We’re going to be taking a detour from what I originally mentioned discussing this week…but, I’ll be getting back to that, probably next week. Because I am still in burnout mode. Not just from the emotions of everything going on globally, within our local community, and within my own personal life- but because self-care is a buzz word that defies adequate placement in my schedule.

Let me introduce myself for those of you new here or just stumbling across this post because of the topic. My name is Ariana, and sometimes I say really unpopular things. This is what I look like today (makeup took a little over 20 minutes, which I was feeling really good about because I rushed through this to get to a 740am therapy appointment on time- until I realized 2 hours later while in a separate session that I forgot the mascara).

Given that I sometimes say unpopular things, it might help you to visualize me better with this makeup instead. I don’t think saying unpopular things makes me a bad person. But sometimes my makeup is an external editorial comment on how I feel like others are perceiving me based on what I sometimes say or do.

I mostly talk about makeup as an interest right now, because it’s kind of the only thing I have time for…and, if you look at today, I am often moving so fast it doesn’t feel relaxing or like self-care, and aspects of the planned process are still being forgotten or left undone. But I do it every day, because it helps me feel like I haven’t been completely (physically at least) erased by the needs around me.

I used to have a whole lot of other ways of describing myself based on my interests, hobbies, the ability to hold a job, the ability to have time off and relax. But now, I am a full-time caregiver who participates in all of my Autistic son’s therapy. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. Sunday. Monday. Tuesday…you get the point. More than 40 hours a week 7 days a week of therapy alone. That is a statement, not a complaint. My participation is mandatory because he has behaviors that often necessitate a second therapist, which insurance doesn’t pay for. And, some of his programs require doing things like physically blocking access to public roads while he’s trying to pushing towards them with all his weight and strength, something many therapists don’t feel comfortable doing. He’s nearly as tall as I am and weighs about 130 pounds.

Certainly I would not have wished for him to have these challenges just for the sake of the quality of his own life. But you see, this isn’t just about things that have been happening to him and impacting only him. I have been the one to stand in drying vomit on my clothes from a sensory related issue with one kiddo waiting to pick up the other from dance class (after of course I scrubbed down the studio’s floor while trying to comfort and calm our son). I have been the one to scrub down the bathroom walls in Cabela’s and the local library because our son was enraged and smearing his feces. I have been the one to hold him for up to 6 hours a night in the middle of the night to ensure he wasn’t hurting himself while trying to self-harm. And, before you even question whether or not that was necessary (because some Autistics recommend just letting an Autistic individual self-harm), please know that he uses enough force when he’s upset that he’s capable of putting himself in the hospital if unchecked. So yes, that was necessary. All of this is certainly not the first choice I would have made for how to spend so much of my life. But because I have done so, we have seen things like his symptoms related to sensory differences and self-harming dramatically improve. And I have written about how we’ve moved through these circumstances not to embarrass him, but because other parents sometimes need and are looking for input on how others have handled these types of situations.

And there’s more, so, so much more. You can read over 4 years worth of previous posts here to see that for yourself if you’d like. It would be so easy for someone to look at his diagnosis list and say that it’s the combination of conditions, but I am aware of individuals for whom level 3 Autism is their only diagnosis with struggles every bit as or more profound than our son’s. There have been moments where things have been so hard, and I’ve had so little support, that everything in me thought I was going to break…and the only thing that kept me from doing so is the thought of what would happen to my children if I did.

Even though I risk offending someone with what I have to say today, I want you to know I am willing to listen to and honor the perspectives of others on this, and validate feelings that have been savaged and still pulsingly ache. And I ask the same in return.

Recently, one of our son’s RBT mentioned to me that the agency she works for is planning on changing their logo because of the controversy surrounding the use of puzzle pieces to represent Autism or Autism Awareness. Look, I don’t even really have time for social media (which is part of why I still don’t have any of those types of accounts), and I haven’t seen this referenced in any of the headlines for news articles I’ve read while using the bathroom or eating (yes, I have to multi-task to that degree, drank my breakfast smoothie while doing my makeup this morning even).

So, I had to Google the controversy mentioned. You can do the same, because I am only going to be addressing a couple of things here, and I am sure there are a wide array of perspectives on this.

Some object on the grounds they view puzzles as children’s toys (not my perspective, many puzzles are marketed directly to the adults who love doing them). Some object to painful associations with organizations using the puzzle pieces in their logos. Truly it would be a horrible thing to have a parent say in front of one that things became so desperate they imagined killing their child and themselves. Even harder to have it used as part of an international campaign. Some Autistics associate the puzzle piece logos with an Autism Speaks campaign where that specifically was done. You will never find me quibbling with the idea that this would be an awful and damaging thing to hear. No matter how hard things have been for me personally, I have never for one second imagining myself harming our son that way and it’s definitely not the sort of thought that should be voiced to an Autistic loved one.

However, I feel like there needs to be a recognition on the other side that for many families, having a loved one diagnosed with Autism has irrevocably altered the parents’ lives in ways that often feel painful, negative, or downright desperation inducing. I love both of my children fiercely- it is why I do what I do- but what I do is beyond difficult and it’s not what I dreamed of for myself. “I can’t…, I can’t…, I can’t…” could become the theme for this post if I let it, because there’s a long list of things other people take for granted that aren’t even options for me at present because of what is required to provide our son with the necessary level of care and support. And it is undeniable that the demands of what I do have taken a toll on my personal health. Years of going with minimal sleep to help him in the middle of the night has definitely done some damage.

Although higher functioning Autistics often refer to their neurological differences as a “superpower,” my son is almost 10 and still has the risk assessment of a kiddo under the age of 1. Some Autistics really feel unhappy about the idea that many in society have of them that they need to be “fixed.” I think that is a luxury one can have when one’s differences don’t rule out independence. I tend to think of what we are working on with Tony as skills necessary for survival within our community. Unless something dramatically changes he will be incapable of independent living. Neurological differences can lead to great strengths, or great deficits. Perhaps it’s just because I don’t have time to do a comprehensive search, but I don’t really see Autistic activists holding up Autistics with my son’s past/current behaviors or level of functioning as an example of what communities should be embracing when it comes to Autism.

Yet, I personally would love to see more level 3 Autistics getting community support. When we go out in public, we never run into other level 3 Autistics. I’m just that sort of sunflower that I push ahead with what I think needs to be done regardless of how popular I think it will be within the community, but most families don’t feel like they can embrace that mentality. And even I know and respect that there are places/settings I can’t take him into because it would be considered disrespectful enough to garner significant backlash.

I absolutely feel like we need to honor and recognize that many things in our community are not supportive for Autistic individuals. Sure, groups can respect and remove logo symbols that some deem to be a painful reminder of that. But let us also honor and recognize the difficulties that are to be had by everyone involved. No, it might not feel good to hear that a parent makes significant sacrifices to help a loved one incapable of independence and that it is incredibly hard to do at times. Sometimes the truth is hard or even painful to hear, but neither side should have to pretend like their needs and feelings don’t exist or matter. And let us also remember that many people wearing that as a symbol may not even be aware this controversy exists, and they are just trying to show love and support in their own way.

And, because I would never want to leave you with a picture that is just focused on the challenges my son has since this might be the only thing of mine you ever read, here are some pictures from recent walks and outings of ours. Everybody involved has done a lot of hard work, and he’s able to enjoy a lot more in the community than he could just six years ago. Recently he’s been developing the ability to go down ladders at parks. He wants to do it a little bit differently than what his physical therapist and I have been trying to teach him, but if he can get the job safely done, that’s all that matters.