chronic illness

Congratulations, he’s autistic… You wanted support? There is none

~ gypsy116toast2001 ~ Leave a comment

Last night, I dreamt that I had breast cancer. The message in this dream was very clear and the same message I have received in various forms over the past few years. I need to focus my time and energy on myself, on the things that regulate me, if I am to survive. I’m order to do that, I need more support.

This past week, after searching for almost two years, my son finally had his autism assessment. In case you are not aware, it is ridiculously difficult to find a professional capable of accurately diagnosing autism if you don’t fit the current stereotypes, i.e. you can make eye contact, are empathetic, or “too” social…PDA adults and children are notoriously hard to diagnose.

The assessment itself went well. The psychologist spent the majority of the time talking to me, asking me questions. The rest was spent asking my son questions while she watched him play. While the whole thing was dysregulating for my son, he did really well and was able to engage as needed.

I won’t receive the report for the assessment until I’ve fully paid for said assessment (a few months) but the psychologist indicated that she agreed with my evaluation of my son, that he is autistic with a PDA profile. She then began a bit of an explanation of the report that I will receive and asked a few questions about my indicating that I was hoping for recommendations for support.

On one of the forms that I had filled out prior to the assessment, I explained that I was looking for recommendations for therapists that are able to work with PDA children. Due to the nature of the PDA nervous system, most therapies recommended for autistic children are not appropriate for a PDAer, they only make things worse as they threaten the child’s autonomy. I’m in need of support. Are there ways that I can better support my son with eating? Potty training? And possibly more importantly, if the information about how to best accommodate my son is coming from a professional and not myself, I feel it will be better received by the other adults in my household and that would hopefully lead to more support for both my son and myself.

The response from the psychologist? I’m sorry, I know this is not what you want to hear but there really isn’t any support. There aren’t any local therapists that are able to work with a PDA child in an appropriate and Neurodiversity affirming manner. She said that she will double check with her boss but…šŸ˜¬šŸ¤· Her recommendation was to find a good therapist for myself (have one) and join online support groups (already joined). I don’t think I even need to explain how fucked up this is. So, not only am I not receiving enough support in my personal life… Everyone who supports me is tapped out themselves, they need more support. But also, there is no support available on a professional level?

This blog is not incomplete because I don’t have the desire to work on it. It has been under construction for over two years because I lack the time and energy. Between my illness and my son, there is nothing left. Even as I write this now, I’m sitting in the bath tub, stealing time from my very important for my healing meditation routine. If we aren’t able to look to the so called experts for help with our children’s (or our own) disabilities, where are we meant to turn? If society is set up in a way that drains us all so that we are not able to support each other, what then?

My hope is that with spring and summer coming, and my son’s love of gardening, I will soon have more space and time. But what about when winter rolls around again? This is not sustainable. Not for myself and not for so many others. What are your opinions? How can we form community that allows for mutual support? What ways are we able to lessen the load on ourselves and others as is? As always, comment below.

Educated

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I just finished reading Educated by Tara Westover. I’m not really going to review the book, other than to say that it is well written, and interesting. I would have liked more description of emotion but as we’ve discussed before, that’s a me thing. The book is good. I would recommend it. I don’t actually want to talk about the book though. I want to talk about the thoughts the book inspired.

Towards the end she, Tara, has a conversation with her mother where she felt seen, finally. Without getting to deeply into the story (I don’t want to spoil anything), this conversation sparked an internal shift in Tara. Upon reflection, she realized that the shame she had carried throughout her life wasn’t about her life circumstances, it had much more to do with the messages she received about herself, her worth, her identity, through her parents words and actions. Their refusal to accept her for the whole and unique person that she is.

This got me thinking about the weight we carry as parents. The responsibility that we have to our children. And the almost hypnotic power our parents tend to still have over us as adults. I’m not sure we ever fully get out from underneath those wounds.

The chances of my own mother ever fully seeing and accepting me as I am is near zero. I’ve accepted that and that I have to be that source of acceptance and validation for myself. I was going to write that I’m not sure I know how to do that, but no, I am sure that I do not. It’s something that I struggle with constantly and I’m sure will to some degree all of my life.

How, knowing the affect our parents have had on us, do we go about parenting our own children? I understand that it isn’t possible to not cause your child any damage, but I definitely would like to minimize any negative affect my unhealed parts have on my son and maximize the affect of the opposite.

I don’t know. I’m struggling here.

As I’ve talked about before, my son is autistic, PDA profile. I’ve finally (after about two years of searching) found someone who should be able to accurately assess him that I can afford. My hope is that she will be able to recommend appropriate support. Even with support, I’m having a hard time seeing how I can find balance in my life. Balance between his needs and my own.

I’ve recently seen a few videos about a study done on the effects of parenting a PDA child on the parents (link to first video in the series) and I received this comment, “PDA tends to be the hardest parenting, a 110% job”, when emailing about my son’s upcoming assessment. Both of these things were highly validating.

I’m not going to sit here and complain. I am so grateful for my son. It took me twenty years to get him (long story, I’ll save that for another day). He is my miracle and I love him so much. But…In this society, with the lack of support given to any and all parents, how are we meant to not only survive but thrive as parents? To give our children the best of ourselves so that we can stop passing down these old wounds that no longer serve anyone? Please, comment with your thoughts and experiences.

Through Community

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I had a dream. It was a few years back and in this dream an angel came to me. This angel told me that if I did not heal I would die young but that I wasn’t meant to. That I needed to accept help, that my healing world require help from others. The angel also said money would be involved but not too worry about that.

Because of the money part of the equation, I had assumed that the help was meant to come from those in the helping professions. While I do still think that’s partly true, I know that isn’t the only help that was meant. Balance is a constant struggle and I require assistance from those around me, both because there are things that I’m not capable of doing for myself and because the little energy I have is needed in my healing process itself. I know I’m not alone in this experience.

So, what do you do when your caregivers are at the end of their rope? When either their life is full with their own tasks of daily living or they overextend themselves trying to help others who may or may not be their responsibility? What do you do?

I can’t speak for others but I feel a tremendous amount of guilt. It is not my fault that I am sick and I am doing my level best to heal but I feel like a burden and there is truth in that. My loved ones will deny that, over and over, but in truth, whether we want to use the word burden or not, my existence causes a hardship for those around me. It does.

Caregiver burnout exists. Mistreatment and/or abuse by caregivers exists. These things are commonplace and as deeply personal as this reality is for me it is not a me problem. This is a societal problem. Any system that requires it’s participants give their all to and rely solely upon it is doomed to fail. We know this. I don’t pretend to have the answer but what I do know is that we are human. We are mammals. We are pack animals. We survive through tribe. Through pack. Through clan, group, family. We survive through community. What ways can we begin to slowly bring our centers back into community? I’d love to hear your thoughts.

Trauma is Wild

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Woah. I’m sitting in my bathtub, brushing my hair while it has conditioner in it and I’m listening to music. A song starts playing that reminds of a very unstable time in my life, both because of content and the fact that I would have listened to it back then. Unstable more in a relationship way then a just me off the rails type of way.

Anyway, I’m listening and I’m singing and I’m overcome by a feeling if nostalgia. Like I am literally experiencing a longing for that time. Now, there were definitely good times then, life is complex, it’s never all bad but … That is not what I’m feeling longing for. There is some part of me that misses the intensity, the drama of that life. WTF? Trauma is wild.

Having been sick for so long, I’m not surprised by the feeling of missing a time where I felt much more alive. I also had better access to my emotions at that time. Like a lot of people, in attempting to heal my emotional instability, I’ve swung too far in the opposite direction, I’m all bound up. I’m aware of this. I’m working on it. It is interesting that this part isn’t longing for a future where I can feel my feels in a healthy manner but instead a past that was intensely painful. Huh? I think I may need to do some inquiring as to the needs of that part of me. Interesting.

Confessional

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I have a confession to make. I love my son, like more than I could ever possibly describe. He is my everything, but… Right now…I do not want to Mom, like, at all. And that my dear friends, is causing me to feel like a massive piece of shit human.

Here’s the deal, my recent life circumstances made it impossible for me to care for him in the way that I normally would. Thank everything holy, his dad was able to step in and fill the role that is and has been since my son’s birth, mine. The role of primary parent.

The part of me that feels like a massive piece of shit human wants to tell you that I got used to having less responsibility and I don’t want to give it up. The part of me that loves to beat myself up for everything, even the things out of my control, wants to hang it’s (my…our?) head and wallow in shame, calling myself selfish, self centered, lazy, uncaring, heartless, bad bad bad… Bad mom. The truth, I think, is more complicated.

I have, since my son was born, as is my tendency, given too much of myself. I, mostly on my own and chronically ill, attachment/gentle parent an autistic, PDA child. If you don’t understand what that means, I took the hard road without near enough support, in a broken body, with a child who is “extra”.

Looking back, I would not change the decisions that I made in my choices of how to parent but…I was burnt the fuck out before life just knocked me on my ass. *Sigh*. On top of that, the ass kicking that the universe just bestowed upon me, made a couple of things very clear to me. If I want to heal, I have to put myself first. I have to engage in the activities that bring me joy, peace, and help me to process. I have to invest time in my healing. I don’t get to just half ass try and fit healing tools in on the sly when I steal a moment alone. I HAVE TO. If not, my son won’t have a mom at all.

I wrote recently about how I healed the first time that I had a run in with chronic illness. On my own, in a safe space for the first time in my life, I spent my time learning what I needed (that’s key, what I actually needed) and immersing myself in those routines/activities. This is how I became regulated. This is how I healed.

I’m in a tough spot right now. My son’s father will be returning to work soon. I will have to go back to full time primary parent. And this is where I feel like a selfish asshole. I don’t want to. I feel resentful about it. I think that that actually makes sense though and it definitely doesn’t mean that I am a horrible person or mom. It means that I need to focus on healing and I an unsure of how to navigate this. How is it possible to find balance? It means that I’m scared, terrified really. What if I lose the gains that I’ve made? What if I’m unable to heal I’m this circumstance? What if, and I think this is my biggest fear, what if I don’t make it? And by that, I mean, I either become fully incapacitated or I lose my life and… The part of that that kicks me in the teeth, rips my guts out, stabs me straight through the fucking heart..my son doesn’t have his mom.

I feel like I need to be selfish temporarily,in order to ever truly be what he needs. Pray for me. Send me love. All the good things that might help me to figure out this balance. Or advice? Leave a comment below.

Realization…unmasking as the key to healing

~ gypsy116toast2001 ~ 1 Comment

I’ve just had a realization.

I’ve been sick for almost 12 years but this is not my first run in with chronic illness. I was sick first, when I was about 19. I was only sick for a year or two and while debilitating, I was not as sick as I have been this time.

The causes of chronic illness, in general, are complex. My situation is no different and I’m not going to go into all of that in this post. What I do want to talk about is my “recovery”.

At the time, I attributed my healing to diet changes. Other than rest forced by the illness and a few supplements (I can’t remember any specifics other than a prenatal multivitamin. That was my doctor’s advice. Rest, take a prenatal and, you know, don’t be stressed). If you’ve read any of my recent posts, you know that I am doing Primal Trust, and that I believe nervous system regulation to be key to healing. Not that I think the diet changes and supplements had nothing to do with my healing, I am positive that they contributed but… What I just realized, is that it was nervous system regulation that was the key.

This… This all comes back to me being undiagnosed autistic. At the time of my healing, I was no longer in school and had just moved into my own house. My ex husband and I were in the best place, relationship wise that we ever were. And I… I had a lot of space to experiment with just being myself. I, my dear readers, was unmasked for the first and dare I say, only time in my life.

My days were spent doing as I pleased with no fear of repercussion. I got up, took a bath, exercised (as I became able), sang (I’ve recently realized that this is my biggest stim), danced… I spent all of my time with my animals or with my then husband, who, at the time, I trusted. At night, we watched movies and I engaged in my special interests.

This is not a life that is supported by the society that we live in but it is a life ideally suited to me. Add in abundant time in nature (which hey, guess what? I had my own home with a pool, I was out in the back yard a lot in the summer) and I’m in heaven. Of course I was regulated. Of course this was the only time in my life that I’ve ever felt truly healthy.

My task then, (and this really is THE task of all neurodivergent folks (and honestly, of all people, it’s just that it comes glaringly into focus for those of us whose needs are further outside of the societal norms), isn’t it?) is to find a way to build a life that suits me within the confines of this oppressive society (all the while, attempting to effect change in any was possible). A life that prizes space and creativity and regulating movement/sound and nature and deep deep dives into the topics that feed my soul…

This is no small task. All the more reason to keep talking about our needs as autistic humans. This is integral to our health, to our very existence. This is essential to a healthy society as a whole.

Those Parts Lost Along the Way

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I’m watching the documentary Strip Down, Rise Up on Netflix. I’ve only just started it, so I don’t really have an opinion on the documentary itself as of yet. It’s about a woman who teaches pole dance. She teaches women to pole dance in order to bring them back into their bodies, back to themselves. Reconnecting with their bodies, opening themselves to vulnerability, processing trauma and reawakening their feminine essence.

Oh, it’s bringing up feelings of longing in me. I miss dancing. I miss moving my body, like at all (I currently have almost zero exercise tolerance and it’s been this way for over a decade), but in this moment, especially that way. The slow, sensual, in touch with yourself way.

I’m thinking about it and back in my stripping days, I don’t think I was ever really dancing for the customers. If, by chance I did happen to try, I’m guessing it wasn’t my best work. I started dancing for myself at home. I would put on my boots (yep, the kind with the statuesque heels) and dance in front of a mirror, in my undies, for myself.

This remained my method, even in a club full of people. Internal. Connecting with myself. My sensuality. My sexuality. Me. And, in my opinion, that’s hot as fuckšŸ¤· I miss that. I’m looking forward to getting it back. This, among other parts of myself that have gone missing in the duration of this illness. I’m healing. I believe that. No matter the extent of my physical healing, I will find a way to reclaim those parts of me lost along the way.

Art, like beauty, is in the eye of the beholder

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The other day, I wrote of feeling creatively stifled. I wrote about how a situation in my life feels too sensitive to speak about publicly at this point, too raw, too vulnerable (which, by the way, I’ve decided that that situation will go in my book. I’ve planned on writing a memoir for like ever but I get too overwhelmed whenever I think about it. Ideas are coalescing. It will happen.) Anyway, this got me thinking about another way that I feel stifled in the creativity department.

I used to make, what I can only call, selfie art. I would edit selfies in a way that transmuted emotion. In the same way that I use drawing to process and purge myself of emotion, I edited my photos in way that enhanced the emotional experience of said photo.

Like any public art form, I had my fans and of course, my haters. I received criticism for using selfies as an art form. Apparently they can’t be art (bitch, anything can be art. Art, like beauty, is in the eye of the beholder). For posing provocatively (it’s my body, I’ll do with it as I please. Don’t like it, don’t look), and, among other things, being too thin (why people think it’s ok to comment on other bodies is beyond me).

Along with the criticisms of my weight came one comment from a woman who was in her words “fat”. Her claim was that I only shared my photos for attention. That I was only able to do so because of the shape of my body and that I would not do it if I were overweight.

Like all criticism that comes from a place of complete misunderstanding of my intentions, the comment irritated me. My photos, for me, encompassed a wide range of emotion. Some were joyous , and some sensual but the overwhelming majority were expressing the so called “negative” emotions…anger, sadness, abject despair.

Did I feel good about myself in some of my photos? Hell yes, and I don’t see anything wrong with that. I spent years hating myself, that self love was hard fought and well earned (and why is it so horrible for someone to like the way that look? Again, I don’t get it). Again, though, most were a purge of the darkness inside of me. Most were edited in a way that highlighted my flaws. They were intended to make me look “ugly”. The insinuation that I was only sharing for the sake of vanity felt so completely off the mark and I felt, like most of my life, wholly misunderstood.

Here’s the thing, she wasn’t completely wrong. I do not make selfie art anymore. The reason is because I am not currently a fan of my body. Pregnancy + mold toxicity has equalled a lot of weight gain. That said, I didn’t stop making them because I can no longer solicit a response that appeals to my vanity (there is shame around my weight but that’s a whole nother issue). I stopped making selfie art because, for me, “fat” doesn’t translate into the emotions that I need to process and express. What does? Bones. I was very thin at the time I made those photos (underweight actually. Again, illness related. I don’t choose which way it throws me.. under…over…. It’s all illness), and my body was my perfect canvas.

I miss creating selfie art. I am a huge fan of emotional photography. I often see images in life around me and wish I could capture what my eyes see, but nothing works for me in the way that my body did. It just doesn’t.

That said, I did create a few photos of my son the other day. I don’t usually share him in a public forum but I’m making an exception.

Creative Energy

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I hadn’t drawn in 5 years. I was drawing frequently, almost daily, when I got pregnant with my son. Shortly after I found out that I was pregnant, I got really sick. I wasn’t physically able to draw… And then I had an infant and then a toddler…What I was drawing at the time never got finished.

I’ve felt the need to process some emotions recently and because I’ve had a bit of space, I decided to get myself some drawing pencils and get back into it.

Yesterday, I mentioned that I’ve been doing Primal Trust. Dr. Cat makes it clear that when starting the program, you may feel worse before you feel better. You may have an increase in symptoms, more anxiety, insomnia… While I am already feeling somewhat better, I’m definitely experiencing some of that.

I’ve had a slight increase in energy. When I say slight, I mean that I still have virtually no energy. I can not do much but I can feel the difference. What I do have though, is an abundance of creative energy…. But not enough physical energy to express it all. It’s uncomfortable to say the least, but as I understand it, a good thing. Healing is happening. Things are moving.

Anyway, I guess all of that was just to say, I may be sharing more…more posts, more drawings, more who knows what … We shall seešŸ¤·

This is What Healing Looks Like

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I started Primal Trust a few weeks ago. For anyone that doesn’t know, Primal Trust is a nervous system regulation program. The program talks a lot about the importance of being present. In this moment, here and now, and being ok, no matter what this moment holds. It also speaks to the importance of not constantly scanning the body for symptoms and being in a perpetual state of fix it.

I’ve not yet started the section with the actual tools and I already feel like it’s helping immensely. I was able to go out and “spray for spiders” with my son today. It completely wiped me but… I have not been able to do it since the beginning of this summer.

I mentioned that I got a heart monitor, yesterday. Without going into too much detail, I’m feeling like it is less likely they the issue is with my heart than I was last week. Either way, I am feeling much more confident in my body’s ability to heal. The heart monitor feels like more of a formality at this point. That hasn’t stopped my mind from obsessing and delving into perfectionism.

Yesterday, I felt almost panicked. I felt like I needed to log every single symptom. What time was it exactly? How long did it last… exactly? Did I get all of the symptoms, every way that they expressed?

I don’t want that. It’s taking me out of the moment and putting too much focus on my symptoms. I’m finding this to be very good practice for Primal Trust. Can I feel ok with not being perfect? With the anxiety over wanting to be perfect present? Turns out I can. And maybe this is what healing looks like šŸ¤·