Monthly Archives: December 2021

What is it about me?

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Recently someone who, about two decades ago, asked to be my Leather mom tried to friend me on facebook. I actually unfriended her about six months ago because I was weak when she came around a year or so ago when I filled out my facebook profile more and included California people. I unfriended her because when I see her posts about how terribly she misses her daughter and how the lockdown was traumatizing to her because she can’t see her baby it cuts like a knife. It jumps up and down on my old buttons about how other people deserve to be loved and I don’t. So instead of being an asshole I just unfriended her.

I uhm was not as nice this time around. Instead of ghosting her I let her know (with a fair few words) just how much she hurt me and that continuing to stand near her at this point makes me think about killing myself and I just can’t do that anymore. She responded with ethos and just how broken she is now and an attempt to gain sympathy and support from my end. I am not going to respond. Because if I did it would be something hostile about how she fucking dumped me years before her partner died so if she is broken in the aftermath of his loss I don’t fucking care anymore.

This is like my mother expecting me to start handling all of her financial needs when I was 18 and I got the accident settlement. She didn’t really raise me–a whole series of foster placements kept me fed and clothed and not homeless. But hey I owe her because she is so needy and she’s my mother. Naw. Fuck off.

Many years ago now my Leather Dad told me that he’d be happy to let my kids call him grandpa but I needed to keep in mind that he wasn’t going to do anything to help me because all of his money and support and property was going to his kids. Then a couple years after that he asked to borrow $10,000. We worked out a loan agreement and I gave it to him and he paid me back. Then he came back asking to borrow $25,000. For someone who was absolutely fucking clear that he wouldn’t help me he sure expected me to help him. I said no the second time.

I talked to a good friend about how they are the only person Sarah has lived with who Sarah doesn’t owe money because they didn’t charge Sarah rent. When Sarah broke up with me she had effectively stolen money from me; it was put in an account to buy groceries for the family. A couple weeks later she had a plane ticket to see her sister’s graduation and she needed more money for groceries. This was never really discussed because if I got angry with her then she would tell me I have Borderline Personality Disorder and she can’t deal with me because I am triggering because I am just like her mother.

They say that extreme independence is a sign of trauma and it’s not a good thing. I’m told that me being a bit on edge and not 100% trusting Noah means I shouldn’t be married to him because I am being abusive to him. Basically what that means is because I am a traumatized person I should be alone for the rest of my life–hey independence!

For reasons I don’t really understand he thinks that having this much of me is better than having none of me.

Recently I read something that I found interesting: The Unified Cutlery Theory. I feel like over the last two months I managed to turn the corner and all I have are knives. I posted a while ago about doing well and I think that was a stupid thing to do. I burst my bubble.

An affirming phone call

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I want to write this down so that in the future I can remember this feeling. I talked to a buddy in town yesterday; she works in special education in an autism class. This is sometimes complicated for her because her training is entirely in language teaching (usually foreign language to mainstream kids) but this was the job she could get around here. She has been given very little additional training/teaching so she is figuring it out as she goes and reading books on her own to help her in her job. Also worth mentioning that her daughter is Middle Child’s best friend.

We talked a lot about what I’m seeing and what I’m trying to figure out with regard to helping MC. We talked about the areas of severe academic delay (specifically: MC is effectively reading about 4 years below grade level and writing 5-6 grades below level) and the complications that occurred in the classroom when MC attempted to go two years ago. We talked about dynamics in our house around chores/getting stuff done.

She was very clear that she didn’t have a lot of specific advice but she was a sympathetic ear and she talked through her experiences working with families in her classroom. She understands why I am not super keen on pushing more in the direction of the National Autistic Society help and why I have the worries I have. I talked about Auntie who is in her 80’s and has her three adult children living with her because none of them can take care of themselves and live independently. I talked about my brother Tommy and the way he physically abused his entire family and why the tantrums/violent outbursts are so triggering for me.

Side note: in the past couple of weeks it has come to my attention that pretty much all of the friends I have met here have basically no idea that I have/had siblings and they know nothing about my traumatic family background. I made a couple of comments recently in context in conversations in completely different groups and they all responded with extreme shock and complete surprise. “How have I been talking to you for this long and I had no idea any of this happened?” Well… I don’t trauma dump anymore. I don’t share my mental state by and large with newer friends here. It isn’t relevant to mention any of these things if I’m not going to talk about anxiety/depression/trauma. So I don’t. This is part of my strong feeling that I am never again going to make a close friend where I talk about the really hard stuff. I will have surface friends and basically shut the fuck up about my brain going forward. It’s not safe to talk about. I can no longer absorb the consequences of being honest.

But I do sometimes need to talk about educational stuff and I need some amount of support around that. We talked about classroom strategies that she uses and how functional/useful they are for my child. We talked about the possibility of Youngest Child going into school here and the likely outcomes of that.

It is her professional opinion after working in special ed in local schools for several years that my children really are better off at home. The resources are thin on the ground and are only available for the most extreme cases. MC has already been on a waiting list for assessment for over two years and it could be another year or more before they are seen. YC would be looking at four or more years given how the waiting list has expanded over the past two years and possibly more like six years. The resources for private assessment are many hours away and their waiting lists are closed because they will not be able to get through any additional patients any year soon and they don’t want to have a waiting list that goes beyond two years. When they do reopen their waiting lists they will have a strong preference for siblings of children already in their system. Even if/when my children managed to be assessed there are very few resources available for kids at their levels. (She knows my family and is comfortable stating that.) Autism resources are only available for kids at the most extreme/non-verbal end. AHDH resources are pretty much limited to medication or being taken out of a mainstream classroom and not taught much. Other Pervasive Non-Verbal Learning Disorders are pretty much ignored entirely.

She and I have had many a chat over the years about our classroom experiences with special needs and the differences between what is given to 504/IEP kids in the bay area and what is available here. She contrasts this with what is given in her native (other European non-English speaking country that I won’t name for a vague gesture in the name of privacy) country and she is of the opinion that my level of training is higher than any co-worker she has ever worked with. She thinks American understanding of education and specifically special education for disabled kids is head and shoulders higher than anything available in Europe. She is stunned by the sheer variety and kinds of books I have read in order to be a more appropriate teacher for my children. I had previously mostly focused on the ADHD/dyslexia/general atypical neurodevelopmental needs reading stuff in conversations with her.

We shared the perspective that there is a very careful balance with special needs/disabled children and adults between giving them the help they need and enabling/infantilizing them to the point where they fail to learn skills that would allow them to be more independent as adults. When you are in the family you lack the objectivity to see the larger arc and how your actions are impacting your family. When you are in the classroom/an outside observer you lack the ability to see all the nuances and decisions that are creating the entire situation so you are ignorant of the full reasoning behind what is happening and whether it is necessary or not. We talked about how difficult it is for parents to hold the line and insist on many of the pieces of development that work towards independence because fighting every battle all day long is exhausting.

Then I said “And I get to be the parent and the teacher and be with my children for nearly all of their waking hours! It’s great!” She kinda choked for a minute and then gushed about how amazing it is that I do what I do with my kids because she sees the results and she sees us interact and man do I keep it together.

That was so fucking validating. She hosts MC for sleepovers pretty regularly. Her daughter is an only child and she’s pretty happy to have a friend over quite a bit. Her daughter has other local friends but has an easier time with MC than with a lot of the kids from school because my buddy and I have fairly similar perspectives on manners and appropriate ways to interact. Because of the one on one social dynamic and the fact that MC is highly motivated to be liked by people outside the family MC really shines in these visits as they get to show off their pride in being able to help with household chores and how to speak with people.

It’s really fascinating seeing how my personality plus my parenting techniques interact with my childrens’ personalities and needs. MC has a very strong basic need for control and a lot of anxiety around demands being made of them. However they have been raised in a 24/7 environment where there are very specific high standards about how we talk to one another and “we are workers, not shirkers” is the family motto so they have adapted their need to not be directed in somewhat surprising ways. The PDA profile fits them to a T and I can go down the list explaining all the ways they resist/avoid work… yet they still manage to do a significant amount of work because of the desire to be a “good citizen of the household”. It’s complicated/complex.

MC has very much internalized that a lot of the ways I am strict/intense in my demands are because of my internal terror that I will fail them as a parent and they love me; this makes them spotty in how they learn and follow through on what I ask but there is this undercurrent of wanting to try. They may take 6 fucking hours to sweep the kitchen most of the time because it is not ok with them on an internal level that they are being told to sweep the kitchen but when they go to someone else’s house and they want to show off they can do it in 5 minutes and tell their little friend all the specific tricks that make it easier/faster because they get to feel like a teacher and they fucking love that.

Hunh. I just had a thought. I kind of wonder if MC is going to finally be interested in learning to write when they get to feel like they are showing YC.

It is quite a challenge to get them to practice reading out loud to me but they do love to do it with YC. When they babysit (more like “mother’s helper” because everyone else is in the house but distracted with video calls or taking a bath) they do a lot of reading/talking about learning. Very much “Having someone read to you is the best…. let me show you.” So much of my teaching approach relies on careful observation and figuring out how to turn my kids personalities to my advantage. That and one to one teaching gives a level of intimacy that simply cannot be matched in a larger classroom. That is not a slam on classroom teachers in any way. I was not as good of a teacher to anyone in particular when I had 150 students. I did my best and it wasn’t what I can give my children.

I feel so much insecurity and anxiety about whether or not what I can give is good enough. I worry so much about letting my children down. It does so much to increase my confidence when I can periodically touch base with another teacher/educator and I can go through my approach and methodology. I do have a fairly extensive education when it comes to child development and what different special needs entail. I have worked very hard on understanding theory.

Towards the end of the call I said, “Something I am very conscious of with regards to my teaching and parenting is that I literally have more will and force of personality than most people. If I believe I am doing the right thing it doesn’t really matter how hard it is or how much time it takes I will do it. It is part of how my brain acts out hyperfocus. When I feel secure that I’m doing the right thing I have just about unlimited energy. I know that if my children were in a classroom they would lose out on that for a big part of their educational support because teachers by and large don’t have that intensity for a myriad of appropriate and healthy reasons. My kids do have special needs and I knew they would before they were born and I am fully committed to doing whatever I have to do to meet them. It is just hard and scary when I feel like I am flailing and I don’t know what to do.” She said that matches what she sees and my kids are lucky to have me.

I feel a lot better after the phone call. I do cycle through novelty. I do renegotiate how things are taught and what things are taught. I do hold the line on “You have to learn a basic level of functionality in order to be an independent adult and we are going to get you there.” I do push/encourage my children through learning and growing in ways that overall result in them liking themselves the vast majority of the time. Even when my kids struggle with anxiety there are usually pretty obvious organic/social reasons that I am not directly to blame for (obviously with the exception of genetics). I am not mean to my kids. I don’t beat them down. They are pretty happy and healthy and secure. Even when they are struggling for a while it is usually in ways that are predictable and appropriate developmentally and I help them pivot towards the path they want to be on.

I am not the shitty parent I sometimes fear I am. I am not perfect because there is no such thing. I do pretty well though. I refuse to stop learning and growing and increasing my ability to meet their needs. When I fail for a while I use that as motivation to push through towards a deeper level of understanding so I can better succeed as their needs change as they grow.

Part of the modeling I want to do for my children is showing that these periods of disequilibrium mean that you keep trying and learning and growing. You don’t give up and declare yourself a failure. As long as you are alive you have the chance to keep growing. Don’t give up on yourself. If we aren’t going to meet my personal goal of having my kids basically ready for complete auto-didact learning to finish the growth necessary for adulthood by 13 that doesn’t mean you can’t hit that mark by 15 or 18. It’s ok that you need the growth curve you need instead of the growth curve I had in my head as ideal. That is not a failure. It is a miscalibration and we’ll just keep going.

Frankly the way that MC needs to reassess every few months and needs a tremendous amount of novelty in order to keep doing things… looks like how I have managed my adult life. I go through intense bursts of focus in different areas. I have to restructure chores and tasks and hobbies regularly or I burn out. You know what? I’m not a failure. I do cool stuff.

MC will too.

Maybe that’s it?

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It’s not a secret that I have long had struggles with my middle child. I adore them and love them and worry a lot about whether or not I am doing the right things for them. I tried to get them evaluated by Stanford before we left California and they got a 15 minute yes/no questionnaire that wasn’t at all useful for data on understanding them. I was frankly pissed off. When they enrolled in school here after a month the school asked for permission to refer them for extensive neurological testing because something is going on. We’ve now been on that waiting list for a bit over two years and every sign points to the likelihood of it being another two years before we get answers. But kiddo is rapidly running into puberty when everything is going to get exponentially harder. My window for effecting major change is closing.

Due to all of that I’ve been doing more research. I am heading in the direction of Pathological Demand Avoidance. (Sometimes referred to as Excessive Demand Avoidance because pathological has a bad reputation. I mean… the definition isn’t awful. The word seems appropriate. I get that colloquial associations can be complicated.) It’s not really diagnosed in the states, this is a UK recognized syndrome. But holy shit when you read up on it: https://www.childrenandfamilyhealthdevon.nhs.uk/wp-content/uploads/2020/05/pathological-demand-avoidance.pdf Oh. That’s my baby. I read it and felt strong recognition. I showed it to Noah and he could illustrate each section with repetitive conversations we’ve had in the past. I read it to kiddo and they said, “Oh wow. That sounds like me.” So whether or not we ever get to an official diagnosis we are treating that like Plan A going forward at this stage.

This has some potentially wide ranging implications for the future. How we home educate needs to change pretty broadly because neither of us can handle more years of crying all the time from frustration that they just won’t fucking do as I tell them to do. We need to find new strategies for figuring out how to get stuff done together and separately. And frankly my plan had been to use our investment money till we die and have the will put everything left towards charities. That may… not really be an option if my kids are not going to be 100% able to support themselves and work. I’m still in the preliminary stage of course but I’m looking into stuff written by adults with PDA and mostly they are not independent and able to work.

(Very briefly if you don’t want to read the whole description on that web page: Pathological Demand Avoidance is very related to autism but there is no certainty whether it does or does not fall under the Autism Spectrum Disorder label. It has enough specific quirks around sociability that it seems to be related but not the same. It is a syndrome where anxiety is the dominant part of the difficulty and the stress of being told what to do is so intense one shuts down. By golly if that doesn’t describe my baby. I’ve been saying for years that when they have a list of things to do the most likely way for them to spend the day is staring at a blank wall, numb. Or huge violent tantrums. It’s a wild card sort of option.

I don’t say any of this to complain, criticize, or put them down. I am looking to understand better so I can figure out how I need to change my parenting so my child can have the maximum level of mental health and support available. If this is what is going on I want to see what needs to happen so they can thrive not so I can figure out which levers to pull to make them change. They are who they are. I accept them and love them. But I have clearly not been handling things in the best way and it’s a problem and it needs to change. We both feel bad a lot of the time and I believe with my whole heart it doesn’t need to be that way.

We are both smart. If we understand what direction we need to head in we will figure it out. One of the ways I am that I believe verifies my own autism diagnosis/autistic personality is that I need to have a set of rules/labels that tells me how to behave or I flail and I experience a fair bit of distress. If I can figure out what label is most accurate then I can do research on what works best then I can act it out. Work with what you’ve got and the whole thing goes better.