In the Deep

~ gypsy116toast2001 ~ Leave a comment

This ocean between us

And my raft

Weaved of words as yet unspoken

Clumsy as if built by my actual hands

Frail and disconnected

Lacking coordination

And so I slip

The warm water my only embrace

And you

You don’t notice that I’m drowning

Gasping

Thrashing

Reaching out for your hand

Hoping for something solid

But grasping only air

A ghost

And I whisper to myself

Have I ever stood on dry land

Would I know it if I were to happen upon it

Should I believe that you would you meet me there

Like children

Born anew

Do you think you could hold me

See me

Would you want to

And even if you turned

Even if your eyes found mine

Would I recognize salvation

Or flinch away

Worn thin by longing

Hollowed by hope

Would I trust the shore

Or slip willingly into the deep

Cradled by the only certainty I’ve ever known

In the Name of Awareness

~ gypsy116toast2001 ~ Leave a comment

There is so much going on in the political landscape autism wise right now. I feel like I should be writing about it but the words aren’t coming. I think this is for two reasons.

1. The energy just isn’t there.

2. I don’t think I have anything unique to add to the conversation.

The message I’m seeing from all of the autistic content creators that I follow (Instagram, Facebook and YouTube) is the same and I am in agreeance.

In the name of awareness, and in case you somehow may have missed any of this… Here are some topics to Google…

The death of Victor Perez

RFK jr speech on autism “research”

National autism registry (USA)

Anything I’m missing, please let me know below.

Why You Probably Think I’m a Bad Mom, and Why I Don’t Care

~ gypsy116toast2001 ~ Leave a comment

Daddy was making a speedway run.

“Do you want anything, buddy?”

“A donut”

The donut does have sprinkles but it’s frosting? White. This is unacceptable.

I feel my son’s energy change. Watch as his face falls. Tears fill his eyes. I register his distress.

I know what comes next, so what do I do?

I fix it.

I melt chocolate chips and “frost” the donut. I douse it with sprinkles. I do all of this knowing that my son will pick off the sprinkles, leaving the rest uneaten.

I am well aware that the vast majority will see this as bad parenting. I am also aware that a good portion of the population would see my son as spoiled…a brat.

Here’s the thing, my son is PDA. My son has a nervous system disability where something as seemingly small and insignificant as the wrong frosting on a donut is registered by his nervous system as a survival threat. A threat to his very life.

I know that if I don’t allow him to complete the threat response in a way that allows him to feel a sense of safety, that threat will stay in his nervous system. These small, seemingly insignificant threats can add up to big trauma for my son and others like him.

Given the cumulative nature of the effects of these threats on my son’s nervous system, I know that before long my son will be gagging every time he eats, vomiting often, his nervous system in such a sensitive state that he cannot handle food. I will be unable to get him to bathe, possibly for months at a time. His sleep will become restless. Meltdowns will occur daily.

These “small” threats can prevent a PDAer from accessing survival needs. These threats are very real to a PDA nervous system. PDA is a nervous system disability. My son is disabled, so, yeah, I will continue to spend my days accommodating him. I will allow him to use equalizing to come back to a regulated state. Even when it looks ridiculous. No matter who believes me or who doesn’t. Even if you see me as a bad mom.

Sane Amidst Insanity

~ gypsy116toast2001 ~ Leave a comment

Sometimes I forget just how misaligned I am, my thoughts, my beliefs, with the majority of the population. Things that seem obvious to me, people often seem to have never even taken into consideration.

Once upon a time, when I was in my twenties and in therapy, my therapist said something to me along the lines of… It’s hard being the only sane person when everyone around you is crazy.

I am not saying that my thoughts and beliefs are better then everyone else’s. I can’t speak to anyone else’s truth. I can only speak to what feels right and true for myself. But yes, it does sometimes feel that way and yes, yes it is difficult.

Last night, I sent a message to said therapist. The last time I saw her was when I had just moved back from Arizona and was in the middle of what I thought at the time was a massive mental breakdown that led to my former diagnosis of borderline personality disorder. Given what I now know to be true about myself, I believe that while I was in a state of mental health crisis, it was not caused by a mental breakdown or personality disorder but deep autistic burnout and the interplay of trauma with my autistic traits.

During our last interaction, I must have said something about feeling the need to unalive myself because I remember her stating that if I did end my own life, she wanted my then husband to contact her to let her know. On the contrary, should I decide to live, she wanted me to reach out and let her know how my life was progressing. The message I sent was brief. There is so much I could say and even more that I’d probably like to but I’m not sure how to explain my life without explaining everything inside of my head. I’m still feeling sane in the midst of insanity.

I also recently received a message from a high school friend sharing her experiences with her autistic child and advice based on the wisdom her experiences have granted her. Anytime someone reaches out in an effort to help, I am absolutely bowled over with gratitude. The confirmation and validation of my belief in the basic good heartedness of most people sustains me when all evidence seems to the contrary. As welcome as this advice is, it also highlighted the sharp contrast between my experience and my beliefs with the beliefs of others.

Most often, I feel like I occupy some sort of no man’s land. My views not aligning with anyone but my self. Never quite agreeing with any of the consensus views and instead falling somewhere in the middle. Always seeing complexity where others see certainty. This can be a lonely place to live.

I often find myself face to face with the defensiveness of others. My views feeling like an attack, something to take personally, something to take offense at. The space that I occupy is not one of judgement. Do I sometimes believe that others views are wrong? Of course I do, that’s why I hold the view that I hold, it is what feels right and true to me. Just as often, I see the other view not as wrong but incomplete or just not right for me. What is right and true for you and your family is solely up to you. It is not my place to decide that for anyone or to make judgements about that decision.

As an example, my thoughts about education in this society are such that I could never, never, attend university and I will speak at length to why. My sister, on the other hand, is about to complete her Masters in social work. Do I think that she made the wrong choice and should not be attending university? Absolutely not. Not because I believe that the way education works in this country is any better for her but because I whole heartedly believe that she is meant to be a therapist. She is in perfect alignment with her path, her purpose. It does not change my views about education.

Often when people hear me talk about my views, such as these particular ones, they make the assumption that I am insulting their choice. That I an judging them for choosing to go to university (or whatever the topic may be). I am not. I may hold deep judgements about the systems of power in our society and the choices that are forced upon us but I have no judgement for the individual human making those choices.

That said, being that my beliefs are so far outside of the norm and being that I am often immovable in my stance towards those beliefs, I often fear speaking them. This may be my most fatal flaw. I will make myself small in order not to cause others discomfort. I am trying to unlearn this.

What about you? What are you trying to unlearn? Anyone relate?

Officially Autistic: Awareness vs Acceptance

~ gypsy116toast2001 ~ Leave a comment

A few days ago, on autism acceptance day (though I did not realize this until after the fact), I became officially autistic. Of course that’s not true, I was already autistic. I have always been autistic but that is how it felt. I feel like I no longer have the need to qualify the fact that I am autistic with “self diagnosed at this point…”, as if self diagnosis isn’t valid. Unfortunately though, to many it isn’t valid and even though I’ve known… I have known that I am autistic for quite some time now, claiming it felt disingenuous. Imposter syndrome is real y’all.

So…on autism acceptance day, I had my formal autism assessment and became formally autistic and now no one will ever have cause to doubt my autisticness, right? If only that were truly the case.

I will not receive my actual report for another week or so but the psychologist did tell me her thoughts on my diagnosis… C-PTSD, Autism, and ADHD. She also mentioned dissociation, alexithymia and giftedness. When my mom asked what the psychologist had said, that is what I told her… C-PTSD, autism, ADHD… And my mom said ” you don’t have any of those”. The following day when I asked my dad if Mom had told him that both my son and I had received an autism diagnosis, he replied “yeah, she said you said that” and walked out of the room. So, yeah, there’s that.

Being that April is autism month, I’ve seen so much debate over whether that should be qualified with awareness or acceptance, i.e. autism acceptance month or autism awareness month. I agree that acceptance is important. Awareness speaks of just that, an awareness that we exist, while acceptance speaks to accomodation, it speaks to change, it speaks to the possibility of inclusion, the possibility of healing but…. As much as acceptance is needed, we, as a society aren’t ready to drop the need for awareness just yet.

It isn’t that my parents (and most people including countless doctors and even professionals supposedly qualified to diagnose autism) think that I’m (and so many others are) not autistic because they’re just being assholes (although, I am aware that that can be a problem with some people too). They aren’t able to believe me because of a fundamental societal misunderstanding about what autism is and the myriad ways that it can present. This is a problem of lack of accurate information and education.

I want to say that it’s amazing that it took 44 years for me to receive an accurate diagnosis. I want to say that my differences have been apparent my entire life and it’s amazing that I went under the radar for so long. The truth is though, it isn’t amazing and I didn’t go under the radar. Instead, I collected mental health diagnoses like clothing that didn’t quite fit, that sat as clutter in the closet of my mind.

I’ve been viewed as sick and broken my entire life, so… I lived as if I were sick and broken and in need of fixing. Try to fix myself, I did. I dedicated my life to fixing myself. I suppressed all of the parts of myself that were natural and easy and authentic. All of the parts that I like about myself. The parts that make me me. All in the name of fixing myself. I fixed myself until my self was completely gone and all that was left was actual sickness, brokenness. This is why I’ll argue that both awareness and acceptance are equally important. Without awareness, there can be no acceptance. Unfortunately, as a society we are woefully unaware.

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.

Trigger warning…or the one where I say some version of molested 10 timesšŸ¤·

~ gypsy116toast2001 ~ Leave a comment

I have a question for any of you out there that are writers. Do you ever read something and then not be able to stop yourself from writing in a style similar to the author that you are currently reading?

I just read Let’s Pretend this Never Happened, and am currently reading Furiously Happy, both by Jenny Lawson. Jenny is a blogger who writes about her life in an honest but humorous way and her books continue in that style.

I woke up the other morning, my brain in full on writing mode. It seems I was writing a passage for my book, only problem is that I’m not sure the voice that I was writing in will fit the tone of the book. It was coming out in a semi sarcastic humorous tone…thanks Jenny. Does this happen to anyone else? Like it’s this just a me thing? An autism thing? Or, like an everybody thing?

I’m going to include what I wrote below because I don’t think I’ll be able to use it in the book (and if I do, you get a freebie). I’d like your opinion? Is this too…I don’t know sarcastic/humorous as compared to any of my writing that you have read (if you have read any)? Would it stand out and/or be distracting if it is?

Trigger warning… The topic is sexual abuse, though no abuse is described, only alluded to. I apologize in advance for the many, many times I use the word molested or any of it’s derivativesšŸ¤·

“There has been some controversy around whether or not I may or may not have been molested as a child, and by controversy, I mean that I am the only person who doubts it.. Ok, so here’s the rundown..my subconscious started knocking when I was in my earlyish twenties and was like, hey, guess what? You were molested when you were little and I was like, what? No. No, I was not. That’s not possible. Who could possibility have molested me? And my subconscious was like, grandpa and uncle (insert name here), and I was all like ok, no, that’s crazy, and stopped thinking about it until about a decade later my subconscious again started knocking. Knock knock knock, hello, you were molested.

At that point I started asking questions and turns out that both my grandpa and uncle are confirmed child molesters. How did I know? Is my intuition so good that I just picked up on the molesty vibes? Perhaps I overheard someone talking about it (even though my mom didn’t even know until after my subconscious began angrily knocking)? Or, is it like everyone in the family except for myself accepts, and I actually was molested as a child, likely by both my grandpa and my uncle? Who knows ? I’m really not sure even though, again, I seem to be the only one who isn’t.

Even as my family members call me crazy and scapegoat me, placing the responsibility for any family dysfunction squarely on the shoulders of myself (and my sister for daring to support the molestees as opposed to the molesters), they’re all yeah, of course you were molested but aren’t you over that yet? It’s not like anyone has apologized or even acknowledged the pain this may have caused you in any way but damn, go read a Bible or pray or something (look, look, look at that molester praying away, and they pat him on the back lovingly before turning to glare in my direction).”

Educated

~ gypsy116toast2001 ~ Leave a comment

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.