and...

Find the peace we can take to our hearts. 

I don’t know - it sounds like a pretty good start

to healing - our country, ourselves, the earth.

That’s my thoughts  I’m done. For whatever it’s worth.